Life As We Know It

The laptop Lunch

2012-02-08T08:12:00.001-05:00

The other day I mentioned that I bought a laptop lunchbox to try to keep Mac eating healthy at school. Her Teacher has a morning snack policy, which means that the kids can take out their lunches and start eating them in the morning. I hate it b/c Mac goes through more snacks this way, for no reason (although if I was in her class, I realizable I would totally appreciate this policy). Anyway, hopefully the the portions will provide ample snack for morning and lunch. And I like that I was able to incorporate items I wouldn't normally put in b/c now, instead of being thrown in a baggie, they will be
protected, and also have the illusion of being a "side dish."

Mac is super excited now. We'll see what comes home uneaten.

In the spirit of not wasting...

2012-02-07T23:52:00.001-05:00

How do carrots go from this:

to this:

The magic of a juicer! On the heels of my last post about wanting to be healthier and more economical, I have found a great ingredient in the mix. I got a juicer for Christmas, and have been making fresh juices for the last few days. Carrot is a staple ingredient, and I have mixed spinach, apples, oranges and ginger in it, too. It tastes great, but takes a surprisingly large amount of fruit to make a glass of juice. So maybe in that way, it isn't economical. However, the fruit and veggies produce pulp, which gets left behind in the juicer. So, I drink the juice, and then use the pulp for baking later. Although I try to keep us away from too many sweets, I have started to think that baking treats with fresh and sometimes organic ingredients is better than sending the kids off with a store bought snack, even if it is a 100 calorie pack, all of which have a surprisingly high amount of fat. (BTW -- I realize this sounds both crunchy and pretentious all at the same time, but believe me, we have our share of sam's club snacks in the house. How else would I know about the fat content in a 100 calories snack?)
Last week, I used a recipe from the Deceptively Delicious cookbook to make carrot muffins. They were okay, but not a hit with the kids. Last night we made these no bake oatmeal raisin carrot cake bites. They were more of a hit.
So, Mac enjoyed the carrot cake bites, I got my juice, and we didn't waste any food. All is good.
However...
Mac only got 3 of the 18 carrot cake bites. Tim and I ate the other 15! And we ate all 12 muffins last week in 24 hours. And the cookies I made two weeks ago, we finished almost all 24 of those in less than 24 hours. I have gained at least 2 lbs. from my "healthy eating experiment" and there are never any snacks left past the next day to pack in Mac's lunch!
And speaking of experiments -- I tried a new fried rice recipe with frozen trader joe's dumplings tonight. Mac literally spit her first bite back onto her plate (we are currently addressing table manners). Granted it was the dumplings and not the rice, but the rice wasn't much better received. She ate what she had to eat to get dessert, and not a bite more. And you can imagine what happened to the rest.
That's right -- Tim and I ate it.

Crazy About Food

2012-02-05T21:54:00.002-05:00

I am crazy about food. I love to eat! But I am also crazy about the price of our food, and the nutritional quality.

This has been a great week for both. I have spend a lot of time on food this week. I am always on the hunt for fresh food at the best price. Organic is very important to me. As vegetarians, we eat a lot of vegetables (duh), and I want to make sure they are top quality. Since we moved to PA, I have tried out numerous food stores, and I think I have narrowed it down to my top few places to get good, cheap, nutritious food.

Whole Foods: Expensive, yes, but not for everything. I can get bunched organic spinach and kale pretty cheap, and organic oatmeal and nuts from their bulk bins. Plus, their almond milk is decently priced. Even their regular milk runs about the same as everywhere else. And their organic frozen vegetables are my staples. Everything else is too expensive. I have to get in and out, and not be distracted by all of the healthy, earth friendly, overpriced extras.

Trader Joe's: Okay, I can't believe I'm saying this, but TJ's is kind of a crock. They are supposed to be healty, but almost everything is processed or prepared. Which is fine, but not so healthy. However, they do have a few great finds, including cookies, protein powder, and almond butter. And they are really nice.

Sam's Club: Although I used to feel like the produce there had no soul, I have recently been able to find a lot of staples, including organic apples and spinach, for a reasonable price. Sam's is now at the top of my list for a big stock up.

Co-op/Farmer's Market: We also have a co-op and a farmers market nearby. I think they will be even better in the summer.

Once I have all this food, I still have to figure out how to prepare it. Mac is a devoted "meatatarian" and Oli likes pasta and fruit loops. Even tim is more of a pasta/fake chikn' guy. I love salads, smoothies, and my favorite morning oatmeal. Most nights, when I tell Mac what we are eating, she says "yuk, that's disgusting" (almost no matter what it is). Most days, when I pack her lunch, she says "yuk, that's disgusting." However, she loves tacos and "salad bar" (where I put out a lot of fixings in little bowls and she can make what she wants). The key seems to be smaller bites that she can put together, instead of a big meal. So this weekend, I ordered her a laptop lunchbox, which is really a bento box that I can just stick little bites in. Since I never know what to pack her, I'm hoping this will help. Dinner is still hit or miss.

I am so jazzed up by my food week. I made it to 3 out of my 4 main stores, used lots of coupons, and am already thinking about what I can pick up next time. I am a loser, but at least I can eat to suppress it.

Soul Searching

2012-01-31T11:23:00.002-05:00

One of the things that has been missing since we have moved is a regular church to go to. I was very involved in my old church, teaching sunday school and attending services every week. The kids were happy there, and received a good education rooted in the Bible. They had friends, and we would often spend all of sunday morning there.

When we moved here, I was on the lookout for a church right away. I looked up Methodist churches, since that is what we were attending in NJ, and I found one in nearby Chestnut Hill. After browsing through their site, I was impressed with their focus on diversity and inclusiveness. After attending a service, I was thrilled to find that they do pull out sunday school for the kids (which means I don't have to try to get the kids to sit through service, which I don't think that they could do), but they also are so committed to diversity that they have a LGBT group. However, in talking to some members of the congregation after service (including a co-worker who coincidentally attends), they told me how great it was that they didn't focus too much on affirmations and other God-related parts of church. I was nonplussed -- what is the point of church if you don't focus on God. So although I have attended 2 services since, I have done so with skepticism. This church has many great elements, but may be lacking in the fundamentals.

In the meantime, we spent 2 weekends in NJ, during which I went to a really cool Methodist church with Beth near her house. But that is not an option for regular attendance for me, since we now live pretty far apart.

I have also tried an evangelical Presbyterian church near my house on Christmas and was not impressed. I tried another nearby Methodist church, but they don't have anything for the kids to do during service and the whole thing felt a little awkward. Plus, Mackensie had a tremendous tantrum when we left (they leave stuffed animals in the pews for kids to play with during service, and of course, she wanted to bring it home), so I don't know if we can ever go back there. Finally, this past week, I tried the local Catholic church on my own. It was recommended by my aunt, whose niece and nephew on my uncle's side, attend. It was big and lovely -- I haven't seen so many people in church in a long time. It seems active and thriving, but with 2 drawbacks: 1)I'm not sure I want to return to Catholicism. I think I like the methodist interpretation of service and our relationship with God (direct rather than mediated through a priest), and I know that I don't like the Catholic church's refusal to let women have positions of power and absolute stance against homosexuality. That said, I know that the Catholic church has many great things to offer, and this church in particular seemed really cool. I could see raising the kids there and having them become active members of the congregation. However, drawback #2 was 2) no christian education on Sunday. Kids have to (gulp) sit through service with the exception of @ 20 minutes when the younger kids are pulled out for kids message. By the end of mass, it was quite loud with all of the stirrings and grumblings of the youth. If other people's kids can't make it through, I know mine can't. And to separate out education from the day of worship seems like an extra step that we might not be able to consistently make. But maybe the plusses outweigh the minuses.

Ultimately, this search has become much more than just picking a new congregation. It has become about reaffirming what I believe, and choosing how I want the kids to be raised spiritually. I love what the Chestnut Hill church stands for, but when I read that their website says that they don't take the Bible literally, I was taken aback. However, when I think about it, how literally do I take the Bible? I know that my faith is strong, and because of that, I minimize inconsistencies between what I believe and what the Bible says. And, as the minister pointed out to me this morning, the Bible itself has inconsistencies (she mentioned 2 creation stories, which I was not aware of, but I didn't ask). But I am still somehow afraid that I am taking the "easy way out" if I view the Bible as open to interpretations. At the same time, I know that there are things that I don't agree with (stance on homosexuality) or adhere to (women covering their heads in public), so to choose a church that takes it literally while still staying true to my beliefs is somewhat problematic.

Ironically, since I started writing this post (over a span of 2 days, it's not like the phone rang mid-post. That would have been cool, though...) the pastor from the chestnut hill church just called to discuss me becoming a member. I gave her my questions and objections, and she answered them pretty well. She did say that it is a Christian church and that "Jesus is our guy." She said that they believe the Bible is inspired by God, but that God is still revealing himself to us, and that we have to use the Bible as a guide with that revelation, not an absolute. She told me that the christian education does emphasize the bible, but that rather than covering many stories, they stay with the same story for 4 weeks and approach it from different learning methods. It all sounded good, but I am still not 100% sold. However, she invited me to continue the dialogue any time, and told me that the other pastor actually teaches seminary at a great school in NY, so I am thinking that I could also talk to him about how to read the Bible as a both a literal, an an interpretive, text.

I still don't know what to do. For me, faith has been a journey that has taken many paths. I have been strengthened in it by many different people, and I feel that everyplace I have stopped has been worthwhile. So I am not afraid to take a detour for myself. However, I know the way that I was raised in faith has been a cornerstone of my journey; something to compare everything else to. I want to make sure that I give Mac and Oli the same advantage of having a strong, solid, and secure idea of faith to serve as their cornerstone throughout their own journeys. Which path is next?

Getting My Groove Back

2012-01-24T10:50:00.001-05:00

God is good, all of the time.

happiness in CA

I believe this, and it is an outlook that helps me every day. Whenever I am feeling my lowest, something happens that lets me know that God is watching and is faithful. I just have to pay attention. And although the last year was challenging, I have seen this faithfulness more than ever. But that isn't to say it wasn't hard at times, or that I didn't feel lost along the way.

What I have realized over the last month or so (among many, many other things) is that I lost my groove in 2011. I remember the beginning of the year as being so happy and full of promise, and by the end of the year, I was just worn out. I don't think that there is any other way to say it. When I think about this time last year, I think about attending a conference and presenting a solo authored paper in Florida, training for upcoming races, and going to Las Vegas in March. For some reason, I have pinpointed that months time and that trip as the height of my happiness for the year. Probably b/c it was fun and carefree. I was doing well personally and professionally. And somewhere within a week of Las Vegas, I got preganant.

everyday, silly, happiness

Once I got pregnant, my focus shifted and I didn't submit to my usual November conference b/c I was supposed to deliver in November. No big deal. I applied for and got the Summer Faculty Fellowship, which paid me to write a paper this summer. I was still happy personally and professionally. Although I knew we needed to budget better, we still seemed to be doing okay moneywise.

Enter May. I lost the baby. That was hard, and I don't think I, or my year, ever recovered. I got a rejection from a journal, struggled with my summer paper (about which the pressure was huge, b/c I was being paid just to write this paper), and found out we didn't really have any money. By August, my paper still wasn't done, our house was up for sale, and we were pretty much out of money.

sisterly happiness

By November, our house was sold, we had bought another, we were packing, I barely eeked out my summer paper, and things were busy and out of control. It hurt me to pack up the kids mid-year and pull them out of school.

married happiness

By December, we were in our house, and I was trying to wrap up the semester and move in at the same time. I was also desperate to get a paper out to a journal for publication, since my acceptance rate in 2011 was less than stellar.

By Chistmas, I was tired.

By January, I realized that I didn't totally feel like myself. I wasn't depressed or unable to appreciate the joys of everyday life. Although I have outlined a pretty bleak year here, I wouldn't call it "bad." I ran my first half marathon, we sold our house right away in a bad market, and we took a great vacation to CA during which we missed a hurricane in NJ. Almost every day brought me joy in some way. But I felt like something was missing, and I wasn't quite on my game.

So I have made a conscious decision to refresh. And I have gotten a lot of help along the way. First, I have been able to take a few lessons from everything that happened, and the number one lesson is that:

Pennsylvania happiness

1. Our family is great! And I mean our whole family. Our "nuclear unit:" me, Tim, Mac, and Oli, is wonderful. I love our kids, I love Tim, and I am confident that we can find happiness and comfort wherever we are. Our "extended family" is also beyond wonderful and generous: from monetary help, to emotional support, to places to live, to not judging, and to tasty and free dinners, our family has been there every step of the way. In their acts of kindness and generosity, I have seen time and time again the type of person that I want to be to others.

I have also, once again, recommitted to being more organized and work focused, and getting stuff done! To that end, I have recommitted to writing and work time, and am trying to be more organized about everything. Living closer to campus helps a lot. What also helps is a recent raise, and a "revise and resubmit," which is a conditional acceptance of a journal article. I am working to claim this year for success early on!

So God is good. Within days of my "lost my groove epiphany," I found the help I needed in blessings big and small. While I know that the work is my own to do, I know that I am never alone in doing it.

Happy Thanksgiving!

2011-11-24T10:58:00.001-05:00

Our day yesterday continued as well as it started.we made it into the museum, and a wheelchair and tickets were waiting for us. Oli did a great job wheeling and walking throughout the
Museum. We ran into his old PT, Ms. Ruth and her family. It was Ruth who got us into this tradition in the first place, so it was great to see her there. When we left, we were caught on the queue to see the balloons again. It was crowded, but cool to see all of the balloons ( including spidey) inflated now. We finished up with Starbucks and headed home.

Today I was up and met Beth and her friend Alena for a Turkey Trot in Princeton. Now I home watching the
parade with the kids. It is so cool to see the balloons from yesterday now in the parade.

I am thankful for our family traditions and the family that goes with them!

At the museum

2011-11-23T14:39:00.001-05:00

We may have finally done it right! this is our third year coming into NYC to see the parade floats be inflated. The plan is always to get in, go to the American Museum of Natural History, and then hop outside to see the balloons. The first year, we missed the museum, looked for parking for an hour, then saw the floats. The next year, we took the train, struggled through the subways (we thought oli was big to carry then!), made it to the museum and then the floats. This year I called ahead of time and secured a wheelchair and tickets. We drove in, hit no traffic, parked in a garage (moderate
rip off) and saw the balloons half inflated. Viewing doesn't start until 3, but since the balloons are big and right out on the street, we could see them as we walked up.

Our day has sort of stalled, as we are now stopped for lunch at UNO. After this, we are back across the steer and into the museum. Here is what we have seen so far.

Things I'll Miss

2011-11-08T11:23:00.000-05:00

We are fortunate enough to be in the final stretch of moving. Everything is settled but our mortgage. That is a big hurdle, and we are holding our breath until that is through. But on the buyers end, everything seems settled, so ready or not, we are moving anywhere between 11/23 and 12/6.

We are really excited about the move, and luckily, so are the kids. But as I go through the days completing tasks and going places, I find myself wondering if this will be the last time I go there/do that. I know this is a normal part of moving, but it reminds me how bittersweet a move really is.

1. I will definitely miss easy access to my family. This goes without saying, and isn't one of the mini-epiphanies I am talking about. I've realized this all along. But on a "things I'll miss" list, this has to go on top. Dinner at mom's, runs with Beth, and being not too far grandma for a weekend visit, are all things that won't be as easy once we move. Also, when I get locked out at our new home, I will be completely screwed b/c there will be nobody to borrow keys from. Did I mention the babysitting?

2. My gym. It sounds dumb, especially coming from me, but I really like my gym. I like the classes, the feel, and the vibe. I went a lot over the summer, and kind of tapered off as I concentrated on running leading up to the half marathon. But lately (especially with the cold weather) I have been back to the gym, and I really enjoy it.

3. Our pediatrician. I am taking Mac and Oli for flu shots today and I realize this might be our last visit there. I went there when I was little. They have been so great with both kids, and especially helpful about fitting us in whenever we needed something. In Oli's baby days, when we didn't have any answers about his hydrocephalus, legs, or anything else, they were always kind and patient. And when Mac hid under the exam table, screaming, and had to be restrained by no less than me and 2 nurses to get a shot, they were so kind and patient. Service like that can't be replaced.

4. Our library. I looooove our library. I took Mac weekly when she was a baby. Both kids have spent lots of time there. Although we go less now that the kids are in school, all of the librarians know us, and I don't think that there is ever a time when at least one of us doesn't have something out on loan. It is a beautiful place with lots of choices, and we can borrow from any other library in Middlesex county. I haven't bought a book for myself in years because the selection is so good!

5. My Starbucks. Because working at home isn't always conducive to getting work done, I have a trio of Starbucks that I rotate among when I need to get out of the house to be productive. They are my happy places, and have seen me though coursework, dissertation, lesson plans, and other papers. Just as research shows that you can improve test performance by studying in the location that you will take the test, I think that I am productive in Starbucks where I have been productive in the past. Like my productivity is imprinted.

I'm sure that there is so much more that I will think of as I visit over the next few weeks. This isn't meant to be a downer, b/c a) I realize I'm fortunate to have had all of these places, and b) I do realize we are only moving an hour away, and that things aren't that different there. This is more of a fond remembrance, looking forward to the future. And I realize that no matter where we go, Tim, the kids, and I will make great memories and a great home. And no matter where we go, the love and support of our truly wonderful parents, siblings, aunts, uncles, and grandparents will be with us.

Moving Forward

2011-10-18T07:47:00.000-05:00

Our family is doing a lot of moving, literally.

The two big moving events in our life are: the Hershey Half Marathon, and moving to Pennsylvania.

Before

After

First things first. This weekend, Beth and I completed our first half-marathon. It was about 3 months in the training, and it was ~~awesome~~ well worth it. We ran through Hershey Park and around the town of Hershey. The weather was great and the scenery was beautiful. In true form, Beth and I talked through pretty much the whole thing. The first 10 miles were great. The last three were torture. I think that is partly b/c the two of the last three looped around the parking lots, so that we actually had to pass the stadium where we would finish, and then run indefinitely to the end. I know it wasn't indefinite, b/c there was a set number of miles, but b/c we were just looping around the parking lot, it seemed extra long. However, the race ended in Hershey Stadium, where family and friends of all the runners (5,000 of us) were cheering us all on. It was so great and emotional that once we hit the stadium, we sprinted the last 1/4 mile or so and wound up finishing with a respectable time of 2:07 (I'm sure there are seconds to add somewhere, but I don't know exactly what they are).
The whole family came up the night before (Mom, Dale, Beth, Krys, Amanda, Me, Tim and the kids). We stopped at PSU for homecoming, and then headed up to Hershey to pick up our race packets and go to chocolate world. Then a delicious pre-race dinner where I indulged in way more carbs than usual. After the race, we walked around Hershey for the day. I had a horrible headache -- not sure if it was race related or not -- but that much time with our family is the perfect cure for all that ails you. We had a great time!
The other type of move on our plate is moving to PA. The high cost of living in NJ has gotten to us, and we are packing up to move closer to my campus in Abington. It is a suburb of Philly (about 1/2 hour or so outside of the city, depending on traffic). We were lucky enough to get a bid on our house after a few weeks, and even though we have some worries about it, we are moving through attorney review. Assuming all goes well, we will be moving in early December. So we have been on a mad hunt to find a house in PA. After spending all of our free time (really -- all of it -- and some that wasn't free) looking for houses, we have pretty much narrowed it down to the town of Springfield. We are going for a second look at our favorite house today, and then checking out a few new while we are there. We are hoping to choose a house to bid on today.
Moving is definitely bittersweet. We will miss our being so close to our families, and I hate taking the kids out of school. But everything is so much cheaper in PA, and best of all, Oli immediately qualifies for Medicaid. That will be a huge help with medical bills! Plus, being close to campus will be a nice change for me. Altogether, it makes a lot of sense, but I still get sad when I think of leaving our house and close proximity to all we love. But move forward we shall, as long as all things mortgage related work out.
Finally, has been moving like a maniac! Something has changed, whether it was his age/maturity level, or mine and Tim's redoubled effort, but Oli walks almost everywhere now. Inside the house, outside the house, all over the place. It is awesome! We still went ahead with the plan to order his wheelchair. He got fitted last week. It is a sporty wheelchair that is very easy to manage. There was no learning curve -- he was wheeling around the hallway at CHOP IMMEDIATELY! We couldn't believe it. He got to choose his color, and he chose glow, which is supposed to glow in the dark. We are going to treat it like the stroller, so he will still walk everywhere except for long distances like Hershey Park or extra long mall trips. But it will be so much better to have the wheelchair for these trips, b/c even if he isn't walking, he will still be able to get around on his own.
So this is definitely a time of forward motion. Hopefully, we will keep on moving!

Happy Birthday Oliver!

2011-08-13T08:38:00.001-05:00

I have been deeply blessed with two wonderful children,

one of whom turns four today. It seems unbelievable, but my little Oliver
is now a big four year old!

How has he grown and changed? In countless ways. I can still remember so vividly the fear and excitement we had the night before his birth, and the immense relief I had when I was finally able to see him for the first time.

The joy of unexpectedly being able to bring him home after 10 days in the NICU.

His sweet and intimate infant days. All of his therapy and growing through Early Intervention.

The first time he crawled (backwards) and the first time he crawled (forward) -- Both of them events we weren't sure we would ever see. His first steps on the parallel bars that he used for balance, his first steps in his walker.

His first (delayed) words from Goodnight Moon. And all of the other amazing milestones inbetween.

Today, I have a full-out little boy. He talks nonstop, loves the dirt, and loves his superheros. He loves to play with his sister, but can also have a fun time alone playing with his "guys." He is going into his second year of Pre-K, is starting to be able to count, and has friends and playdates. He can tell you his name starts with O. He can walk, but often refuses to. He is strong, but he is still cute and snuggly.

This guy is the whole package.

Happy Birthday, Little O. I love you always! I believe in you and know that you will do great things. May the Lord bless you and keep you. May He give you a wonderful life full of happiness and love!

Walker or Wheelchair

2011-08-04T09:42:00.002-05:00

Due to Oli's impending 4th birthday, and increasing size, a debate has been brewing in my head. When he was little, his SB differences didn't really stand out. Can't walk? Neither can other babies. Crawl a lot? So do other toddlers. Not potty trained? Neither is anyone else your age.

Now we are past all that. We are hitting a point where his differences do stand out. And differences are okay, but I am realizing that maybe we have been to complacent, and Oli isn't really equipped to enter the pre-school years and beyond.

Oli has always been a reluctant walker. He hates his HKAFOs, and as a result, doesn't like to walk. I do agree with him that the HKAFOs are clunky and unrealistic; it is hard for him to play, b/c he is locked into standing position. They are too hard to lock/unlock himself. as a result, we let him crawl around the house. I recently realized that while he walks the hallways at school, they have been letting him crawl in the classroom.

The last round of serial casting made it worse -- b/c he was out of his braces for so long, getting him back into them and walking has been a struggle. And, they may want to cast again in the near future. We have an appoitnment set up for next week to discuss this with ortho, but Tim and I basically agree that we don't want any more casting. It is disruptive to him, expensive, makes Tim miss work. We would put up with that, but it also DOESN'T WORK!

Now that he is 4, the crawling isn't really okay to me. And he is getting to heavy for me to carry. So, at what point do we find a more permanent solution? Will he be crawling around the house at 5, 6, 7, 10, 15? I can't imagine he would be. When we went to a SB walk when he was a baby, we met a teenager whose primary means of getting around the house was crawling. I was appalled. But now we are on that path. So what do we do?

I am starting to think about a wheelchair, but am really hesitant b/c:

-- I know he can walk, but he just resists (strongly) when I try to get him to walk. he walks ok for his pt, and around the school.

-- I'm afraid if we put him in a wheelchair, he will never walk again.our clinic has indicated that walking is a skill that should be developed between 2 and 5, and if we miss that window, it will be very hard to pick up later. and if we start using a chair, the ease it provides will make both us and him reluctant to engage in any walking.

I guess the crux of my problem is that we want him to walk to achieve maximum independence and fitness, but he is hardly ever doing it. So he is less independent than if we had a wheelchair. however, i don't want to "give up" and get a wheelchair, b/c i would feel like we are failing him since he can, technically, walk.

I don't want him to look back as an adult and say "Mom, you were the parent. Why didn't you just make me walk?" Granted, he screams and cries and just stands there when I put on his big braces. He passed up a trip to the library the other day b/c I told him he had to walk if he wanted to come.

Tim and I have talked about it, and we are going to try to just get him in the braces 1-2 hours a day, and see if we can increase it from there. But we have said this before, to no avail. I can sense Tim's hesitancy, b/c everything takes longer and is much harder with the braces. They are not realistic for the house, or even for many trips out of the house. But it all circles back to the question of: What else can we do? He cannot crawl/be carried everywhere.

We were at PP beach a few weeks ago, and saw a little girl zooming down the boardwalk in her wheelchair. It haunts me b/c I want Oli to have that level of independence, but I want him to do it walking. Why do they seem to be mutually exclusive?

Update in Haiku

2011-08-02T16:58:00.002-05:00

Lots of poop today.

We're back to the drawing board.

Dumb cone enema.

Another Experiment Ended and Update on an Ongoing Experiment

2011-08-02T08:38:00.000-05:00

Back in January, I decided I couldn't use my iPhone anymore. My fingers could not handle the touch screen; I was simply too old school to go without a keyboard. So I went back to the Blackberry. This time it was a Blackberry Torch, with a keyboard and touchscreen. However, I soon realized that I couldn't ditch my iPhone. I still carried it around (without service -- only using wifi) as an iPod for my iTunes library, and all the cool apps. I needed it everytime I ran to track my distance and listen to my podcasts (blackberry podcasts don't compare). Then Tim lost his iPhone in June, so I let him use my old one until it was time for his phone renewal. At that point, I realized how much I still used my iPhone, and how silly it was to carry around a Blackberry for phone and e-mail, and an iPhone for everything else. So I bugged Tim relentlessly, and as soon as his phone was eligible for an upgrade, he got a new 3Gs. Wish we could have gotten the iPhone 4, but it wasn't in the cards for this upgrade.

He realized that my old iPhone had more memory, so we switched back (I don't have nearly as much music on mine), so I essentially got a new iPhone this week! Yes, it has less space than my old one, but I didn't use the space anyway. This one is shiny and new, and despite my best efforts, I love shiny and new things!!!

So, in sum, I <3 my iPhone. While my Blackberry switch might count as another failed technological experiment, my renewed love for my iPhone makes it a success.

PLUS...

Very little poop in the diaper yesterday. I was expecting some, b/c we didn't get much with the enema Sunday night. But using a few tweaks from this video, I added soap and warmer water to the the enema, and insisted that Oli let me massage his belly a little (he does not like it!). I was rewarded with what seemed like a successful trip to the potty (if you know what I mean), and no poop in the diaper this morning. We'll see what we get today. I have them tracking it at school, too. Lucky them. Fingers crossed for another successful day.

Some Success with the Cone Enema

2011-08-01T08:52:00.000-05:00

I hope that I am not speaking too soon, but we might finally be having some success with Oli's cone enema.

As I may or may not have mentioned in the past, bowel and bladder issues are common to people with spina bifida, no matter what level their lesion was. Oli is an L4/L5, which means that all sensation below the 4/5 lumbar is damaged from when his spine developed outside of his body in utero. Essentially, the nerves that control his bladder and bowel just dont' work. This can manifest differently in different people; lots of people with spina bifida cannot empty their bladder on their own, so they have to catheterize every few hours. Thank God we escaped that; we had to do if for a few day in the NICU when he was born, until his bladder "kicked in" and he started going on his own. And by we, I mean the nurses. They were training me, and it seemed highly unlikely that I was going to be able to effectively stick a tube in such a sensitive area 4-5 times a day -- I didn't have the stomach for it. He must have wisely sensed what was coming, and willed his bladder to kick in.

So, for the last few years, he has been in diapers (sometimes clothe, and sometimes regular). We give him a capful of laxative in the morning, and then a cone enema at night before bed. We have been working the cone enema on and off for about a year, and it is pretty much the bane of my existence. At first, it was a big, messy, pain in the butt. Literally. But the worst part is, it just hasn't worked. It is supposed to completely clean him out until the next night, so that he has one big bowel movement on the potty after the enema, and then not again until we do the enema the next night. However, no matter what I try, he still has poopy diapers the next day.

I have redoubled my efforts this summer, being more consistent than ever, and leaving him on the potty for longer than before. We have streamlined the process, so that the enema part takes only a few minutes, and we read our books for the next half hour or so. It hasn't made a big difference, until this week. He had a couple of days of really loose bowels, during which I kept doing the enema, and then on maybe the third day, he didn't go at all except in the potty. The same for the fourth. On the fifth day, he had just a little poop in his diaper. We'll see what we get today.

I am hoping and praying that this the the breakthrough we have been waiting for. Once we get his bowels under control, I can put him in cloth training pants. After that, in a year or so, we can start catheterizing for social continence. And by we, I mean him. We want to wait until he can do it himself, so he can just go to the bathroom every few hours, cath, and be done. (Notice how I have neatly removed myself from the equation :)

But the bowels are the key. There is no point in controlling his urine if he is pooping without control. So I am really praying that our persistence has paid off and that we are getting things under control.

To be continued...

The End of an Experiment

2011-07-27T20:52:00.002-05:00

I am sad to say that our days of no cable are over.

A while ago, Tim and I realized that we no longer needed cable television. We could access virtually every show we wanted either through Hulu, Netflix on demand, or via a network website. I especially hated the way that parts of our "special bundle package" would expire without my realizing, and our bill would go up $30 or so every couple of months. Of course, I could catch the increase and call afterwards, but we kept getting whammied with these increases every couple of months.Dropping cable seemed like a great way to save some money.

However, once we started to research the options, we realized that it was nearly impossible to drop cable and save money. Because of the way all major internet service providers bundle their packages, it was almost the same amount of money to have cable with internet and phone, or internet and phone alone.

We dropped our cable, and kept our internet and phone through Verizon. Let me say that we never use our home phone, but need it hooked up for our house alarm. Even dropping the phone and just keeping internet would only save us another $20 or $30/month. To my pleasant surprise, the first bill we received was $30 less than we were quoted, or only $60, due to a customer loyalty discount. Score! I was elated. Our experiment was a financial success.

Meanwhile, it was a success in terms of lifestyle, as well. Although I missed being able to watch TV in our bedroom while folding laundry, we didn't miss having cable otherwise, AT ALL. We just don't need it. We don't watch any TV in real time; we DVR all of our shows, anyway. Now that football season is coming up, we would have had some difficulty without live TV, but we would have made due.

However, I received our second bill today, and it was $113. I just don't understand. Verizon makes their bills so difficult to understand that I can't figure out why it was more, but since it is closer to what I was quoted, I know that it was "right." So I made Tim get on the phone today (since I don't have anywhere near the patience to do it), and he confirmed what we already knew -- adding cable to our services as part of a "bundle" would bring us in at exactly the same price. So why not get our money's worth and get live TV, too. Of course, this is a "special offer" that will go up in 12 months. That is exactly what I was trying to avoid.

I feel defeated, like "the man" won. We were totally fine without the cable, but why not get the most for our money? It makes me mad to think about it. However, I am glad to know that we can live without cable, and that our side of our experiment was a success.

EDEN 5K and Training for the Hershey Half Marathon

2011-07-18T11:05:00.000-05:00

So, I might be turning into an athlete.

At the urging of my sister Beth, I have been running more and participating in 5Ks since the Turkey Trot last Thanksgiving. I now run 3-4 days of week, usually no less than 3 miles at a time. I also broke down and joined a gym other than the community rec center. Unfortunately, the rec center didn't really offer convenient hours/class times. So, after much debate and looking around, I joined the WOW gym. Although Tim had a bad experience there before we met, my sister Krys goes there, and one of our friends from Karate works there. What I liked best was a)the price, and b) the fact that I can work out at every location. Since I live almost directly between Robbinsville and East Brunswick, I have a pretty wide schedule of classes to choose from. So I have been doing a yoga/pilates mix and weight training class at the gym 2-3 times a week, plus running at home.

Then, Beth decided to up our game by getting us involved in a half marathon. Although I wasn't sure at first, she found a training plan (if you follow the link, note that it cautions you should get medical clearance if you are over 35. ouch.) that was doable, and a half marathon in a theme park. I think they even give out chocolate at the end. It doesn't get any better than that. We can't really back out now, since Mac is super excited to go to Hershey Park.

Game on.

We are in week 2 of training now. The farthest I have ever run is 4.5 miles, so I will soon be breaking new ground in distance. I am nervous about going up a mile every week, but Beth and I will be doing those runs together, so it should be okay. We are very good about rewarding ourselves with food, coffee, etc., whenever we feel overtaxed.

To kick off our training, we ran in the EDEN 5K this weekend at the Princeton Forrestal Village. It was HOT and HUMID, but we made it through in a respectable time of 30:30. However, we took our time as a challenge to do better next time, and are running two more 5Ks in the next few months.

This is all shocking to me, because until a year or so ago, the words exercise and Lisa didn't consistently go together. But now that I have started, I really want to make it through the half marathon and beyond. Not only is it good for me, but I think that it sets a great example for the kids, too. And as long as we are running, it is extra time that Beth and I get to spend together. All things considered, it is a winning situation.

Oli's COOL New Shoes

2011-07-07T14:46:00.002-05:00

This weekend was very exciting and fun for many reasons, not the least of which was that Oli got new shoes. And not just any new shoes, but cool new shoes. Because of his braces, especially his big ones, Oli has been forced to get whatever shoes fit. We have done our best to keep him outfitted in cool shoes, including two pairs of Tony Hawk sneakers and a pair of Adidas. However, his footwear selection has been limited to extra wide sneakers.

This weekend at Journey's Kids, we hit the jackpot! Not only did we find Superhero Squad sneakers that fit, but we also found Superhero Squad Crocs that fit. We can use the Crocs for the water park or for variety, and the sneakers for everyday use. The sneakers light up, and Oli has been kicking everything to make them light. He has even been more willing to go in his walker, which, coincidentally, lost an important screw yesterday. It figures that as soon as he was willing to walk in it, he couldn't.

Luckily, we found a temporary replacement screw today, so Oli is back in business. Here are some pictures of Oli with his crocs and sneakers.

Mackensie's First Communion

2011-07-03T21:55:00.001-05:00

When you are raised Catholic, receiving your first holy communion is both a big deal and a big event. You have to go to CCD for months, receive first penance, practice, get dressed in a white gown, and receive communion for the first time with the rest of your CCD class. That is how I did it. However, about 7 years ago, when I was pregnant with Mackensie, I was looking for a new church to go to. The one that clicked with me was Aldersgate Methodist Church, so we started going there. It didn't really matter to me that it wasn't Catholic. I figured as long as it was Christian, the point was the same. All Christian churches pray to the same God, and praising Jesus. That is good enough for me.

However, there are some differences. Methodist church is definitely more low key than Catholic church. Communion is only once a month, there is no confession, and anyone can take Communion as long as they believe. Sunday school takes place during church (during the school year, anyway), and there is no first communion ceremony. I've been thinking for a while that Mac is probably ready to receive communion. We pray every night and read the Bible almost every night. She recognizes the stories in Sunday school, and loves to go to church. It seems like a big step, but she is 6, which is the same age she would receive communion in Catholic church.

Today was the first communion Sunday since Sunday school ended a few weeks ago. Halfway through the service, when I realized this, I started to prep Mac for communion. "Remember the story of the last supper, when Jesus breaks bread with his disciples?" I asked.

"No."

As quietly as I could, I explained the story, and how communion was symbolic of Jesus' sacrifice for us. Mac zeroed in on the fact that it was bread and juice, and therefore a chance to eat during service. She started making munching sounds and asking when we could get the bread. Reading into the way she was acting, I think that she ultimately understood, but was excited by the whole prospect.

When the time came, we went up , and Mac did a great job. She said "thank you" instead of "amen," but overall, it was a successful first communion. Although it came without the ceremony that usually accompanies a first communion, it was a big deal to me. And I hope that in her heart, it was a big deal to her, too.

Mac at church during the Easter play.

I Love the Summer!

2011-07-01T10:16:00.002-05:00

We are a summer family, for sure.

The first part of the summer was a bit hectic with traveling and the kids still being in school. But in the last week, things have calmed down a bit, and we have been able to enjoy ourselves summer-style!

Mac started Rec Camp, and so far, she loves it. While she is out of the house for half of the day, we still have the second half for fun stuff. While Oli starts summer school (aka camp) next week, he has had time to relax and join me in some activities this week.

Nothing says the summer like the shore. Last Friday, we joined my aunt, uncle, grandma, and one of my cousins at their beach house in point pleasant. We walked the boards and rode the rides, but got caught in a giant rainstorm. The great part about them having a beach house (ok, there are lots of great parts) is that we just moved the party inside. We wound up staying way past the kids bedtime, but it was a lot of fun.

We had two days worth of picnics over the weekend. One was a birthday celebration for my stepmom, Pat, and the other was a celebration for MumMum. No pictures from those, but lots of fun, sun, and food.

This week, while Mac was at camp, Oli and I had two outings. The first was our weekly outing to pick up the veggies from our CSA at Honeybrook Organic Farm. We go every week after physical therapy. As with most things I do, it is sort of counterproductive and not so well thought out, but I am enjoying it anyway. We split a share with Beth, and drive an extra 25 minutes each way after PT to pick up a relatively small portion of organic veggies. Pros: we are supporting organic agriculture, we are supporting local agriculture, the veggies are super fresh and seasonal, and buying them this way is cheaper than the supermarket. Cons: I am wasting a lot of gas driving to and from (even in the prius) and what i am using/emitting probably counteracts the fact that I am saving shipping fossil fuels by going local. It is also a huge time suck, and I have no idea what to do with some of the vegetables (am trying a beet and mint slaw to use up the beets I have. Yeah -- we'll see -- I'm not holding my breath on that one).

But this week was so cool b/c we did pick your own berries and herbs. They had just opened the raspberry patches, and we actually got to go pick the raspberries off of the bushes. So cool. Even though Oli was less than enthused, I am hoping that the whole process will sink into his brain and that he will make the connection between farm and food, as opposed to factory and food. Not so overtly, of course, but I am hoping that the connection will become innate to both kids as they grow older.

Oli in the raspberry field. He is holding our "half pint" container, as well as a cabbage that he fell in love with. I think he thought it was a ball, since he asked for his ball back later.

A long view of the fields.

How we pick our veggies. They are all in bins, and we are on the honor code to take only what is alotted in our share (see sign above the veggies).

Finally, we spent some fun time at the spray park! It was so reminiscent of what we used to do before the kids were in school. Oli had a great time running around and getting wet. We even ran into Ms. Ruth, his old PT. It was a great trip, and I loved seeing him on the go.

He's so cool he doesn't even feel the sun!

I almost forgot -- we finally made it back to the library. Between my pregnancy and Oli in casts (both of which made it hard for me to carry/transport him on my own) we fell way out of our usual library habit over the winter/spring. But we returned this week, and signed up for the summer reading program. After 5 hours of reading, each kid will receive a ticket for a free ice cream at Mendoker's ice cream shop.

And aside from the shore, nothing is more "summer" than ice-cream. I can taste it already!

Last Day of School!

2011-06-23T21:53:00.002-05:00

Today was the last day of school for the 2010-2011 school year. I can't believe the kids have finished their first year of school. In terms of school year accomplishments: Mac has learned how to read. At night now, Mac actually reads Oli his book, and then I read hers to her. It is amazing to see, and I can't believe that she learned it in kindergarten. And Oli has really learned how to interact with other kids. I was reading his IEP (Individualized Education Protocol) today, which is based on a review completed last summer. One of the areas he was deficient in was socializing with peers. Well, no more! He has so many friends now, and his friend James even saves him a seat in class. I would say that the school year has been a success for both of them.

However, I have to say that in comparing their first day of school pictures to their last day of school pictures, they look a lot more tired now. Maybe because I took the picture after school instead of before. I'm glad to know they are working hard! See below to compare:

To celebrate, I let the kids choose where to go to lunch. So, of course, we ended up at Rainforest Cafe. And then they were each allowed to pick whatever treat they wanted for $10. So, of course, Oli picked a spiderman today. And while Mac debated for a while, she went with 2 princess lip glosses. Whenever Mac isn't allowed to get something, she knows exactly what she wants. But when she is given free choice, she often gets stressed out and either can't decide or shuts down and tantrums. Luckily, today went pretty well and the lip glosses were chosen with only one trip to and from the disney store. I even got to use up my birthday gift card from sephora, and got free happy birthday lotion (that sounds dirty, but it's not. they literally gave me a bottle of lotion that says happy birthday on it.)

Here is a picture from the rainforest cafe. Although their food is overpriced and relatively unhealthy, they do have a really good veggie burger. And Mac loves their little hot dogs. So, between the food, the gifts, and of course, the company, we all enjoyed our afternoon greatly.

Living it Up in...Kentucky?

2011-06-07T18:47:00.002-05:00

I am completely geeking it out this week at a social network analysis workshop at the University of Kentucky. It is a workshop that should help me design and run better studies using social network analysis. PSU is paying for part it, but the rest of the trip is economy style. As a result, I am staying in an old-school dorm for $20/night and walking everywhere. But so far, I really like it.

I had some scary preconceived notions about KY, but so far, none of them has been correct. The ride from the airport to campus was beautiful, as is the campus. The on-campus population is diverse, and people have been nice, but not creepy-nice. The weather is hot, but no worse than a hot & humid NJ day.

One of the best parts about being here is the gym. UK has a beautiful gym. The gym alone makes me want to get a job at a bigger university with a better gym. I have already gone to the gym 3 times - last night to run, this morning for elliptical and abs, and then after the workshop for a "core" class. There is even a rock-climbing wall, but I know my limits in coordination.

I am getting a lot of work (and working out) done, but I really miss my family. Mac always gives me mementos to bring with me. This time it was earrings and her Rapunzel doll. Whenever she gives me a stuffy, I take pictures and send them to her. Here is Rapunzel's trip to KY yesterday:

Getting off the plane at La Guardia (I had to fly out of Philly, stop in La Guardia, and then continue to Kentucky. Ridiculous.)

Waiting between flights. Rapunzel is out of control...it was barely noon!

Going from the airport to campus.

Going to bed. Not my best look, but I wanted to show the full day!

I Must Be a Lightening Rod

2011-05-25T09:30:00.002-05:00

I went for my follow up appointment to the D&C yesterday. It turns out that what I had was a partial molar pregnancy. This means that there was some, but not complete, fetal tissue present in my little fetus. What was fetal tissue was overtaken by abnormal cells. Which means that it never really had a chance of surviving. It had a heartbeat, and certainly looked like a baby on the ultrasound, but it was just not "viable." A partial molar pregnancy sometimes, but not always, happens when the sperm deposits an extra set of chromosomes. Unfortunately, this becomes a placental abnormality that can, in rare occasions, turn into cancer. So I have to be monitored for at least 6 months, go for a chest x-ray to make sure it hasn't metastasized, and we can't even think about trying again for 6 months to a year. My doctor did say that she has never seen a molar pregnancy turn into cancer in 15 years, and from what I have read it is extremely rare. But all partial molar pregnancies need to be treated this way just in case. Not what I wanted to hear when I went in yesterday.

A partial molar pregnancy is considered very rare. The odds are 1 in a 1,000.

Spina bifida, although the most common permanently disabling birth defect, is considered rare. The odds are 1 in a 1,000.

So what are the odds that I would experience both? I actually can't do the math. My gut says 2 in 2,000, which then reduces to 1 in 1,000, so that can't be right. But, I would argue that it seems very unlikely that both would happen to the same person.

You can find a partial molar pregnancy listed in "What to Expect When Your Expecting" under the "Managing a Complicated Pregnancy," "Uncommon Pregnancy Complications" section. This section is prefaced with "The following complications of pregnancy are, for the most part, rare. The average pregnant woman is extremely unlikely to encounter any of them. So, again (and this deserves repeating), read this section only if you need to, and even then, read just what applies to you." And then the next two pages apply to me.

So I know this sounds a bit self-indulgent and whiny. Although I could not think of the positives yesterday, some wine, conversation with a good friend, and sleep have given me some perspective.

1. I know that at least there was nothing I could have done to save the baby. It was nothing I did. In fact, my body sustained the pregnancy with no sign of trouble for two weeks after it stopped developing. Even on a subconscious level, my body wanted and cared for this baby.

2. It is a completely random occurrence that shouldn't happen again. There is nothing genetically abnormal about Tim and I that caused this or should affect future pregnancies.

3. Aside from the fact that we were super excited to have another baby, my family basically rocks the way it is. Mac and Oli are great foils to each other, and we have really hit a groove. Would we have cherished this baby? Yes. Are we suffering over its loss? Yes. Are we still in a really good place together. Yes.

I think there is more, but I have forgotten. Suffice it to say that I feel a bit more "bruised" than I did before I went in for my appointment yesterday. Although I did not get complete closure, b/c the miscarriage process is now being dragged out for at least 6 more months of bloodwork and testing, I do feel a little more ready to move on. I'm not sure why or what changed, maybe just having some answers, even if they just lead to more questions.

Living High and Being Frugal, All in One Day

2011-05-20T10:38:00.002-05:00

For the last year or so, Tim and I have tottered between being "financially challenged," and "doing okay." I have even taken on a part-time filing job with my mom to cushion the months that might be tougher. That said, we still eat out 3-4 times a week, managed a trip to Las Vegas (using frequent flier miles, of course) in March, and treat the kids pretty regularly. On the flip side, I have stopped getting my nails done, and work really hard to keep our grocery budget in check (without skimping on organic) using coupons and a stingy snack buying policy.

Some potentially expensive possibilities on the horizon: hiring someone to clean our house on a regular basis, joining a gym, and putting Mac in summer camp. Here is my reasoning for each:

No matter how hard we try, our house is a mess. Sometimes, it is even dirty. Even when we clean, it doesn't last very long. I am a relatively ineffective band-aid cleaner; that is, I can wander around the house straightening and wiping counters, but the house never looks any cleaner. Even though cleaning seems like it should be a universal skill, I am somehow bad at it. Tim is great at cleaning, but things have to get really bad before he uses this skill. The combined effect is not pretty. And considering my ongoing fear of child protective services paying us a visit based on something outlandish the kids might say at school, I feel like we need to step it up in the cleaning department. Plus, a clean house makes me feel so much calmer.

Of late, I have wanted to join a gym so that I can continue to run/work out despite the really crappy weather we have been having. But since my workout time is basically limited to the hour between when I can drag myself out of bed if I have to, and when the kids wake up and have to get ready for school, I am limited in how far I can drive. And how much I am willing to spend. Add to this that Tim feels that gyms are a waste of money, and I have been floundering. I really want to join the Y, b/c I feel like it is the civic minded thing to do, but it is more expensive than a "real" gym, and too far away to be of any use. I was feeling stuck for a solution, and had all but resolved to stay flabby for the summer.

Oli has been recommended for summer school, so that he can continue to receive PT three times a week, and I guess also to support his academic progress. There are two problems with this; he will be mad that he has to go and Mac doesn't, and Mac will be mad that Oli gets to go and she doesn't. No win situation. One of the parents at Mac's dance school recently recommended camp at the Y. I looked it up and it was not ideal (a combination of a weird age grouping and being sort of expensive). However, I was determined to balance out the summer experience for both kids.

All of these issues got resolved yesterday. The woman who cleans my mom's house came out to visit us and gave us a quote. She is going to come twice a month starting next week. Even Tim is on board. We are going to try it out for a month or two to see if it works in our budget. I don't like the idea of "outsourcing" something that is so fundamentally part of being a homeowner, but no amount of time juggling or half-hearted trying has resulted in a clean house. We might be spending money we don't have, but I am hoping the payoff is worth it.

I would like to think I am saving money with the solution to the other two problems, which is our local rec-center. I was able to find a 5-day a week, half-day, 5-week camp for Mac that overlaps almost perfectly with Oli's summer school. It is only 5 minutes away, and will take place in a local elementary school, just like Oli's summer school. Or should I say, Oli's summer "camp," which is what we are now calling it. This cost me $50.

For $5 extra, I was able to join the rec center, which has full gym equipment capability. They also have Yoga and other classes that I can join for a small fee. YAY! A close gym that is $5 for the year cannot be beat. And I am becoming an active member of our community in doing so. Community building )and frugal in one step. A dream come true.

I guess just like we try to live the work-family balance, we also have to live the need-want balance. I think that this week, I came out on top.

That sounds smug. I realize that it is only Friday afternoon, and I still have plenty of time to mess this up. Starting with the pedicures Mac and I are getting this afternoon. (Yes, I know what I said about saving money by not getting my nails done, but it has been over 3 months since I've gone, and Mac has been bugging me to go for weeks. It's her fault. Really.)

Miscarriages are Cruel

2011-05-16T08:22:00.001-05:00

I was going to make my triumphant return to blogging with the announcement that I was pregnant, but unfortunately, that is not the case anymore. Last Tuesday, at my 11 week ultrasound, I found out that the baby had stopped growing around 9 weeks. I was devastated. A missed miscarriage was always my biggest pregnancy fear. Irrationally, I was more afraid of that than of just losing the baby in an obvious miscarriage. So for weeks after finding out I was pregnant, I watched myself for signs of lost symptoms (which I agonized over more than once). However, finally, going into 11 weeks, I felt sore, nauseous, and full of indigestion. In other words, I felt very pregnant. Not to mention the tremendous belly I was growing.

So imagine my shock and horror when there was no heartbeat. I asked if anything was wrong, already sensing there was but hoping for the best, but the ultrasound tech confirmed my fears. Nothing. The baby had stopped growing and there was no heartbeat. I could not believe it, and as I waited for the doctor to come in, I kept wondering if it was a dream. I finally decided it wasn't, b/c I couldn't add the level of detail that I was experiencing to a dream. Unfortunately, Tim was home with Oli. For our earlier two ultrasounds, I had made him come with me. Since receiving news of Oli's diagnosis alone a few years ago, I haven't had many (any?) ultrasounds alone. Once again, I had to face a devastating diagnosis alone.

We had already told the kids about the baby after seeing the heartbeat at 7 weeks, and Mac was so excited. I was dreading telling them, when I could barely keep it together myself. Tim took the lead and told them, simply, that the baby had stopped growing, so we couldn't have it. Mac seems to be processing it in her own way, and even Oli seems to understand a little.

In addition to the emotional pain, miscarriages come with physical indignities that make the process so much worse. I opted for a D&C, since my body hadn't begun to recognize the miscarriage after two weeks. Having to go in to the hospital and have surgery felt awful. Knowing that they were physically taking the baby away and I would have nothing to show for it was so painful. Still feeling and looking pregnant b/c my body hadn't recognized the miscarriage yet kept me in some sort of denial limbo where I knew everything wasn't okay, but there was the smallest part of me that thought it might be. Oli's pediatrician actually asked me if I was pregnant the day before the D&C, b/c I was "too skinny to have a belly." Um, thanks?

Having to bleed out what was left of the pregnancy over the next few days sucked. Still having a pregnant belly almost a week later sucks. Knowing it won't go away for a month sucks. Losing the boobs I was hoping I could keep as a consolation prize sucks. Anticipating the holidays knowing that the baby would have been here a week after Thanksgiving sucks. Not being able to keep it together when I am alone for more than a few minutes sucks. Being afraid that I may have lost the chance to have my last child sucks. Not being able to hold or meet my little one more than sucks.

I have good friends who have been through this and they told me it will get better. I know it will. I made it longer today, than any other day, without crying. Tim has been amazing, although I am constantly in fear of being too sad and alienating him.

I am sad beyond words (although clearly I found some here). I want to be better. I want my baby.

Tim and me on Mother's Day, two days before I found out about the miscarriage. Our only "picture" of the baby.

I Need a Moment

2010-10-02T07:54:00.001-05:00

Actually, I need more like a month. Technically, that might be what summer was, but I was still working then. I need a month where I don't have to think about anything but getting our house and lives in order. Specifically, I need a month to take care of business for Oli. I haven't done horribly; in the last few weeks I have ordered, gotten, and started using his cone enema. I have ordered and gotten his forearm crutches. I have talked to the insurance company twice, and left a few messages for the billing department at Children's Specialized (which never calls back). I have met with Case Management, a follow up service to early intervention. I have talked twice with his school physical therapist. But each of these items off of my list is just a link in the chain...there is so much more...and he needs me to get it done:

1. Medicaid: I need to get secondary insurance. We need SSI or Medicaid or something. I don't even know what -- that is how far outside of the process I am. I should have started the process a) when I knew Oli's benefit for PT was going to run out and b) when it was summer. But nope. When I met with Case Management last week, they gave me the number for our local SS office and DDS (disability services) and told me about a Medicaid loophole we might be able to use. In importance, this task rates a 10 out of 10. In terms of being confusing, this task rates a 10 out of 10. So it sits untouched, at both the top and bottom of my list. Since I am a master of both procrastination and denial, your guess is as good as mine as to when this will get done.

2. Ditto to DDS.

3. Figure out existing insurance: We are still working on an appeal for more PT visits for Oli. This one really isn't my fault -- Children's Specialized just got the August bills over for them to reject, so we could only kick off the appeal process in the last few days. I found out yesterday, and called Children's Specialized right away. Of course, Oli's therapist, who has to start the ball rolling, is away until 10/11, so this is something that stays on my plate.

4. Figuring out the cone enema: I might have bought it, but I have no idea how to use it. That's not entirely true -- I have tried it following the directions, but it isn't working out too well. I contacted CHOP and they gave me the contact information of a mom who loves the cone enema for her daughter. I need to find what I did with her email address and then e-mail her asking for help. I also need to contact the company and make sure it is latex free. The whole line is supposed to be, but it looks like there is a rubber band around the tip of ours. Of course.

5. Sign Oli up for swim lessons: or some sort of physical activity. He only gets school PT, no outpatient, and he needs something. The neurologist recommended swim way back over the summer, but Oli still isn't swimming. Add it to the list...

6. Get new AFOs: He has grown out of his little braces. But this should be easy. I made an appointment for next Tuesday. We just have to get there.

Did I mention the house? Laundry? Floors? Cobwebs?

Luckily, because I am a master of both procrastination and denial, we have still been doing our usual day to day stuff. School, work, dance, karate, church, shopping, going out, hanging out. And I know it is good to have balance. If I could just have a month where I didn't have to split my attention between work and home, I feel like I might be able to catch up. I think the best I can do is work on my balance, and realize that no matter what, all is way better than nothing.

How was school today?

2010-09-23T11:37:00.000-05:00

The Price of PT and other things that aren't fair

2010-09-17T15:05:00.001-05:00

Insurance: a necessary evil. So glad to have it, but maddened by limitations. And we have been pretty lucky so far. Considering all of the doctors visits and equipment, we haven't been denied much. But now we are being denied physical therapy, and Oli really needs it. Our only other option is to pay out of pocket, but at $156 per session (and that is the reduced rate) we just can't afford it.

On top of that, I'm now being told that our insurance is denying claims from October of last year. If that is true, we are in trouble, since he also had sessions in November and December. Why am I only finding this out now -- almost a whole year later?! If we have to pay that, it won't be pretty. Of course, the hospital billing department, which has been ridiculously unresponsive as I've repeatedly left messages over the last month, is again not returning my call. Between an inflexible insurance company and an unresponsive billing department, I'm not getting anywhere but frustrated.

The only good news on the PT front is that Oli started his PT lessons at school this week. His new school PT met with him in gym, and apparently they had a great time! He's been using the scooter and loving it. And he walks everywhere in school, which is such a new concept for him. However, he is really making a go of it. And to top it off, I just ordered his new equipment, which is forearm crutches. I'm a little intimidated by them, since they offer so much less support than his walker, but it would be GREAT if he could start to use them. We had started with them in his PT at Children's, but he hasn't used them since we stopped going a few weeks ago. With his own set, he will be able to take them to school PT and really get started.

Maybe I should send the insurance company this picture. Would you deny this little face?

School Days

2010-09-13T14:59:00.001-05:00

School has officially begun in the Chewning household! I can hardly believe it, but the kids are entering their third week of school (and I use the term "week" loosely, b/c they have not had more than 2 days of school in a row yet). The verdict: they love it! Mac more than Oli, but I think they both enjoy their time out in the world. There was a lot of misinformation leading up to the first day of school, especially concerning Oli's programs, but once the first day came, it all worked beautifully.

Here is Mac showing off her back to school style. She was so happy with her Hello Kitty outfit and backpack. As a side note, I also would have enjoyed that outfit circa first or second grade. Everything old is new again!

Here are my two little ones getting ready for the bus. After much debate, we ultimately decided to let both of them take the bus. Unfortunately, they are on separate buses, but each seems to be enjoying his or her own ride. Right now, Oli is the only one on his bus. Hopefully, he will have other kids with him in the future.

Here is Mac getting on the bus. Even though I had prepared for the first day of school, I couldn't believe that I was actually expected to let them get on the bus on their own and then trust that they would get to school okay. It seemed unfathomable to me. Luckily, b/c of the bus/school wanted us to teach them about Oli's braces, we were actually told to follow the bus on the first day and get him on/off. When we pulled up to the school, there were buses everywhere! Once I found his bus, I also found the school social worker and Oli's teacher there waiting for him, too. Oli had a long way to walk, and almost got run over by the hordes of kids entering school. Luckily, they now are willing to drop Oli off in the back, where he has a shorter walk both outside and inside. So I was spared the agony of just putting them on the bus and letting them go until day 2.

Finally, here is Oli fresh home from his first day of school. Although he was not too verbally expressive about his day, he had a sort of confidence about him that told me he enjoyed himself. He asked for chocolate milk, and downed it like it was a shot. Then he slammed his cup down. It was pretty funny. He's just that kind of guy!

I'm very proud of my kids as they take this large step forward in their development. Although I am sad that this marks the end of their "baby era," it feels very right and natural that they should be going to school. I am so excited to see what this year brings, and the kids that they will become as a result.

The Most Wonderful Time of the Year

2010-08-20T21:41:00.002-05:00

Yesterday, we reached one of the mommy moments that I have been waiting for -- back to school shopping. To me, there is very little that is more exciting and satisfying than fresh notebooks, backpacks, and new pens. Since I came to terms with my inner nerd (and its not buried too deeply) about 30 years ago, I fully embrace back to school time and all that comes with it. As an aside, I am a little less enthusiastic now that it is my job, but I still enjoy the freshness of it all.

With both Mac and Oli starting school in a week and a half, Aunt Beth (one of the only other people in the world who gets as excited as I do about school -- not surprisingly, she is also a teacher) and I decided it was time to take the kids school shopping. I have been saving my 10% off coupon from Target, along with some coupons. Armed with the coupons and giddy excitement, we headed shopping...

We started out at Chipotle. Tim came along for that part. Delicious and successful. We were coming off of a horrible doctors appointment in which Oli got his dreaded MMR shot and Mac had to be restrained for her shot. So, lunch was a much needed break. Since we were at the mall, I decided to look for pants for work. Big mistake! Mac was so excited to go school shopping that she could not make it through my pants browsing. Into the car and over to Target.

Our first round of school shopping was not all I had hoped it would be. Mac way hyper, Beth and I were exasperated, and Oli just wanted to look in the "robot aisle." We loaded up our cart with the designated supplies (and then some), but the trip didn't quite feel right. We decided a trip to another, better Target, was in line.

It actually worked! Mac calmed down, Oli took a nap, and the next Target was much better. We finished up with a cinnamon pretzel and coffee. Mac played "kindergartner" while Beth and I enjoyed our coffee. Oli had a little trouble with his pretzel, but it was all okay in the end.

And here is a picture of just some of the spoils..

Happy Birthday Oliver!

2010-08-14T09:19:00.000-05:00

Oliver is three! For all of our work and worry, he is progressing very nicely. He can walk and talk. He has an amazing sense of humor and a sweet little personality that melts my heart every time. He is a true blessing, and I am so proud to be his mommy!

We decided to do his birthday a little differently this year. Usually, we have a traditional big birthday party. However, it is increasingly difficult to get everyone together, and our house increasingly needs work. Between extreme hot weather and extreme business, our backyard has gone from "overgrown" to "jungle."

So instead, we had an Oli day. First, we went to Toys R Us, and Oli was given free reign to pick whatever he wanted. A dangerous concept, I know, but he was really good about it. After some fun browsing and debate, Oli wound up going with some Super Hero Squad figurines and their helicopter headquarters. In the last few weeks, Oli has gone from a Cars guy to a Super Hero guy. I have to say, I think the SuperHeros are more fun.

Then, we went to the Rainforest Cafe for dinner. Since a very fun trip with Aunt Beth a few weeks ago, the kids have been begging to go back. So we decided to go for dinner. Once there, Mac got her "unbirthday" gift -- a stuffed monkey she has been thinking about since our last trip.

The next morning, Oliver's real birthday, he woke up early and immediately asked for his new toy. We spent the rest of the day visiting some of his grandparents. Here is a video of Oli hauling in the Iron Man loot at Nanny and PopPops:

Then we went to grandma and grandpa's for dinner, and we still have a fun day of celebraton at the shore on Sunday. When all is said and done, we will have celebrated with three cakes, fun gifts, and lots of love!

Last Week in Pictures

2010-08-05T22:16:00.001-05:00

Greetings from the Jersey Shore

2010-07-30T07:48:00.000-05:00

It has definitely been a week of both relaxation and running around. But I think that is always the way. My Aunt has very generously offered to let us use her house at Point Pleasant while she is away this week, so Tim, the kids, and I have been going back and forth between the shore and home. We came down Sunday night, and spent all day Monday on the beach. Mac LOVES the ocean, so she and Tim spent hours in there on Monday. Oli is less enthralled with the water, more enthralled with the sand, so he and I spent our time going between dry sand (blanket) and wet sand (waterline). There is a cool cafe/restaurant near the house/beach, so we had lunch there. Lesson 1 of the week: mid-day beer at home = drinking problem, mid-day beer at beach = relaxing (at least that is my interpretation. Who knows, maybe mid-day beer at beach also = drinking problem?)

Tuesday, Oli had a neurology appointment at CHOP. He has been episodes where he tenses up and looks around, or sometimes gets tense and waves his arms around for quite a while now. I have gone back and forth between thinking they are problematic and thinking they were just "baby excitement." So, finally, I made an appointment and took him in. I hate adding yet another doctor to our repertoire (this was neurology, not neurosurgery), but I felt it had to be done.

Oli had an EEG in the morning and an neurology appointment in the afternoon. We had about 3 1/2 hours in between. However, we are very good at passing time at CHOP. We spread out lunch (ice cream for Oli, thank you very much) and then went to the lobby. The lobby is pretty cool and has some large mechanisms in which balls are shuttled and -- a fish tank! Oli loves fish -- they have a cool tank at Children's Specialized, where he gets his PT. We spent over a half hour just at the fish tank -- Oli played peek and really talked to the fish.

In his appointment, we learned that he is not having seizures, but rather, self-stimulating behaviors. I have always heard this terminology paired with autism-related behaviors, but the dr. said this isn't necessarily the case. He might be expressing the extra energy that other kids bounce out or run out, but he can only really use his upper body. They said that if he is still doing these behaviors at 4 or older, it could be more of a problem b/c he should be better able to articulate what is making him do it by then. They also mentioned, almost as a throw-away, that his eeg was "slow" but that should be expected b/c of his diagnosis. Um, huh? As always, they said this may or may not mean anything. At that point, I was just so happy that nothing was wrong that I let it go at that.

Wednesday: a tour of the kids' new school (can't wait for september), color belt testing, and dinner with aunt beth at the Rainforest Cafe. Even our down days are fun!!

Thursday: Back to the shore! Our friends Dana and Matt met us there with their girls, Emily, Sarah, Megan, and Chloe. What was suppose to be a full day on the beach was sidelined by some bad weather, but we had a great time! We spend the whole day on the boardwalk -- the rain held off just long enough for us to ride some rides, play some games, eat some snacks, and finally go on the beach. Just as Dana and Matt were packing up to go home, it started to pour. So we ran the few blocks back to their car. Funny how we will spend a whole afternoon in the pool or ocean, but the run from the rain.

The sun came back out just 2 hours later, and we went back to the boardwalk for dinner. A great day and night! Today is beautiful, so we are off to the aquarium and then the beach. Although the locked-up fish make me kind of sad, Mac has been begging to go all summer. And it is an educational experience, so it is hard to say no.

I may not be getting much work done this summer, but I shore am having a good time :)

Blog Makeover!

2010-07-25T14:19:00.002-05:00

Okay -- nothing gets me excited like a good makeover. So here it is -- a makeover for my blog. Yay! This marks my re-dedication to blogging on a regular basis. I know -- I've said that before. But this time I mean it. I waste so much time online already, I might as well be talking about myself :)

How does it look?

I hear the secrets that you keep...

2010-04-20T08:55:00.002-05:00

When Mac was a toddler, before she could really articulate what she was thinking, I used to wonder what she dreamed about at night. If you don't have language or grasp abstract concepts, how do you dream? Babies don't have a sense of narrative or time (right??), so what do they dream about?

Lately, Oli has been talking in his sleep. A few nights ago, he said "No, not my biggies." His "biggies" are his HKAFOs, or the braces that go up to his hips. He has been giving me some resistance to wearing them lately,probably b/c they are cumbersome and make him really hot. But he needs them to walk, so more often than not, he has to wear them. I guess it really bothers him, b/c he sounded really distressed in his sleep :(

This morning, while he was sleeping, he said "More jello beans," with a big smile. "Jello beans" are jelly beans. I thought it was so funny, b/c he was so expressive, even though he was sleeping. He loves jelly beans and hates his braces -- I guess his conscious and subconscious are not that far apart...

This from the boy who is in speech therapy. Actually, he is having his (last) 6 month evaluation for Early Intervention tomorrow. We are recommending that he drop speech, and add a second PT session. With school coming, we want him as ready to go as possible. Speech hasn't really been working out, so this is a welcome move for us. It turns out that Oli is so good at talking that he can do it in his sleep.

Weird Things My Kids Say

2010-04-15T08:49:00.004-05:00

In the last 24 hours, my kids have said:

"I a big bird. I take you down, mommy."

"Don't throw me in the garbage. Okay, just my head."

and

"I feel alive!" (said in a triumphant yell)

This brought me to 2 realizations:

1. My kids sound like the foreign exchange students who learn English by watching movies.
2. I probably can't send them to school, because there is a good chance we will go to jail based on the outlandish things that they come up with.

2010-04-14T14:22:00.004-05:00

So, without meaning to, I let too much time slip by between my last post and now. So much has happened, and I haven't really had time to sit down and reflect on it all. Something that I don't think I've mentioned is that my mother in law was diagnosed with cancer in November and had surgery in February. Surgery went well, but she has had other complications, which is dragging out her post-operative treatment. Luckily her prognosis is good, and it is only a matter of time before she is through this ordeal. We are trying to strike the appropriate level of disclosure with the kids, letting them know that something is going on, without too many of the scary details. Because Nanny is still recovering, Tim and I have divided up our time with the kids, forming an ad hoc childcare/work schedule. The wonderful piece that has been added to our puzzle is my Aunt Patti and grandma, who come down every Wednesday to watch the kids. It has been great getting to see them every week, and watching the kids' relationship with them grow. When I was little, my grandma used to take care of me and Beth every Wednesday. It is beyond special to me that she is now getting to do the same with my own kids.

Because of everything that was happening, we delayed Mac's birthday parties until the end of March. For the first time ever, she had a kids party and a family party. The kid party was (where else) at the karate school. I was afraid that it wouldn't be fun, because only 6 kids could come. But once her first guest arrived, I realized that Mac was so excited that she would have fun with just one kid. Luckily, more showed up and it was a great time. Tim did a wonderful job keeping the kids busy, and we had an awesome princess cake and cupcakes.

Mac also made her Easter Play debut at church. Following her triumphant performance in the Christmas play (which really just hinged on her not throwing anything at the Baby Jesus this year) we decided to let her be in the Easter show. It was an exciting showing, and watching her become friends with the other kids in the program has been a real blessing. I am so happy that we have a good church where she can learn and grow.

We are gearing up for a busy few weeks. Not only is it the end of the semester, but the karate school is also hosting the regional tournament for April. Tim has lined up a lot of special guests, and extended the event into a nighttime tricking gathering and a tricking seminar the next day. It will be a busy, but hopefully lucrative and educational, weekend.

Meanwhile, while Tim is hosting the seminar, the kids and I will be heading to Sesame Place. Each year, the Variety Children's Network rents the park and opens it free for kids with disabilities and their families. We went last year and had a great time. I can't wait to go again.

Walking Ahead

2010-03-19T09:40:00.003-05:00

I talked to CHOP and they strongly discouraged getting a wheelchair that this point. They told me that the window for kids with SB to learn walking is really 2-5 years old, so he is on the early end of the curve. If we were to get him a wheelchair now, he would probably choose to be in the wheelchair over the work of learning to walk, and we would probably be more tempted to put him in the wheelchair, too (it does take him quite a while to walk from point A to point B, but that is more because of distraction than ability). Additionally, they said that if we send a wheelchair and walker to school, the teachers would always put him in the chair over the walker. So after talking to CHOP, and then to his PT at Children's Specialized (outpatient PT, aka "Baby Gym"), we are going to hold off on the wheelchair for now. I am comfortable with this decision.

Now that we've recommitted to walking, I have had Oli walking everywhere. To and from the car, from the karate school to the pizza place, and even around Party City (which was maybe more than I was ready to tackle). He is doing great, and seems to love it! We get really positive reactions from people. He did fall once yesterday, which is a big fear of mine since his knees are locked so he can't really break his fall. But he was able to put his arms out in time, and it wasn't so bad. I guess he has to fall a few times before we are both comfortable.

Time Flies

2010-03-15T21:05:00.002-05:00

Okay, so that is more than my attempt at explaining why I haven't posted in so long. It is also an observation fueled by Mac's 5th birthday (!), the fact that I enrolled both kids in school this week (!!), and the sheer lack of time that I have in any given week (so that come Friday, I look back and wonder what I did all week).

Yes, Mac is 5. It seems so weird (how can she be that old), but also very appropriate. Perhaps because we have been building it up for so long, 5 seems to be the perfect age for her. Not to young, and not too old. We celebrated her birthday with a trip to Uptown Playground, and indoor play area. She and Oli had a lot of fun. It was great, because it was clean, almost empty, had the coolest climbing equipment ever, and lots of free room for Oli to get around in his walker. Then we had Chili's, and Cold Stone ice cream cake with grandma and grandpa. A great day. We are just having her parties this weekend. This is the first year that she is having a "family" party and a "kids" party. The kids party is kind of small, since she doesn't have a lot of friends outside of karate, and those friends that she does have outside of karate can't make it. But 5 or 6 of her karate friends are coming to the school for an afternoon of pizza, activities, and G-force. She is excited, so I am excited. But also so nervous -- I don't want it to be a loser party. I want it to be cool! I guess it will be no matter what if Mac is involved :)

We registered Mac for Kindergarten last week, but in true Lisa style, I couldn't find her birth certificate. So she isn't fully registered, but at least they know that she is coming. And Oli's EI (early intervention) case manager set up a meeting with the school district to start his registration, as well. He is transitioning out of EI and into an integrated preschool when he turns 3 (which is conveniently in August, so he doesn't have to enter mid-year). From what I can gather, he qualifies for a free spot in preschool based on his diagnosis, but they still have to evaluate him twice (perhaps that is why NJ is in so much debt!!). Ruth, his EI PT, was at the intake meeting, and mentioned that he will probably need a wheelchair. I felt kind of blindsided, b/c I thought we were making good progress with his walker. Admittedly I might be in denial, since he only really walks @ 20% of the time, and crawls the other 80. And we hit a lot of roadblocks, as well. For example, he just spent the last 2 weeks out of his HKAFOs (big braces used with the walker) because of a pressure sore. But I figured since he can walk, we just have to up his game a bit. But her argument is that if he isn't completely at ease with his walker, it will hold him back and he won't be able to keep up with the other kids. I'm afraid that if we introduce the wheelchair too soon, he will come to rely on that too much, and never really be a walker. So it is a real dilemma. I am going to call CHOP and see what they have to say.

So, time does fly, but it does involve progress. That is a good thing! And even though I feel crazed and busy, I almost always remember to cherish the moment. How could I not?

Sister and Brotherly Love

2010-01-30T11:19:00.003-05:00

Quite fortunately, we have had a relatively calm new year so far. Our milestones are coming in the form of small things, like Oli's new words, Mac's always developing sense of humor, slowly expanding Oli's range of mobility by taking his walker to new locations like the library and the bookstore, karate testings, new vegetarian recipes that the kids only like every 4th or 5th try, and movie nights. Here is a perfect example of how Mac and Oli pass the time on any given day.

They crack me up when they play together, especially when they think nobody is looking. Also note in this video Oli's outfit. He got the Jet's gear for Christmas, and they won every game when he was wearing the outfit. It was a joke for a few weeks -- right before game time, I would get him suited up. Unfortunately, the "magic" wore off last week, but it was fun while it lasted.

Starting off the New Year Right

2010-01-07T15:41:00.003-05:00

We had our spina bifida clinic appointment on Wednesday, and got good reports across the board. While we didn't see neurosurgery, because we just saw them in November, we did see all of the clinic regulars (pediatrician, orthpaedist, nurse practitioner, and physical therapist), as well as NOPCO (orthotists), and urology. While neursurgery used to be the appointment I most anticipated, now it is physical therapy. I am so eager to be sure that Oli is on the right track, and to figure out how we can help him along in his journey to walking.

Overall, we learned that he is in the 5th percentile for height and 55th for weight, so we have to make sure that we make smart food choices for him moving forward. He is a slight 30 lbs., so it is no emergency, but still something to watch for. We most likely have to up his Miralax (laxative) and keep up with his daily enemas (to get him on a bowel management routine that will enable him to be socially continent). He is on the right track walking, but not nearly ready for reduced bracing (bummer, because I can't wait to get rid of his HKAFOs), and his feet remain "tight" (wanting desperately to go back to the club foot position) but manageable. Perhaps most importantly, we learned from his renal ultrasound that he has "normal bladder and bilateral kidneys" (direct quote from his u/s report). While we knew we weren't having any problems in this area, it is always nice to have a medical confirmation. All this, and we were in and out in just about five hours. That sounds like a lot, but is a best-case scenario for clinic day.

What a great way to start off the new year!

Happy Holidays!

2009-12-29T11:02:00.008-05:00

After a fun night of opening gifts, hanging with family, and eating traditional pea and potato soup at Grandma and Grandpa's for Christmas Eve, the kids were wiped out. Mac managed to get up by 7:45, but Oli wouldn't budge.

Oliver slept in while Mac opened her stocking.Meanwhile, his stocking waited.

After the gift extravaganza at home, off to Christmas with Grandpa George and Grandma Pat...

After Christmas with Grandma and Grandpa, we went to Nanny and PopPops. Tim has those pictures, but you can imagine a true gift opening extravaganza.
And finally, a few days later, Christmas at Aunt Beth and Uncle Mike's. We are truly a blessed family to have so much fun and love in our lives!

Taking Our Show on the Road

2009-11-24T09:04:00.003-05:00

Mackensie has been performing in quite a few shows, lately. We go to a wonderful church, with a wonderful youth program. They give the kids lots of opportunities to get involved and show their skills. This hasn't always worked for us in the past - I'm sure everyone remembers last year's Christmas show that involved Mackensie running from stage to audience a record number of times and ultimately taking and throwing one of the necklaces meant for baby Jesus. I was going to keep her out of the play this year just to be on the safe side -- Mac is a great performer, but a bit unpredictable in the behavior department. However, they asked her to be in it, so it's on them. In the meantime (I suppose gearing up to the holiday performance), Mac has sung in two different church performances over the last three weeks. The picture is from the first performance, in full choir get up. The video clips are from this past Sunday. It was a surprise to me and Mac -- we had no idea she was going to sing. But she picked up the words quickly, and gave it her all. One of the other parishioners even said she was the "most enthusiastic." Check out clip number 3, "The Finale" for her most enthusiastic performance.
The Opener

The Middle

The Finale

When Princesses Meet

2009-11-11T19:52:00.002-05:00

Very rarely is Mac rendered speechless...

In Case Ruling the World Doesn't Work Out

2009-11-07T14:18:00.002-05:00

Mac can always be a director.

Baby Steps

2009-11-02T22:42:00.003-05:00

I'm so proud of Oliver! Today he walked from his bedroom, through the living room, and to the door that leads into the hallway to the playroom. Last night, he walked from the living room to his bedroom. I have recently started to instill in him the idea that the walker isn't just for exercise or small steps, but rather a way to get from room to room. It takes him a while: partly because it is hard work, and partly because he gets distracted and stops everywhere to touch things. It is cool to watch him, because he seems to happy to be standing and is so curious about the various things he sees on his walk (the piano, his books, stickers, etc.). I think that he is starting to enjoy standing and walking.

After he walked through the living room, I carried him through the hallway to the playroom. I gave him the choice of walking on his parallel bars or playing with his trains. He chose trains, so I set him up halfway across the room from his train table and let him walk to it. Not only did he walk across carpet, but he finished it up with the elusive swing through gate that the therapist at CHOP wants him to use! It was so great to see -- we had high fives all around.

When I told him it was bedtime, there was much crying, but he actually asked for his walker through his tears. Granted he didn't use it when I put him down with it, but I think that was more because he didn't want to leave the playroom and was preoccupied making sure that Mac, too, had to come in for bed than because he couldn't do it or didn't want to walk.

I can't wait to see what he will do next!

Vacation from the Other Side

2009-10-28T20:48:00.003-05:00

So what does a family of four with absolutely no free time on their hands do? Take a trip to Disney, of course. Tim had to travel for fall taekwondo nationals, so we booked an extra four days onto the end of his trip, and the kids and I flew down to meet him. When we booked the trip, I don't think we anticipated how crazy our fall was going to be. Tim had no idea that he would be acquiring a second school, and I didn't think that my semester would be so busy. But once the tickets were booked, we had to go. And I'm really glad that we did, because I loove Disney (or Dis-e-ney, as Mac says), no matter how short the trip or busy our schedule.

One thing that was interesting about this trip was that Oli's spina bifida became an external focus. That is, it affected the decisions we made about the trip. At first, it didn't even occur to me that this trip might be a little different. But as I started packing, I realized I would have to choose which braces he would wear. Little ones, because he would be lighter and therefore easier to transport through the airport, or big ones, because checking them in the luggage could result in damage to the braces? I opted for his big braces, because I did not want to take the chance that they would get damaged in the luggage.

While this was the right choice, it also led to complications. First, he was much heavier to carry through security (after I took out my laptop, took off everyone's shoes, and disassembled the double stroller). Next, he set off the metal detector. So we had to step to the side and be wanded. Seriously. They were nice about it, and there was no cavity search involved, but both Oli and I had to be swiped with the wand to make sure that we weren't carrying anything onto the plane. Of course, Mac is walking around us on the dirty airport floor, asking "why?" and not wearing shoes, during the entire process.

After that, it was pretty easy going. We met up with Tim, had delicious dinner, and planned our next day at MGM studios. Towards the end of the day, we were waiting on a pretty long line for the Toy Story ride, and Tim and I were switching off holding Oli. At this point of the day (since we had already done it several times) it occurred to me that most kids Oli's age (and size) would be standing in line with their parents for at least some of the time. At that point, I realized that we actually qualify for disability status, and should be entering through the handicap entrance on the rides.

I had mixed feelings about this realization. Although I am all about embracing Oli's spina bifida, and creating a "new normal" where whatever works for him is our reality, I've never been confronted with fitting him into a public category, or using public resources specific to his condition. I'm not explaining this quite right, since we do use public resources (early intervention) and I do participate in spina bifida events. But it was sort of weird to actually go up to guest services the next day and request and "handicapped" pass. Maybe because the word "handicapped" has such a negative connotation to it, and that isn't how I see Oli? And using that pass lumps him into a category that is defined by negative definitions/stereotypes? Or maybe just because it was a public declaration that he fits into a category other than "normal?" My usual cry of "empowerment" was temporarily sidelined by this inner conflict, of wanting to embrace his differences and at the same time wishing he didn't have to deal with this. And realizing that as he gets older, his differences are going to become more pronounced.

So it was with these mixed feelings that we went to guest relations, explained our situation, and got a sticker that allowed us to use his stroller as a wheelchair. The first ride we went on was Small World, and they had to stop the ride so we could fill an entire boat with people from the "disabled" line. We were a spectacle, which only compounded my ambivalent feelings. But after that ride, we were able to get on everything the same way everyone else did, but by using a different queue. It actually made our second day a lot easier. We did get to skip to the front of some lines (!), but even when we didn't, we got to wheel Oli through the line in his stroller, rather than taking him out and carrying him through the line. I'm sure this saved him some frustration, as well as my back.

On the way back from Florida, I used my lessons learned from the flight to Florida and took Oli's braces off and put them through x-ray. A pain, yes, but better than getting wanded. Although I don't know what we will do when Oli is older, and is perhaps walking through security using a walker or crutches. Will he need to get wanded every time? Although I see the necessity, it is also sort of degrading. Our trip was a lot of fun, but it was also an eye opener to the fact that no matter how much we embrace Oli's differences and accept them as our normal, operating in the "real world" may not always be a normal experience.

Big News on the Little Guy

2009-10-16T22:27:00.005-05:00

Oliver has taken his first steps! It is absolutely amazing to see.

We took him to CHOP for a clinic appointment about two weeks ago. It is funny how things have changed. I used to think that the PT was useless, and waited breathlessly to hear what neuro and orthopedics had to say. This time, I couldn't wait to get to PT so that I could see what she had to say about using his walker and using a "swing through gait." Oli got his walker in July, but cried every time I put him near it until September. Finally, with the help of his PT (especially his outpatient PT at the 'baby gym'), he started to stand with it. But neither his Early Intervention (EI) PT nor his outpatient PT could figure out how to get him to do the "swing through gait" that CHOP recommended (the swing through gait is just getting Oli to boost himself up on the walker using his arms and then sliding/swinging both feet through at the same time). Our EI PT doesn't agree with it at all, and our outpatient PT was not sold, either. So I was anxious to see what the CHOP PT had to say when I asked about these challenges.

She more than delivered, and by the time we left, Oli had taken a few steps with her help. Excellent! When we went to outpatient PT the next day, he actually took a few steps on his own. It was the most exciting thing I have ever seen. He doesn't exactly swing through yet -- right now he sort of twists his hips and moves his feet forward as he does it. Whatever! I am so excited that he is doing it himself that he can do whatever he wants.

Our EI PT brought Oli a set of parallel bars made of PVC piping that was donated by another family. Oli can walk down the whole length of the bars. It takes him a little while, and he wants to get down (which means unlocking his braces and letting him crawl) as soon as he is done, but it is a great first start. He has walked a few steps almost every day for the past two weeks and it is amazing!

Now I have to learn how to strike a balance between encouraging him to walk and letting him set his own pace. We had his 6 month EI evaluation today, during which we assess him in terms of previously set goals, and create new goals based on where he is. He has exceeded many of his old goals. I would never have believed 6 months ago that he might be walking now. His new goal (to be reevaluated in April) is to be using his walker to move from room to room. With hard work and some divine intervention, I have faith that he will get there.

Field Trip

2009-09-12T07:53:00.002-05:00

It is a well established fact that a field trip to Washington D.C. is an educational experience. I have always enjoyed going down -- I am a huge museum nerd. So when labor day weekend rolled around and Tim suggested taking the kids on a museum trip, we looked into all of the local museums, and also considered D.C. Even though I though D.C. would be a little bit above the kids' heads, we decided to go for the overall fun of a road trip.

So on Saturday we packed the kids into the car and headed down. We actually left on time, stopped at Subway on the way down, and made it in really good time. We had a beautiful (but cheap) hotel, right off of the metro.Unfortunately, there was no pool. Despite the fact that Tim thought there was one when he booked.

So we whisked them out of the disappointment of the hotel to the metro. The kids got to go on their first "underground train" ride, and we went straight to the Air & Space museum. We thought there was a pretty good chance that would be a crowd pleaser. Oli was quiet, and Mac complained. Non-stop. About walking, wanting to leave, and and anything else you can think of. I may get frustrated by Mac, but very rarely am I annoyed. She was, in short, annoying.

Day 2. Actually a lot better. We relaxed in the hotel room and watched an old scooby doo cartoon movie. I had found a starbucks the night before, so I was covered for coffee. The kids played and laughed. Life was good. Fast foward to the metro (okay, except Oliver cried whenever it started to move and Mac asked at every stop if it was our stop). Day two was the American Museum of Natural History. Dinosaur bones -- a no lose exhibit, right? Mmm. sort of. Moderately entertaining. We had to fight for a table for an overpriced lunch. It was tasty, though, and I was pleased to find vegetarian fare. Next to the hall of mammals. Jackpot! Mac loved the hall of mammals, and took over 200 pictures on Tim's iPhone. Reviewing the pictures, it looks like we went on a very blurry safari. Unfortunately, Oli was not so mellow here. He wanted to get out and run around. I can't blame him, but I wasn't about to let him crawl on the floor. So I carried him a lot. It was exhausting.

We left he museum and went to the carousel on the mall. Mac and I were third in line, but we missed out on the really cool sea serpent. Why would they only put one really cool sea serpent in among about thirty plain horses. It seems like a tantrum waiting to happen. Which is was. Mac stood rooted to her spot, screaming, crying, and pointing at the serpent. Finally, she chose a horse and we rode. Again, it was exhausting.

We tried the sculpture garden. No go. We tried the art museum. No go. We tried to walk to the metro. No go. Tim wound up carrying Mac and we made a mad dash to the train, got to the car, ate dinner, and headed home.

So, as always, the trip to D.C. proved educational. Here are some lessons I learned:

1. Mac is not too big to need a stroller. We really need to get the double stroller fixed.
2. 4 1/2 and 2 are too young to appreciate the Smithsonian.
3. If there is no pool, nobody will have quite as much fun.
4. Subway (the sub shop, not the metro) was Mac's favorite part of the trip.
5. I could have saved a lot of time and money by taking the kids to a local Subway.

Sweet Dreams (AKA Stupid Bouncy Ball!)

2009-08-28T11:50:00.003-05:00

Perhaps now I have a bit more insight into the root of Mac's distaste for all that is bedtime. She must have some pretty vivid dreams, because at around 4:30 yesterday morning, she came running hysterically into our bedroom to tell us that she swallowed a bouncy ball. Since she was breathing and crying, I was relieved to realize that she wasn't choking. Once I established that, I became instantly cynical about the idea of her swallowing a bouncy ball. Not impossible, but certainly not likely without some choking involved.

Tim and I asked her plenty of questions, including how, why, and did her stomach hurt. She was very worried that a) she was going to die, and b) how was she going to get the ball out. While I did my best to assure her that this wasn't going to kill her, I wasn't really sure how we were going to get the ball out. I guess if it's small enough to go in, it's small enough to come out, but I didn't know how to explain that in a way that wouldn't freak her out.

Although the scenario is funny in retrospect, it was really disturbing to see Mac so upset. So we let her crawl in bed and tried to get her back to sleep. The next morning, I called the doctor and they said that they would recommend x-rays in order to determine if the ball was really in there, and if so, when we could expect it to "pass."

By this point I was even more seriously doubting the ball in the belly. But Mac even knew what color it was (yellow), and told Nanny that she ate it because it looked like a cheese ball (which she eats maybe once a year because we don't keep them in the house. So unlikely). I don't think that she was lying or doing it for attention, but I do suspect that it was a vivid dream. But since we started the train rolling, I did in fact take her for x-rays, which revealed the presence of no ball anywhere in her midsection. Although it was the expected outcome, it was also a relief. I was not looking forward to helping her poop out a yellow bouncy ball this weekend.

So they sent us home with some candy (a nice treat for mac and me) and the caveat that sometimes rubber objects are hard to see on an x-ray (nice to know we aren't the first bouncy ball family to go to the radiologist). So even though the chances are slim that it's in there, the yellow ball is still missing. I might get a surprise this weekend, after all.

State of My Oli Address

2009-08-21T09:41:00.003-05:00

Lest it be thought that I would let a birthday slide by without getting sentimental and talking about how wonderful my kids are, I want to provide some perspective on just how great Oliver is at age 2, and what he is up to these days.

The latter half of my pregnancy with Oli was marked by not knowing what to expect when he was born. I had faith that God would not deliver more than we could handle, and I had faith that I would love this baby no matter what. And I was right on both counts. We debated trying the MOMS study, but worried that the cost could be high for both Mac and Oliver in terms of time and strain. That decision was taken out of our hands when we didn't qualify for the study because his Chiari malformation wasn't prominent enough. When he was born, we worried that he would be in the NICU for an extended amount of time, and that he would need a shunt to drain the excess fluid from his brain. We went home ten days later with no shunt. And I'm quite happy (albeit a little harried by the "Wait and See") to report that he still doesn't have one today. We were worried about having to catheterize him daily, but after a week or so, he started to urinate on his own. Way to beat the odds Oli!

We had no idea what would happen with his feet and legs, which were all the way up by his head when he was born. Slowly, through serial casting and time, they came down. We worried that he wouldn't be mobile, but just shy of 1 1/2, he started crawling. We worried that his braces would never fit, but after two surgeries, he now wears not only his AFOs, but HKAFOs that help him to stand.

After a while, we began to worry that we wouldn't talk. But his comprehension seemed great, so we hoped it was a matter of time. This summer, he began to grace us with his first few words. Granted, most of them are animal sounds, but I love listening to the little menagerie we have going on. And the words "car," "ball," and "more" have never sounded cuter. "No," I could take or leave, but the rest is great. Am I still worried that he is a delayed talker and that this could be a sign of a bigger delay? Definitely. But I am just happy to hear what he has to say, even if it is "woof."

Right now, walking is our biggest challenge on the table. He got his walker a few weeks ago, and doesn't seem to like it at all. While CHOP felt comfortable ordering it for him, his home PT, Ruth, doesn't feel he is ready for it. He can take little steps if we hold him up, but he doesn't want to free up his hands to hold onto the handles (he always carries a toy car in each hand), and he cries when we try. I'm sure that it is a matter of time, and that he will amaze us again, but that it is difficult to wait.

Oli is amazing, sweet, special, and loving. He is funny and cute and the the best snuggler. He captivates just about everyone he meets, and never fails to draw a smile from me. He has taught me that 'normal' is a subjective state of mind, and that our normal is whatever we want it to be. I LOVE my little boy, and I enjoy watching him grow every single day.

Happy Birthday Oliver!!

Embracing My Jersey

2009-08-16T21:10:00.003-05:00

Ever since our trip to the West Coast to visit my friend Lynn in January, I have been having some major West Coast envy. Time and I both fell in love with California, especially Santa Monica. I think that we would both move out there if it was feasible, but there are just too many factors that would figure into a big move right now. We even planned a second trip for July, but had to cancel at the last minute. So I have been pining for California for quite a while.

I realized a couple of weeks ago that what I would have to do is to embrace my Jersey. NJ has personality, if nothing else, so I decided that I had to tap into that and go with it. This weekend went a long way towards discovering my inner Jersey. On Friday, pre-season football started. I love football, and I love(/hate) the JETS. Even though they lost, it felt good to watch the game and see what our QB prospects are for the year. I got the excited feeling in my stomach and realized that I probably couldn't root for any other team if we moved. I'm no Chargers girl. So score one for NJ.

We went to Great Adventure twice this summer, which is also a very Jersey thing. Perhaps less so since they've cleaned it up - no skanky people in bikinis strolling around or teenagers smoking. But there are so many childhood memories there that it is definitely a part of my Jersey roots. And the kids loved it. Especially Mac, since she is just the right age. I think that a season pass next summer is definitely something to look forward to.

On Saturday, we went down the shore with Tim and his instructors from the karate school. We visited my Aunt Patti and Uncle Bob, who have a house down at Point Pleasant. Anyone who knows me knows that I LOVE the shore. And this Saturday was the ultimate experience. We were down at my favorite NJ shore, at a beautiful beach house, with wonderful family. My aunt and uncle got a blow up pool for the kids and let them splash around while we soaked up some sun, had some drinks, and talked. Then I took Mac on the boardwalk for some Kohr's orange/vanilla twist. Really, nothing better.

And much to my surprise, I'm actually sort of looking forward to autumn. I dread winter, but wouldn't mind the autumn activities of snuggling up in sweats, watching a JETS game, and having soup. I think if I can swing a trip into NYC, I'll be a reaffirmed east coast girl.

So have I embraced my Jersey? Abso-f'in-lutely.

VACATION!

2009-08-09T15:56:00.011-05:00

The wonderful view from our balcony

our (failed) attempt at being athletic

sisters minus one

me and my little man

our beautiful beach house and my beautiful girl

amanda, dale, & krys at the beach

the parents at our biggest dinner out. mom even got a crab hat for her birthday.

Oli gets in his zone and throws sand at anyone who comes near him.

We love vacation! This year, we got to go to the Outer Banks of NC with our whole family! Mom, Dale, Beth, Krys, Amanda, Mike, Tim, me and the kids all drove down (9 hours) to the beautiful and quiet beach town of Duck. There is no boardwalk, which disappointed Mac at first, but we had a huge house, our own pool, and a short walk to the beach. Tim was supposed to leave on Tuesday, but was able to stay the whole time.

Some highlights include:

1. Waverunners -- Everyone (except me and Oli) taking out waverunners and zooming around the bay (inlet? bay? whatever -- it was water). I am a worrier, and it has been brought to my attention that I am a little over protective of the kids. I did not like the idea of Mac going out, but since she would be with Tim, decided it would be okay. I was literally in tears as they headed out, but she loved it.

2. Mom's birthday - Since Mike and Amanda had to leave on Tuesday, we celebrated Mom's birthday with a great dinner of grilled steaks, chicken, and salmon. Mike cooked it and it was delicious. More and more, I feel like a good home cooked meal beats going out to eat any day.

3. Beer Pong -- Later that night, we (minus Krys and the kids) played beer pong. Despite my love of drinking in college, I never really played beer pong. Mom never played, either, but it turns out she is a natural!

4. Riding the waves -- A favorite since I was little. This summer I have enjoyed taking Mac in the ocean a few times, but we stay pretty shallow. This time, I got to go far out with Mike, Tim, and Beth. It was great until my bathing suit top came off. Luckily I caught it before anyone else did.

5. Ice cream -- Ice cream every day!! Nothing says vacation like continuous ice cream!

6. GI Joe -- Okay, not necessarily a highlight in an of itself, but Tim and I went to a midnight showing of GI Joe. It wasn't a bad movie, I managed to stay awake, and it was the first movie I've seen in the theater in quite a while.

7. Candy Land -- I almost forgot. Candy Land is Mac's favorite game right now, and we played it constantly. The aunts were her favorite partners, since I am old hat, and I'm sure they will be quite happy not to hear the terms "double red" or "Queen Frostine" any time in the next few years. Luckily, Mac has finally embraced losing, or at least has learned how to be a gracious loser. Believe me, that was a long fought battle, and I'm not sure it applies to any situation other than Candy Land. But she is a fun opponent and I'm glad to see her enjoying the game.
I've realized that it doesn't even matter where we go when we are all together (even though we go great places!!), it is just fun having the time together.

Queen of the Ring

2009-07-22T09:56:00.002-05:00

Mackensie strikes again! In her second official taekwondo tournament, Mackensie took a Tiny Tiger trophy for her excellent, black belt high block. She really does a great job at tournaments. They challenge kids in a few ways, including:

1. getting up super early -- line up is 8:30 a.m., and the tournament is usually 30-40 minutes away. Maybe not a challenge for most kids, but mine don't sleep at night, so they like to make it up in the morning. Mac usually rolls out of bed at 8:30. It was especially challenging to get up early for this tournament, because Mac was also coming off of a mega-tantrum the night before. She handled it like a champ, though, and got dressed and into the car in record time. A quick stop at dunkin donuts and I had her fueled up on Munchkins and ready to go. Of course, Tim forgot to mention that the tournament was at a different location than usual, so we went 15 minutes in the wrong direction before finding out where we were supposed to be going. We got there a little late, but it helps to know people. The tournamet host was a friend of Tim's, and Tim was already there and waiting for us, so we got right in to a ring that had just started.

2. sitting still in a line to wait her turn -- ideally, they also want the kids to fold their hands across their chests "like a master." And Mac actually bought it. She sat still, and clapped and cheered for other kids when appropriate.

3. feats of athleticism -- mac has this sewn up. although she has inherited some clumsiness from me (and tim is actually pretty accident prone, too) she is also really good at taekwondo, and learns how to do her moves really quickly and accurately. although she doesn't always remember all of her moves in sequence, yet, she does them with great precision. in Tiny Tigers rings, the "judge" does the moves with every student, and then picks the best part of their form as a basis for the trophy. So while Mac got her trophy for her high block, others got trophys for their "awesome front kick," "black belt attitude," or "loud yell."

In the end, every kid gets a trophy and it is a truly gratifying experience. I really enjoy taking Mac to tournaments, and I have to think that it is a really fulfilling experience for Tim.

Another Big Week for Oli

2009-07-19T21:20:00.004-05:00

We've had another busy week. This time, it was full of doctor's appointments for Oliver. Nothing serious, but stuff that was important to get out of the way. On Tuesday, we went for a PT evaluation at Children's Specialized Hospital. Our PT, Ruth, recommended it since Oli is at such a crucial stage in terms of mobility. This evaluation was to qualify him for outpatient therapy at a "baby gym." We met with a really nice physical therapist who played with Oli for an hour. She seemed pleased with what he could do, but recommended him for two sessions a week. It has to go through insurance first, but we will hopefully have Oli hitting the gym in just a few weeks. We should also be getting his walker this week, so he will be movin and groovin.

Oli also had a hearing evaluation this week. It was quick and simple, and he slept through it. His hearing is fine. We did thi because every time I bring up delayed speech to his developmental intervention therapist or neurosurgery, they ask if we have had his hearing check. It is something to check of the list before we can look to other reasons for his delayed speech. At age two, he will qualify for speech therapy through early intervention. Now, we are ready to get started.

Oli has had a boost in speech in the last few weeks. "No," "more," "down," "out," "moo," "woof," meow," "up," and a few others. I'm hoping that this is the beginning of his road to full speech. I can tell he has a lot to say; maybe he just doesn't know how to get it out.

Tim is World Champ in Sparring!

2009-06-26T16:51:00.002-05:00

It was a long, hard battle (four matches, two of them against really strong competitors), and certainly a long time coming (19 places in Top 10, 5 Silvers, and 5 bronzes over fifteen years) but he did it!

The day started off slow, with one of his students losing and Tim taking third place in forms. Of course, we felt he was robbed of first in forms, so I think that we were all a little discouraged going into sparring. He won his first match easily, and had his second match against Eric, a friend who pretty much always wins his sparring matches. But Tim beat him 2 to 1 and moved on. He then sparred the guy who took first in forms earlier in the day. This guy was at least 6 or 7 inches smaller than Tim, so Tim won that match pretty easily. Finally, it was the match for first and second place against his friend John. John is an excellent sparrer and a really nice person. Tim started the match strong and was up 4-2, when John did a jump kick to the head, which is worth three points. My stomach dropped, only one judge called for the full three points, while the second judge called for two points, and the third judge for no points. Since John didn't actually make contact, it probably should have been no points, but he wound up getting the 2. So it was a tied match -- the next person to score would be world champ... Tim snuck in with a punch to the stomach and it was all over. It was amazing!

What is great is that win or lose, almost everyone here has a really good attitude. Tim was fine (albeit disappointed) when he took third in forms, John was probably disappointed that he wound up taking second, but everyone laughed and joked and shook hands. That is how it should be.

Tim also tested for and got his sixth degree black belt this week, so this has been our best trip off all time so far.

A lot of Tim's friends won world champ in other events/divisions, so it was a good day all around. This is the fulfillment of a lifelong dream for Tim, and I couldn't be happier or more proud.

Sniper's Close Call

2009-05-18T10:42:00.003-05:00

Admittedly, we have been a bit lazy about letting Sniper off leash lately. Since we don't have a door that opens directly into the fenced in part of our yard, the alternative is to walk Sniper out on a leash, wait while she does her thing, and then bring her back inside. Sometimes this is long and inconvenient, especially when the kids are waiting/eating/crying/killing each other inside. So, as Sniper proved her maturity by peeing and coming directly back in, we have let her go outside on her own.

Lately, she has been wandering over to the neighbors yard. This is especially mortifying because our neighbor keeps a nice yard, and surely doesn't want dog poop on it. Sniper doesn't really listen to me, but usually Tim can get her back on our property pretty quickly.

And this is what was happening on Saturday morning. I let Sniper out first thing in the morning and she promptly headed over to our neighbors yard. But instead of going in the back, she went to the front. I ran to get Tim, and by the time he got out there, she had wandered (or rolled -- we are on a hill) down to the street. Tim got outside in time to hear the impact and hear her cry. He yelled for me, and as he did, I heard her cry, as well. I wasn't sure what it was until he came running up the driveway carrying Sniper and saying "She got hit by a car."

In that second, I looked at her and saw that she was conscious and breathing and seemed okay. I kept asking if she was okay, and he kept telling me she got hit by a car. I went to call the vet, but I couldn't even remember their name to look them up. Once I found their number in my address book and dialed, I could hardly tell them our name. Luckily they had us come right in. I was afraid to touch Sniper because I didn't know if she was okay. So I had Tim load her in the car and off we went.

By the time we got to the vet, I could kind of tell that Sniper was okay. She had been standing on all fours at home and was conscious. She wanted to jump out of the car when we got to the vet's office and seemed fine in the waiting room. I was afraid she was going to convulse or collapse because of hidden injuries, but she continued to seem okay.

The vet was so nice -- it is really a place that loves animals. They checked her over, declared her stable, and did some x-rays. Nothing was wrong other than a broken tooth and a dilated left pupil. They think that her pupil will be okay (and it seems to be), and that she will be fine.

Since we've been home, Sniper has been jumping and running around like nothing happened. She is truly the luckiest dog ever. And even though she has gone back to 100% naughty dog behavior, we feel like the luckiest parents, too.

Update

2009-05-15T12:45:00.003-05:00

So Wednesday was a verry long day, but with very good results. The MRI showed that although Oli's brain has changed a bit since his last MRI, they do not see any obvious reasons for seizures or the need for a shunt. This is such a relief, since I really thought that we might be going the way of a shunt. He also hasn't had any seizure-like activity in almost a week, so I am hoping that has passed, as well. As always, we are in a wait and see phase. But I'll take that over needing to to get a shunt or seeing a problem that could be causing the seizures. We are going to follow up with neurology, although the wait time for an appointment is insane.

The whole MRI process took so long on Wednesday that we wound up missing our clinic appointment. But Oli did get his new AFOs (ankle-foot orthotics) and got measured for his KAFOs (braces that extend AFOs to brace the knee and support the hips). He has been doing extremely well learning to stand since we took his full casts off two weeks ago, and I am hoping that the KAFOs will give him the support he needs to stand on his own. I don't really know what to expect in terms of him standing or walking (more "wait and see"), but he has exceeded our expectations at every turn. Hopefully he will continue to do so.

To make the KAFOs, the orthotist had to make a mold of Oli's butt. I made Tim take a picture and will upload it as soon as I get it off of his phone. I felt silly enough taking a picture, but really wanted to ask if we could have the mold when they were done with it. Luckily, I restrained myself.

Our next steps are to follow up with neurology, reschedule clinic, and make a hearing test to see if that can explain his minor delay in speaking. Getting through Wednesday was a big deal, and I'm excited to keep moving forward.

Just to be on the safe side...

2009-05-11T14:46:00.002-05:00

Any time a week starts out slow, the action picks up before we know it.

This week started with a 5/13 appointment for Oliver to pick up his braces. YES! FINALLY! I'm so excited. I can't wait to see those little feet on a daily basis. Plus, his casts are so disgusting now (covered in dirt, Popsicle, and maybe even a little poop) that I need them to come off. Then, because I raised the question of whether or not he would need knee braces to stand, we added a spinda bifida clinic visit so that the PT could check him and possibly have him measured for KAFOs, or knee braces. And today, we added an MRI.

Two times in the past week and a half, Oli has had an episode where his head goes kind of limp, his eyes flutter, and he is unresponsive for a minute (or less). I have not seen this happen, but Tim's mom has seen it twice. She was pretty freaked out by it, so I called neurosurgery today and they ordered an MRI immediately. Debbie, the Neurosurgery NP, said it sounds like seizure activity. This is the second time we have suspected Oli of seizures. The first time turned out to be nothing. Oli does have a wierd habit of getting "lost in space" for a minute now and then. Combined with these two episodes, it seems like a good idea to have an MRI. They will check for both increased ventricle size and any changes in his chiari malformation. So this could have implications for seizures and shunting.

It's hard for me to wrap my mind around it, because I haven't seen it. It happened the other day when I was home, but he was outside with Tim's mom. She brought him inside immediately afterwards, and he seemed fine. But I know what it is like to see him do something unusual, and it is very unsettling.

We just got the all clear for six months between neuro appointments, which is longer than we've ever gone. And now we're back only three weeks later. Please pray that it is nothing serious.

Sunny Days, Everything's A-OK

2009-04-28T21:38:00.003-05:00

We have been enjoying a heat wave lately, and at the Chewning house, we have taken advantage of it. Friday was Nanny's birthday, so we had a picnic at the park. Saturday was Rutgers Day, so we went to Ag Field Day on Cook Campus. We even got a fish.

But the biggest day of the weekend was Sunday, when we went to Sesame Place. I got an e-mail earlier in the week saying that it was free for children with disabilities. We were planning on taking the kids anyway this summer, so I figured we might as well try it for free. I didn't tell the kids what where we were going, and Mac didn't know until we pulled into the parking lot and saw Big Bird's face on the parking signs.

Just like when we went to Disney for the first time with Mac, it was sort of surreal being someplace that I could remember going when I was a kid, but now being there as a parent. I remember the shadow wall (which is gone now!), the cardboard pizza, some sort of balance beam with water shooting out, and , of course, the ropes.

Things have definitely changed, but some of my memories held up. The first thing I noticed was how flat and sort of small it is. You can see the buildings and hotels surrounding the park, which makes it seem less "fantastic" and more blah. But even though it seemed small, we didn't get through everything at all. Mac went in the wading pool, climbed a "beach ball" mountain, and went CRAZY on the ropes. I went on them with her, afraid that she wouldn't be able to get far. First of all, I am too big, old, and scaredy for the ropes. Especially the tunnels -- I could literally barely fit through them. So that, combined with the fact that Mac could scale the ropes like a monkey, gave her a big lead on me. I wound up losing her going through one of the sets of tunnels, and couldn't find her. At one point, I could see her a level below me. I yelled to her, and I thought she heard me, but she just got off at the platform and started to go down the stairs. I started to plow down kids through the next tunnel trying to get to my platform (one level up) to get to her. I finally caught her, but it was a scary (and painful -- my knees are all scraped up) experience.

All in all, it was a great time. And a great weekend. And Sesame Place was, in fact, free (overpriced parking and food notwithstanding).

What is wrong with this picture?

2009-04-22T15:49:00.002-05:00

a.) One couple shouldn't have two kids who are so darn cute.
b.) There are no parents in this bed, yet, it is the parents' bed.
c.) Nothing -- as long as the kids are sleeping, it's all good.

While we are very fortunate to have two cute kids, and it really is all good when kids are asleep (in general), the correct answer is B. I have chronicled our sleeping mishaps over the last year or two, so you probably know that sleep is a rare and precious commodity at our house. Indeed, I wouldn't know a full night's sleep if I got one (which I won't) and think that anyone who gets a full night's sleep has no right to complain about anything, ever. But that is beside the point. Mac and Oliver now both sleep in our bed, and there is just not enough room.

I have managed to enforce one rule -- everyone starts in his or her own bed. Laughable, but it buys me some time and sanity. This morning, we made it to 4:30 before both kids were in bed with us. A near record. That was 4 1/2 hours of uninterrupted sleep (for me). Once Oliver comes in, he falls right to sleep (of course, he has to pinch my neck while he is doing it). Mac, who is scared of monsters and shadows, still can take an hour or more to fall asleep, even after coming into our bed. This is no different than when we made her sleep in her own bed, except that there is less crying and back and forth. But I am convinced that she is not doing it for attention, but rather because she has real sleep issues. And I don't know what to do about it.

Am I spineless? A little. Crunchy granola co-sleeper? Partly; I actually like sleeping with the kids (when they sleep) and think that it is okay if both partners agree. Regretful that I let it get this far? Sometimes. I would like for them to be able to sleep on their own, and fear that I am not teaching/giving them that skill. Ambivalent? Not in that I don't care, but in that I can't decide what the right thing is to do. Tired? YES -- and that supersedes everything else.

So we are still without a solution and I'm more confused than ever about our sleeping arrangements. At least the kids seem happy in our room. And look how peacefully they are sleeping by the time I have to get up in the morning.

Look at My Girl Go!!

2009-04-21T15:49:00.004-05:00

Here is Mac at her first big tournament. The file of her competing was too big, so this will have to do. She did awesome (of course)! She got her trophy for her jump front kick. I tried to upload video, but it didn't work. Still pictures will have to do.

PS - This is a double posting day. Check out the post below for an update on Oli's feet.

Damn It!

2009-04-21T15:38:00.003-05:00

Oli showing off his post-op feet at the doctor's office. Check out his cute clothe diaper, too :)

A bit much, but that's how I feel. Oliver had his post-op follow up from his orthopaedic surgery. I rescheduled the appointment so that it was early enough that I could go before work. I thought for sure that Oli would be going home in his old braces, or fitted for new ones. But the doctor walked in and hardly even looked at his feet before casting. I personally think that he forgot Oli was post-op. So I brought up the braces right away and he said that Oli isn't ready for them yet. Maybe two or three more weeks and then he can be fitted.

We also talked about whether or not his knees will need to be braced. They don't quite lock into place, so I've been told in the past that he will need knee bracing. Of course, I would prefer that he only needs bracing to his ankles (AFOs), but whatever gets him standing. This little man is ready to go! The doctor said that he will only cast to the knee next week, so that we can try to get him standing without the support of the casts to see what he is capable of.

Disappointing but not the end of the world.

It's All Good

2009-04-03T22:45:00.003-05:00

Oli gets ready for surgery in his cool gown. This is before the "giggle juice."

So because big events don't happen one at a time in our household, we've had quite a busy week. Oliver had successful foot surgery, and so far the casts haven't slipped off. We're hoping this means that in four weeks, he will be back in braces. This was Oli's first surgery in a year. He handled it really well. To prep him, they gave him "giggle juice," which must have been a pretty potent cocktail. He got all gooey and giggly. His eyes were slits and he had his squishy smile. He let me hold and snuggle him the whole time. I thought it was funny; Tim thought I was crazy. But the faces Oli was making were priceless, even if he was doped up. Of course I cried when he went into surgery. He slept for a while in recovery and was kind of out of it when he woke up. He wouldn't drink anything so he got to try an ice pop. He loved it and one quickly turned into two. Mac would have been so jealous! He had some of the breathing issues that he has had from the anesthesia in the past, but overall was good to go about two hours later. By the next day he was crawling around and you would never know that he had just had surgery.

The day before Oli's surgery, I defended my dissertation to my committee -- and I passed! This is a huge weight off of my shoulders and basically clears me for graduation in May. Mackensie tested for her orange belt decided in taekwondo, and passed with flying colors. Today Tim had leadership night at the karate school and I had my public dissertation presentation.

In short, everything went well. We are all in a better place than we were last week. It feels good.

These Feet Were Made for Walkin'

2009-03-17T07:55:00.004-05:00

But we just haven't gotten there yet. Mostly because Oli's cute little feet are clubbed, which means they point inward, rather than lay flat at a 90 degree angle. We have gone through months and months of casting, the most recent round of which has been going on since January. When we started in January, we acknowledged that we were trying casting again instead of using invasive procedures, since Oli is still growing and that could complicate the results of some of the possible procedures (like inserting a rod in the ankle to keep it in the right position).

It turns out that Oli has some stubborn feet, and the orthopedist decided that tendon release surgery may be the answer. You may remember that we did this once in 12/07, and it didn't do much good. When we initially started casting in January, the ortho said that there was so much scar tissue that another surgery wasn't a good option. But I guess he changed his mind...

So Oli goes in for surgery on March 27. We thought it would take months to get on the surgery schedule, but we are going in a week and a half! The good thing about the timing is that he should be out of casts (which he has to wear for 6-8 weeks for recovery) in time for summer. These feet were made for swimmin, too...

False Alarm (aka Mom is Crazy)

2009-03-07T17:49:00.003-05:00

Do my eyes look crossed to you?

This picture is what happens when mommy tries to diagnose Oliver by sending his picture to other people and asking what they think. For the record, this picture does not show is eyes with the "crossed" look that had me in a panic.

So, anyone who knows me knows that I have some neurotic tendencies.

Add to those tendencies a medically "needy" baby, and you have a recipe for disaster. Let me pat myself on the back and say that I have done phenomenally well over the last year and a half in terms of not over-reacting to too many issues and rushing Oliver off to the neurosurgeon at the slightest bit of crankiness. Even the never-diagnosed "seizures" of last summer were acknowledged by the neurologist as something unusual to see, even though they did not track as anything significant on the EEG. But the idea of possible hydrocephalus hanging over my head (or, more accurately, Oliver's head) is something that weighs on me daily.

Last Sunday, I could swear that I saw Oliver's right eyeball (not sure of the medical term) sort of straying into the center. It was subtle, but there were two or three distinct times that I thought I caught it. But I couldn't swear to anything. While Tim didn't really see that, he did think that Oliver had an "unfocused and vacant" look to his eyes that day. We let it go for a day or two, but a couple of times I thought I saw this eye straying. Then on Tuesday he threw up. It was not full-on puking but was "projectile something" coming from his mouth. Both symptoms (eyes and vomit) can be signs of hydrocephalus. So I pulled the alarm and called the neurosurgeon.

We typically deal with a nurse practitioner to the neurosurgeon at CHOP. The entire office operates under the premise of treating the kid, not the "film" (MRI, scan, etc.). So even though we know Oliver has a significant amount of fluid in his little head, we don't take action (ie shunt) until he shows signs of pressure. I think that this has worked out well so far; other doctors may have shunted him by now, and he is currently progressing fine without one. However, now we were dealing with signs of pressure. But the NP wasn't convinced that they were actually signs, so she told me to hold off and watch him. I wasn't very happy, but since I couldn't swear that his eyes were crossing, and it was more spit up than vomit, I complied.

We did take Oliver to the eye docotor to check for pappiladema, or pressure on the optic nerve. This is another, more concrete, tell sign of pressure. The doctor looked him over pretty well, and said that while he has a "cross eyed look," Oliver's eyes are not crossing. Further, there was no evidence of pappiladema. Of course, he did call Oliver "she" for the second half of the appointment, so I'm not sure how accurate the exam was. We took Oliver back home, very relieved and a little sheepish.

So a crisis averted. It feels good, even though I feel like I've slipped down a bit in crediblity. And now today Oliver is cranky and I can swear that he is not crawling as well as he normally does. Could something be wrong? Or am I just crazy? Luckily, I'm fairly certain it's the latter.

All Grown Up: Birthdays and First Kisses

2009-02-28T17:28:00.003-05:00

So I step away from a while and one of my kids turns 4, while the other manages to sneak in a first kiss. No joke.

I'll start with the natural progression; I'm a sucker for mushy retrospectives. My amazing and wonderful first-born has turned four. This takes her securely out of the realm of toddler and into the realm of "kid." And it fits her well. Like many young girls, she is "four going on twenty-four." In the past year she has gone from an adorable but tantrum-prone toddler into a precocious, smart young lady. Although she has always had a personality, it is becoming refined into a real sense of self. Mac is cool and fun to hang out with. She has insight. She has a sense of humor. She can still throw a wicked tantrum, and I wouldn't exactly label her as "mature," but I can say that I would like her even if she wasn't my kid. And since she is my kid, I think that she is just about the best thing ever.

Oliver, meanwhile, has continued to mature along his own path. While we are still waiting for his first words, he managed to sneak in his first kiss* the other day. I took the kids to a local restaurant to pick up a gift certificate. While we were waiting for the owner to come back with the gift card, I let Oliver and Mac play on the ground with a few other kids hanging out up front. It was three little girls; all of them came crowding around Oliver, trying to touch him and saying things like "look at the cute baby." Mac played the role of the proud sister, kind of waving her hand around him like he was a prize in the Showcase Showdown on the Price is Right. One of the kids was the adorable little girl of the owner. I guess she is probably around two years old. She bent down right in front of Oliver. I looked away for a second, and when I looked back, Oliver was giving her his little hen-peck kisses on the lips! What a little player! I don't know who initiated the interaction, but I do know that he shared his first kiss with an "older woman" named Sophia.

And so my little ones continue to grow up at an alarming speed. I guess the time always goes by too quickly.

* Oliver's first kiss was really with mommy. He gives cute little kisses where he stretches his neck forward and pecks at your face like a little hen. Sometimes he puckers, and sometimes he just opens his mouth and kind of sucks on your cheek. He gives out lots of kisses. But this was his first kiss with a stranger of the opposite sex.

Sleep Rules

2008-11-25T09:26:00.002-05:00

Yet again, my children have declared a sleep strike. Mac now starts crying in the car when I pick her up after work because she does not want to go to bed. This is before we even eat dinner. Why? Who knows, but the primary reason seems to be that she is afraid of the dark. She has two nightlights -- any more, and it would be too bright to sleep. So I now have to drop Oliver in his crib and go lay with her until she falls asleep at night.

Now, we never really transitioned Oliver out of our bed into his own. He always starts out in his crib, and then comes in with us around midnight. No big deal -- I love the snuggles. This goes for both of them -- I figure soon will come the day when they won't even want me around, or want to give me hugs in public. I might as well take the love while I can get it. But anyway, lately Oliver either won't go down at all, or goes to sleep for about an hour, and then wakes up and screams. Since I don't want him to wake up Mac (who often has just fallen asleep) I grab him and bring him out with me. Then, when I go to bed, he comes with me. I know, I know -- a really bad habit.

So in the middle of all of this, Mac has decided that she wants to sleep with us, too. I can't say no, because Oliver does. But the one rule that I have managed to enforce is that each person starts out in his or her own bed. Sometimes that works and Mac sleeps through the night, none the wiser and never joining the rest of us (including Sniper) in our room. And those are the best nights, because, as much as I love Mac, she is very hard to sleep with. Why? Because she kicks, squirms, talks, and has rules. Rules, you ask? Yes, rules. They are as follows:

1. You can't breathe on her face, but...
2. You have to face her. You can't turn away and face the wall, no matter how long you have been laying on your side.
3. You can't breathe on her arm (I just learned this one this morning).
4. You can't have on any covers that she doesn't want on (sometimes she doesn't want the sheet, sometimes she doesn't want the comforter).
5. You can't always sleep on the pillow if she doesn't think there is enough room.
6. You can't curl up your knees because then she can't put her legs down straight.

And let me assure you that these rules are quite often enforced with a loud stage whisper, whiny pout, outright shriek, or crying that resonates through a quiet, sleeping house like a tornado. Tim and I are trying to figure out how to lay the smack down and get this all under control, but we are, quite frankly, too tired. At this point, I'm wondering if I should just start to price king sized beds and call it a day.

The Best

2008-11-20T12:11:00.002-05:00

Every night as I tuck the kids into bed and go through the whole bedtime routine (which went horribly wrong last night, by the way) I am struck by two things: the first is how good soft, warm little bodies feel in cotton jammies. Not the soft, fleece jammies (although those are so nice to wear), but the cotton jammies that are thicker than in the summertime, but not too thick. After a kid has had them on for a few minutes, they heat right up and get really soft. So you have soft, warm little bodies in soft, warm little jammies. Really, there is nothing better.

But then after you put the soft, warm little bodies in bed, read them books, get them vitamins, water, pacifiers, and check on them at least five times, they usually (eventually) fall asleep. And then you get the second thing: how good the even, sleepy breathing of kids and babies sounds. When babies are little, and you check on them every five minutes, that sound is so reassuring. And when babies turn into toddlers, and going to bed is an exhausting, tenuous venture, that sound is so relaxing. And I can never help but put my hand on the back or stomach of the soft, warm body, and listen to it breathe as I feel the chest rise and fall. And I thank God that I am a mommy, their mommy, as I do this every single night.

Our Trip to New Hampshire (a.k.a. How Many Times Can we Eat at McDonald's in One Weekend)

2008-11-10T22:20:00.002-05:00

This weekend we had a family road trip! Tim has been actively competing this year in hopes of placing in Top 10 and being able to compete for World Champ in tae kwon do. The way it works is that you compete in as many tournaments as possible all year (July-June) in any or all of the following categories: forms, weapons, sparring, extreme forms, and extreme weapons. For each first, second, or third place that you take, you get a certain number of points. The ten people with the most points at the end of the year for each age group and rank compete for world champ at (where else?) World Championships in (where else) Little Rock, AK. Tim is currently ranked number 2 in forms and sparring for men's black belts 30-39 (my little one turns 30 this year :) I have also dusted off my nunchucks and started competing again, too.

This weekend's tournament was in New Hampshire and we decided to make a family trip out of it. We did this in Deleware a few weeks ago, and it worked well. The key is an indoor pool. The kids love it. We all go to the tournament and Tim and I compete first thing in the morning. Then I head back to the hotel with the kids and swim while Tim judges.

We headed up Friday night after I got out of work. Stopped at McDonald's for dinner. A rare treat, and I looove cheeseburger happy meals. We got in late, went to bed, and competed the next morning. I only had one other person in my ring. So I got second in forms and first in sparring. And, by default, first in weapons. Tim took four firsts and a third.

According to plan, I took the kids back to the hotel and got them suited up. We couldn't find the indoor pool (whose existence we had confirmed before booking), so we headed down to the lobby complete with bathing suits and blow up duck. Only to find out there was no pool. Mac handled it extremely well, and we found a Burger King playland instead.Then we stopped at McDonald's fo ice cream. When Tim got back we headed to Boston for dinner, which was really exciting. Then back to our hotel.

We had a delicious McDonald's breakfast Sunday morning, and all was relaxing until we hit the road to go home. 20 minutes into the trip, Mac projectile vomited ALL OVER the back seat. I can't describe how gross it really was. And the worst part was, we had the next 7 (yes 7) hours to smell it on the way home.

Happy Halloween

2008-11-01T13:40:00.009-05:00

Asked and Answered

2008-10-27T20:35:00.003-05:00

It's been a jam packed fall so far. To say that we have hardly a second of downtime is an understatement. Overall, things are good. The kids are well; we've had an ear infection and some spina bifida related issues, but we're pretty much back on track. Work is going well for me -- I really like Penn State, I'm getting into the groove of teaching, and I have three separate routes to school (just in case there is traffic). Tim has been competing in tournaments, and has taken a lot of firsts and seconds -- if he stays on this track, he will be able to compete for world champ again this year. I even competed in a tournament for the first time since before Mac was born, and got two third places and a second place. We also participated in our first annual Spina Bifida Stroll n Roll, which was so rainy that we actually spent the walk in a coffee shop instead of actually walking. At least we showed up -- maybe next year we'll actually participate.

As always, the kids keep me busy, and motherhood is always a learning experience. Some questions that I have gotten the answers to in the last few weeks:

Q: What happens when you cut yourself with safety scissors?
A: Mac was nice enough to figure this one out for me. The short answer is you bleed. A lot. Mac was making a birthday card for gram gram (my grandma), and I was mopping and running a bath for her and Oliver. So I was in the room, but not fully attending to Mac. Let me stop to say that she is usually trustworthy; way above doing silly and dangerous things. Never had a phase of putting things in her mouth (Oliver) or touching things she isn't supposed to. But when I looked over to tell her it was bath time, she had blood dripping down her chin. Scissors still in hand. Very calm. The second I asked her what happened, she started crying and didn't stop all the way through her bath until she was dressed. When I asked her what happened, she said "I wanted to see if it would cut." Well...it does. She has since recanted her story and said that she didn't do it on purpose. Mmmhmm.

Q: When is diarrhea not diarrhea?
A: Gross, but pertinent. Diarrhea is not diarrhea when you are so constipated that only mushy poop can leak out. Poor Oliver had to teach me that lesson. Constipation is a common condition with spina bifida, because the trunk muscles are often not strong enough to push the food through the intestines and colon in a speedy manner, which means that most of the water gets sucked out of the food, creating really hard stool. So Oliver is on a daily laxative. But when he started to have diarrhea, I cut back on the laxitive thinking it was too much. Wrong. One bloody diaper later, I have him at the doctors office, followed by x-rays, to find out that he was completely "backed up." Poor guy -- a week of enimas and a new, stronger laxative later, we finally got back on track. Who knew?

Q: How many times can you use the word "berry" to replace "very?"
A: In the average Strawberry Shortcake book, berry replaces very or fairy 10 times. Not to mention the literal use of the word, as in "berry princess" or "berry patch." Berry, berry annoying.

I'm sure I've learned more. But I'm too tired to remember. However, it hasn't been all work this fall. We've really tried to take advantage of seasonal activities, like pumpkin and apple picking, Octoberfest, and Homecoming. And we have some great plans coming up. Never dull, sometimes fun, always interesting.

See You Later, Summer!

2008-09-02T20:51:00.005-05:00

As the last days of summer wind down, I can't help but think that it flew by this year! Never has a summer gone so quickly. And I guess that's because we did really good stuff! We had play dates, went to Disney World, went to the park, went to the shore, ate ice cream, went swimming, turned 33 (ugh) and turned 1. That doesn't even count working! No wonder the time went so fast. A brief retrospective...

Naked Baby!

2008-08-26T10:38:00.002-05:00

Well, sort of. Naked legs, anyway. A few weeks ago, we started serial-casting Oliver again (putting casts on his legs for a week, taking him back, changing the casts) because his feet had started migrating back to the club foot position. For two weeks, it worked great. Then, on Saturday, off slipped his left cast. This has always been our problem -- when he was being casted from August-December, his casts always fell off. After his surgery in December, his casts didn't even stay on a week before they slipped off. Same thing with his AFOs (braces), which is why he hasn't been wearing them, which is why his feet have turned back. A vicious cycle. Since I had to work yesterday, Tim had to take him to King of Prussia (far, far away in PA) to get the cast replaced, because that is where our orthopedist was yesterday. When Tim got there, he waited (as is customary when visiting this doctor). While he was waiting, the nurse took off Oliver's remaining cast, saying that the doctor would just replace both casts today so that we didn't have to come back Friday.

Fast forward to the doctor coming in, looking at Oliver's feet and saying "I give up." Um, excuse me? Seriously, that's the last thing a parent wants to hear. I get what he is saying, but his delivery/attitude could be a bit better. This is the same man who called Oliver's legs obese (UM, EXCUSE ME?!), so we have to take it with a grain of salt. What he should have said was that his feet aren't in much better position than they were when we started this round of casting, and the casts weren't staying on, anyway. Without the casts moving his feet into place, the AFOs won't fit. So what is there to do? A good question. His upper legs are "obese" because that's where his working muscles are. His calves and feet are smaller because he has no muscle tone there. So what are we going to do? What do other people do? The answer for now is to stretch, with probable surgery in the future. A totally unsatisfactory answer, because stretching alone is what got him back in the casts.

There are a few upsides to this. 1) Oliver is thrilled to see his feet again. You should see him kick them up when he is laying down. Very happy -- loves his feet. 2) Now that he is eating table food, I would find all sorts of food in his casts. Gross! This latest set was stained with orange ice-pop, anyway. 3) He can have bathes and go swimming! 4) We don't have to drive him to Philly every week.

We still have a great physical therapist, and hopefully, she will be able to help us compensate. I know that I am thinking too far ahead by wanting him to stand (for which he would need flat feet) since he isn't crawling yet. But now that he is officially falling behind in "regular baby" stuff, I am anxious to get him moving ahead. I guess this will be a constant tug as he grows up; balancing hopes and expectations with reality. But I would rather hope and push than wait and see.

My Son Plays with Dolls -- and that's OK!

2008-08-22T08:49:00.003-05:00

In the middle of sleep strikes, attitude problems, and messy dinners, my kids are able to break out with some pretty cute stuff. Oliver almost had me in tears last night. When I was getting the kids ready for bed, I put Oliver on his new couch (a little Sesame Street foldout couch that we bought him for his birthday). I left him there so I could go help Mac brush her teeth, and put one of her dolls next to him so that he could play. When I came back in, he was holding the doll across his lap and stroking her head. He was so tender and so cute. It was quite possibly the cutest thing that I have ever seen. I had no idea he could do that -- to me, it shows that he is capable of applying learned behavior to new situations. In the middle of worrying about his development, you have no idea how comforting that is. And even more importantly, it shows that he has compassion. Yes, I realize that I am probably the first mom every to be proud of her son for playing with dolls.

Not to be outdone, Mac later "read" a book to Oliver that I used to read to her. She is getting so good at memorizing books and reading them back. The book that she read to him was Moo, Ba, La,La,La by Sandra Boynton. It was her favorite for a long time when she was just a little bit older than he is now. And now she is "reading" it to him. Last night, the little peanuts made me proud.

The Little Man Turns 1

2008-08-14T14:49:00.006-05:00

It had to happen some day. My little one has turned one. And what a happy, sweet, and special one he is! So much has been going on lately that I don't even know where to start. Our biggest news is, of course, Oliver's birthday. I spent yesterday in a mix of emotions; happiness that Oliver is growing up and progressing, wistfulness over the fact that he isn't so little anymore, gratitude that he is just doing so well. We spent part of yesterday at CHOP (where it all began!) because Oliver is back in casts so that his feet (hopefully) move back into a position in which he can comfortably wear his braces (they had started to move back because his braces always fell off, so nothing was really "holding" his feet in position). Now that he is one, I'm really hoping that we can get him to stand soon. Being at CHOP made me even more emotional, because it was so easy to picture the early days when Oliver was in the NICU. I wanted to peek in for a visit, but I thought that might qualify me as "crazy," so I just stuck to orthopedics and the cafeteria.

So what else is there? Oliver is also being reevaluat

ed for a shunt, because the MRI he had back in July showed that his ventricles are significantly larger than they were in his previous MRI (taken the week he was born). The neurologist at St. Peter's thinks that there is some urgency to getting a shunt, but the doctors at CHOP feel that as long as he is acting fine and acquiring new skills, he is okay for now. They said that he can have larger ventricles and more fluid, but as long as the fluid is "calm" and not putting pressure on his brain, things are okay. So I remain on "double secret alert," watching the poor guy fora host of symptoms, including crankiness, lethargy, skill loss, or missed milestones. Poor Oliver; one bad day and I'll probably have him back in the hospital for brain surgery.

We also had a whirlwind trip to Disney in which Mac met all of the princesses and Oliver fell in love with Mulan. We ate at the Princess Character breakfast, and the kids got to meet Belle, Mulan, Jasmine, Snow White, and Sleeping Beauty. I really only booked the breakfast for Mac's benefit, since she is a huge fan of the princesses. But one kiss from Mulan, and Oliver was hooked.

And so goes our summer. My semester starts next week. Nothing says fall is coming like pre-season football and the beginning of fall semester. Still chugging along on my dissertation. I wonder what will happen first -- the Jets get to the playoffs or I finish the dissertation. Now that we have Brett Favre, it's really anyone's guess...

Twilight Baby Days

2008-07-18T21:04:00.003-05:00

We are in what I consider the twilight baby days -- Oliver is so close to his first birthday! So much of his baby-ness is transforming into little boy habits. He has always had his own personality, but now it really shines through. He has a presence and an awareness about him. He can do so much, and he seems to have purpose. He's still squishy, but he's not a little baby.

I've been weaning him this week, too. We're working on drinking from a sippy cup, with a bottle sometimes. Breastfeeding was such a great experience -- I'm so glad it worked out. But this is just one more sign that he is growing up.

With Mac, I've felt that every age has been better than the last (although three has been rough). I have to keep that in mind -- as they grow, they only get better.

But even as he grows up, Oli will always be my little baby.

F*cking Ice Cream Man

2008-07-14T21:32:00.002-05:00

I know, it's a bit harsh, right? But every time I have Mac under control, he comes along with his stupid truck and it's instant tantrum. Let me contextualize this by saying that approximately 50% of our time is spent in a tantrum, 10% of our time is gearing up for a tantrum, and 20% of our time is spent recovering from a tantrum. So that leaves us a full 20% of peaceful time. And when we hit our state of zen, I don't want it interrupted.

Yesterday, I took the kids to the park. As soon as we pulled up, I saw the truck. There was nowhere to go but out of the car, so I parked as far away as I could and started to get the kids out of the car. But Mac's sugar sensor was on high alert, and she ID'd the truck right away. I cringed as she pointed it out. She was soo cute about it, too. She gets really excited when she hears the truck music. Now let me say that we had already had ice cream with lunch not thirty minutes earlier, so there was no way I was letting her get ice cream. Mean..maybe? But in taking stock of Mac's eating habits, I recently realized that she can log upwards of 2 or even 3 ice cream treats in one day if she spends different parts of the day with different family members. Each of us gives her a treat unaware that the other already did so. As a result, I'm really trying to make sure that her snack intake becomes more reasonable. Two ice creams in less than an hour does not constitute "reasonable."

Of course, this means nothing to Mac. As soon as I said no to the ice cream, the tears started. Don't get me wrong, I felt bad, but I wasn't going to budge on this. So she cried, told me she was mad at me, pointed out the truck a million times as it sat there for a ridiculously long amount of time. But finally the truck left and we were able to concentrate on playing.

Not an hour later that stupid truck came back. Talk about a mental head slap - I silently cursed him and prayed that Mac somehow wouldn't hear him. No such luck. She may not hear me talk when I am two feet away from her, but she could hear the truck from across the park. Seriously, why did he need to come back so soon. I take it personally, like they are trying to trap parents into buying treats by creating mass hysteria among all of the children. They figure that nobody can say no. Well, I can!

MRI Results

2008-07-08T20:59:00.002-05:00

So it was basically what I expected. The MRI showed that he has enlarged ventricles, but he is acting okay, so we are in a grey area as far as shunting is concerned. The neurologist called last week to let me know that there was no apparent reason for the seizure-like activity, which has pretty much stopped by now. It's still a relief that there is nothing abnormal showing up. However, the doctor did tell me that the film showed "moderate to severe" enlargement of the ventricles, with a rounding shape that is indicative of spina bifida. This isn't too surprising, since he has always had some swelling. They just didn't feel that it was enough to shunt him. The real tell would be if this MRI showed a significant difference from the MRI taken when he was born.

I called CHOP and they basically told me that they treat kids, not x-rays, and that if Oliver seems fine, then there probably is no reason to shunt him. They explained that just because the ventricles are enlarged, there isn't necessarily pressure. And pressure on the brain is what causes a problem. Their reasoning is that if he had pressure on the brain, there would be tell signs such as extreme lethargy or excitability, regression in his abilities, or vomiting. While he isn't doing any of this, I have heard of cases where babies who were shunted without any of these tell signs experienced dramatic improvements after receiving a shunt. Sort of like they were doing okay, but did so much better once they received the shunt. All of this said, I do feel like Oliver is doing really well -- making a lot of progress, really responsive, etc. So I sent the film to CHOP on Saturday for Monday delivery.

I called today to follow up. The first time I spoke to them they said that while the ventricles were enlarged, they saw no reason to change the course of treatment. However, they must not have really looked, because they called back an hour later to say that upon looking at them further, there is some change between the first MRI (taken when he was born) and the most recent. What does this mean? That I should put my radar up. While I appreciate the fact that I should just be more attentive to his signs than usual, I feel like I'm on double secret probation. It's like telling me not just to worry, but to really worry. But not to do anything, either. They did move my appointment up from the end of August to the first week. And on their recommendation, I'm seeing a pediatric opthamologist tomorrow. Pressure on the optic nerve is another sign of swelling, so we'll see what this doctor has to say.

So no huge surprises, but definitely an uncomfortable grey space. I just hope my little man is okay.

We Love Nurses

2008-07-01T16:59:00.002-05:00

There are lots of things that I love, love, love, and today nurses are at the top of my list. I've actually loved nurses since the day I gave birth to Mackensie -- the labor and delivery nurses were so comforting, and I was amazed that a stranger could be that kind and willing to so completely care for me (anyone who has given birth, and maybe some who haven't, knows what kind of yuck is involved in that, and nurses clean it up and hold your hand through all of it). Since we've had Oliver, actually since his diagnosis in-utero, we have had a chance to interact with many, many nurses. Without exception, they have all been so great. After each extended interaction, I'm so grateful and just want to give them a hug. We actually did give the NICU nurses a basket of chocolate and snacks, although they deserved so much more. But today was Oliver's MRI, so it was back to the hospital. We didn't go all the way to CHOP, but stayed local instead. The nurses were, as usual, great. They were super careful inserting his IV, which anesthesiologists have not been able to do so well in the past (because he is so "well-fed"). They collapsed one vein, but considering what a pudge he is, that isn't so bad. They let me ride down to radiology on the stretcher with him so that I could hold him, and sat patiently with me watching his vital signs when the MRI was done. Our nurse explained that if they saw anything of concern, they would likely call today. And very fortunately, I haven't gotten a call so far. I do know that this doctor keeps late hours, as he has called me at 8 on a Friday evening in the past, but I'm hoping we're in the clear. And by in the clear I'm hoping for no abnormalities that could contribute to seizures (actually, no abnormalities at all) and no need for a shunt. Although I don't think this doctor would evaluate him in terms of hydrocephalus, but I'm sending the films to CHOP for their opinion, as well.

So today I'm thankful for a successful hospital visit, no complications with anesthesia, no phone call yet, and, of course, nurses.

We All Scream for Ice Cream

2008-06-17T21:17:00.004-05:00

You can have barbecue, stay outside with some daylight until 9 p.m., and even turn on the air conditioning, but nothing says summer like going down to the shore. Tim doesn't really like the beach, but I think that seven years of whining to go have finally worn him down. Plus Mac really likes it. So we went down to the boardwalk at Point Pleasant on Saturday as a birthday/father's day celebration. The difference between this year and last year is amazing -- Mac actually went on the rides this year. She even rode the helicopters that flew into air if you pull back the lever. She loved it!

And speaking of loving things, Oliver L-O-V-E-S ice cream. Just like we all do. I think everyone enjoyed the first Kohr's of the season a little too much.

We get a Break

2008-06-13T11:59:00.002-05:00

So Oliver's MRI got cancelled. Apparently, the machine broke down due to a power surge. I'm both disappointed and relieved. We'll have to reschedule in the near future, but for now, we can just enjoy the day.

Time for Prayers Again, Please

2008-06-12T06:46:00.003-05:00

You guessed it - Oliver is going to the doctor for another procedure. He is having a MRI as a follow up to his EEGs. He hasn't really done any of the twitching, but the doctor set this up a while ago. I feel like we should go trough with it since it should hopefully put the issue to rest, and also because an MRI will show if his hydrocephalus has gotten any worse. Since we still have no shunt, it is good to know how things are looking. Of course, since he doesn't show any signs of hydro, seeing it on the MRI would be disturbing because we would be left with a tough decision: if he has hydro but it doesn't seem to be causing any problems, do we leave it or fix it with a shunt? And, of course, the MRI requires sedation, which I HATE. It makes me so nervous (and usually causes some wheezing) every time. We are going to a local hospital, and he has never had anesthesia there. But I'm sure they know what they are doing...

So you can see why I am asking for prayers. Little or big it, it doesn't matter, I know God listens to them all :)

It's Been a While

2008-06-01T23:00:00.002-05:00

I realize that I have been negligent in posting. But I've been in kind of a funk and I have nothing productive to say. I think that I don't even know what I'm thinking or feeling, so I certainly don't know how to put it into words. We've been busy -- very busy. I've been so tired -- tired of feeling like I should be with the kids while I'm doing work, and tired of feeling like I should be doing work when I'm with the kids. And don't get me started on physically tired. And I've been worried -- worried that Mackensie has some serious emotional/behavioral issues, worried about everyone's health, worried that my dissertation isn't "relevant." And did I mention that I still haven't lost the belly fat from Oliver even though I've been working out regularly for maybe the second time in my life? That is so not going to last if I don't start seeing results.

But even though we've been existing in this haze of worry and disarray, we have had some exciting events. Tim and I celebrated our five year wedding anniversary! To celebrate, we went to the Chart House and actually spent the night up there. It was so nice. We even went to the movies, which I get to do maybe twice a year. I also had my first day at Penn State. I'm developing an online course over the summer, and Wednesday was my introduction. I was happy to find out that it only took an hour to get there, and that there is a Starbucks, 2 Dunkin Donuts, 2 sushi restaurants, and a Target in the five minutes between the PA turnpike and the school. All of my vices in a neat little row.

Also, Oliver got new braces. I'll have to post a picture of the size difference between his first pair and this new pair. They seem so big! The chunky little monkey is growing up...

Where does all the time go?

2008-05-22T13:09:00.003-05:00

Since she continued to cough through the night and into the morning, I took Mac to the doctor today. Of course, by the time we go there she was barely coughing and I felt like a complete idiot. This was our third day in a row at the pediatrician. When I sat back and thought about it, I came up with the following calculations:

In the last month, we have had:

1 overnight hospital stay for an EEG (this does not count the two out-patient EEGs that took place a little over a month ago)

1 Spina bifida clinic day (this includes seeing a pediatrician, nurse practitioner, physical therapist, orthopedist, neurosurgeon, and brace fitting)

at least 7 trips to the pediatrician (3 for Mac, 4 for Oliver)

4-5 days of physical therapy

1 day of developmental intervention

If you average that out for a 30 day a month, that works out to some sort of medical appointment almost every other day.

No wonder my house is such a mess.

What the heck, I'm up...

2008-05-22T01:08:00.002-05:00

So it's 2 a.m. - waay past my normal bedtime. What am I doing awake? For one, I'm battling writers block. I'm working on the latest round of corrections for my dissertation. This is an important revision, as this draft will go to my committee for approval before I can move on to the next step. Three of the members have not seen a draft since December, and if they don't like the direction I'm going in, it could be back to the drawing board. I was chugging along on corrections when I hit a dead end. This dead end, coupled with a severe shortage of free time to work on the dissertation, led to a stand-still in writing and a load of anxiety. I decided that I would stay up as late as possible tonight and just work, no matter what actually came out. That strategy has actually proven useful so far. But in the meantime...

Oliver went for his nine month check-up yesterday (I know -- he's so old now!) and we found out that he also has bronchial-itis. Back on the nebulizer for him. The doctor was nice enough to inform me that croup is also going around. Great. Mac and Oliver both wake up coughing today - not croup, just coughing. But low and behold, as soon as I get Mac to bed tonight, I hear the tell-tale seal barking of croup. Before it could turn into full-blown croup, I put her in the bathroom with steam. Still coughing. I get her ready to go out onto the porch into the cool night air. Still coughing. Who wakes up but Oliver, and his cry is sounding a little bark-y. So I bundle them both up, stick them in the car, and drive around with the windows down. The coughing slows down, but it's still intermittent and bark-y. Back into bed with warm juice for both of them (and all I can think about is the sugar on their teeth all night -- ugh!). Oliver has stopped coughing and she is coughing only occasionally. Of course, this is the one night that Tim is not home -- he is at the midnight showing of Indiana Jones (lucky!). But the good thing about croup is that it is supposed to be gone by the morning.

Other than his cold, Oliver got a good review at his check-up. He also went to CHOP last week for Spina Bifida clinic, and he got a good review there, too. Neurosurgery even offered to let him go six months (instead of three) between visits. That made me too nervous, so I'll still take him back in three months when we go back for clinic. The pediatrician at CHOP did mention that Oliver is a bit on the large side, and suggested we watch his intake so that he doesn't get too heavy. I get her point, since he doesn't burn calories as quickly as other babies, since he is less mobile. But really, you can't put a baby on a diet! But in case I didn't get the point, the orthopedist actually called Oliver's legs obese! Excuse me?? I left CHOP in a total huff, but have since calmed down. My home pediatrician said that his weight is fine, and that his eating schedule is a healthy one. But it is a thought that I will hold onto -- I guess his diet does have to accommodate the fact that he won't be moving around as much as one who is "fully mobile."

I guess I should get back to my dissertation and at least finish the section I'm working on. Since I'm up...

Mystery Solved

2008-05-06T20:45:00.003-05:00

When I was changing Oliver yesterday, I noticed a bruise on his leg, right above his knee. It was rather large and round. It looked pretty much like a bite mark. But no...how could that happen? Who would bite Oliver? I have to admit that my first thought went to Mackensie, not the dog. But I keep a very close eye on them when they are together. Certainly I would notice her chomping down on his leg, certainly I would have heard him cry after something like that. Did the dog do it? Doubtful. The skin wasn't punctured, and the imprints looked flat, not sharp.

I began my investigation by asking Mac directly if she bit Oliver. The answer was no. Later in the day, I brought Nanny in on the investigation. When she asked Mac if she bit Oliver, Mac told her no, that I had done it. Since I knew that I hadn't bitten Oliver, I knew that Mac was being less than truthful. But I still had some doubts. Usually, if she does something wrong, Mac tells on herself. She was denying, and I was halfway buying.

Later that night, when I was helping her to get dressed, Mac leaned in and gave me what started out as a hug. But before I knew it, I felt little teeth digging into my shoulder! Mac was, in fact, the culprit. My little princess has been having some aggression issues lately, but this is the worst of them. Oddly enough, she wasn't angry or anything when she did it. She just leaned in and took a bite. So, of course, we reprimanded her and added biting to the list of things she shouldn't do.

Hopefully, we "nipped" this in the bud.

Mac's Big Weekend

2008-05-01T22:28:00.002-05:00

First (and most importantly) we are pacifier free. We have ditched the "ninny." I was dreading this so much. Although I have wanted her to give it up forever, Mac was so attached to her pacifiers. She used them as an emotional crutch -- if she was upset, she would ask for one even if she already had one in her mouth. And she has screamed so much in the car when we've forgotten one at home that we actually have turned around to get one. But she is not allowed to have them in school, and has gone all day without one there, so I decided that it was time to get rid of it. I have tried many approaches in the past (offering a doll or stuffed animal, telling her that she was too old for one) but none worked. However, I just hadn't hit upon the right word. Mac loves to race and has to win, so I told her she could trade her ninny for a prize. Bing! That was it. She thought about it for two days, and then agreed. So we took her to the mall, let her pick out any princess prize she wanted, and paid for the prize with her pacifiers. That way, when she asked for them later, we could remind her that she saw us hand them in. The first night she was a little sad, and actually slept with her prize. After that, she hardly brought them up. First potty training, now this...my little girl is growing up!

On Sunday, we went out for dinner and Mac did a face plant into the ash tray outside. She was running around pretending to be a bull and tripped over Tim's feet. Her eye immediately started to swell, and before long, she had a black eye. Looking at it makes me sick, but she doesn't seem to mind. Now she looks as tough as she is...

Finally, I'm celebrating a different type of Mac. I traded in my partially defunct PC for a Mac Book After losing my dissertation, I decided to move up the timeline for getting a new computer. So after some research, Tim and I decided to go the Mac route. My standards are pretty low -- as long as I don't lose any important documents, I'm happy.

With Honors

2008-04-25T21:57:00.002-05:00

Does anyone remember that movie? It came out in 1994 and had Brendan Fraser and Moira Kelly (also of Cutting Edge fame). Brendan Fraser played a Harvard student who lost his dissertation when his computer crashed. He only had one copy, which he dropped down a grate in his haste to make a photocopy. Even though the movie wasn't that great, the thought of losing a dissertation has always stuck with me. Now I know how he feels. Okay, I'm not as bad off as he was -- I e-mailed myself a copy on Sunday. But everything I did between Sunday and today -- gone. I'm currently searching my hard drive for temporary files, but so far, no luck. This sucks sucks sucks. I'm not sure if the problem is my computer or my USB drive, but now I'm afraid to even try and work on my computer. And of course I owe my advisor a draft by the end of the weekend. One good thing about my procrastination this week...I didn't get as much done as I normally would have. Less done, less lost.

Home Again!

2008-04-22T21:13:00.002-05:00

That's right -- we're home! Oliver was discharged earlier today. The doctor's assistant said that none of the episodes that I noted were seizures. I still think that they look abnormal -- more than average "baby stuff" -- but I'm guessing if it was anything alarming, it would have shown up on the EEG. I'm still a little nervous that maybe we didn't capture the right thing, but I think that overall he did everything at the hospital that I've seen him do at home. I just have to hope and pray that this is right -- I have faith God is steering us in the right direction.

So, that's it. I was on my way home from teaching when Tim called me to let me know that they were being discharged. So I got some wine and headed home. We all played outside a little bit, I got to put Mac to bed, and now we're relaxing and watching some Magnum PI. Seriously, this is the life. Poor Oliver has blisters from where the electrodes were on his head, but he seems happy anyway. Really, there is no place like home.

Update

2008-04-22T11:19:00.003-05:00

We're still here, hanging out in the hospital. We made it through the first night. A little bedtime, Oliver did some of his twitching. I was actually relieved, since that means it will be on tape. I don't know if I mentioned it before, but every time I see him have an "episode" I'm supposed to press a button that marks it on the tape. And then I also write down what I saw so that they know what to look for. As I do this, I check the time on the EEG machine and note it, also. Each time I check the screen to see what the EEG output looks like, as if I can note normal v. abnormal brain patterns. Even though I have no idea what it means, it does create a nice little mini-obsession/distraction for me. And apparently, the doctor can check the feed and/or video right in his office. He is supposed to contact us later to let us know what he has seen so far. Hopefully, we will get good news and an early release. We'll see.

Mac came to visit last night. We had a good visit until it was time to go. She wanted daddy to stay with Oliver and me to go home with her. She cried when she was leaving. I felt so bad. So far, we have been able to marginalize Oliver's illness for her, since most of his doctor appointments have been on a Wednesdays, when she is at school. I usually don't even tell her that is where we are going, in case I am late picking her up. I usually just tell her I am at work. Let her resent that, instead. And even though we have PT, she gets to help out when she is home. But sometimes, like now, we have to tell her what is going on. I just hope that this isn't the beginning of resentment, abandonment issues, or jealousy. I am acutely aware of the fact that Oliver's condition can adversely affect her, and am not entirely sure how to deal with it.

And of course, there are the old-fashioned sibling issues of sharing and kindness to deal with. Here is Mackensie "sharing" her new dolls with Oliver last night. In my rush to get everything together, I forgot to bring many toys for Oliver. So when Mac came with dolls, we tried to get her to share. She did for a while, but she never let him forget whose dolls they really were (in keeping with her belief that everything really belongs to Mackensie).

And I'd like to give special thanks to Da_Bitchez, who continue to support my sporadic internet access during this hospital stay.

So here we are...

2008-04-21T16:13:00.002-05:00

at the hospital. We decided to go ahead with the 3-day EEG. The doctor never really gave us a choice, but we had debated whether or not it was worth it. Oliver had a few episodes last weekend, but a basically twitch-free week. A few here and there, but nothing over the top. So yesterday I decided to do a little internet research, which I had purposely stayed away from because I didn't want to freak myself out. But then I also thought that if I was committing to a three day stay in the hospital, I should know what it is for. And the research did scare me, but mostly because it doesn't sound that much different from what he is doing. And that brings us to today. It was supposed to start at one o'clock, but we really just got things underway around 4:30. We have our own private room, which is nice. I'll stay with Oliver and Tim will take care of Mac on the home front. Of course, they will come visit. And he'll spell me so that I can go teach tomorrow. But basically, Oli and I are going to have some quality time for the next few days.

To prepare him for the EEG, they had to use the most foul smelling glue to keep the electrodes on his head. He cried, but not too bad. Towards the end, he "fell asleep." I personally think that he passed out from the fumes, but the tech insisted that all babies fall asleep from fighting and crying. Mmm, I'm not so sure. I was ready to pass out, and he is a lot smaller than I am.

I'm trying to use this time productively to get my dissertation done, but I only have sporadic internet access. The hospital doesn't have wireless, so I'm pirating internet from Da_Bitchez. I can only guess that is the wireless network of one of the local college students.

I also bought a novel to read (another James Patterson -- it was all they really had at the food store this morning) and I brought Enchanted to watch. So Mr. Man and I will snuggle up for the night and relax.

Spring Fever!

2008-04-18T09:50:00.002-05:00

It's bad when even the instructor gets spring fever...but I get it every year. I hate the winter and LOVE the spring. I love the summer even more. And we are finally having a few consecutive days of really amazing weather. I don't want to do anything excpet hang around with the windows open, eat at an outside table, or just run mindless errands. It doesn't help that both of the classes I teach are annoying me -- one is really smart and good at following directions, but not so great at participation. The other class has a pretty good cohesive and conversational feel, but they can't follow directions or complete assignments to save their lives (or their grades). I'm supposed to be doing my lesson plans for next week now (doing all of them on Friday is my way to clear up the rest of the week for dissertation work), but I can't stop looking out the window and willing a distraction to come my way. Of course, one of my two favorite distractions is at school right now, and the other is asleep. I know I'll be sorry later if I don't get my work done now.

Spring is also becoming a time for trips to the hospital. It's just about a year ago today that we visited CHOP for the first time for prenatal testing. What a difference a year makes. Now, we are waiting for our insurance to clear a 3-day hospital stay for a video EEG for Oliver. Even though they haven't found anything wrong, the neurologist still wants to rule things out. I don't actually think that it is necessary, but what if it is? Ugh. When I asked if I could send the office video of Oliver doing his jerking, they said not to bother, and to just bring it for the procedure. Pretty frustrating. And I haven't been able to get in touch with the office to a)ask if the EEG is on for Monday, and b) talk to somebody else about sending the video clips. Even though they don't capture everything, I'd like to doctor to at least see them before committing to three days in the hospital.

I think I hear said distraction stirring. Saved from doing more work!

Another Day, Another EEG

2008-04-13T21:08:00.002-05:00

On Thursday, Tim took Oliver for his neurology appointment to follow up on the EEG. Although we knew that the results were normal, we still had an appointment to discuss what the twitching could be. I called CHOP and spoke to spina bifida clinic and neurosurgery to let them know what was going on, and to see if it sounded at all spina bifida related. They said that it didn't, but to make sure that the neurologist ruled out infantile spasms. I'm not sure if the neurologist thought they were a possibility, or if he was just unaccustomed to patients coming in with knowledge of possible conditions, but he ordered another EEG for Friday in order to rule them out. Thank God, that one also came back normal. He called me at 8:30 onh Friday night (talk about scary) in order to give me the results, and tell me that he wants to do a video EEG. He had mentioned this to Tim, as well. So I'm going along with this, until I realize that it is a 3 day procedure for which Oliver would have to be in the hospital. Um, what? Three days in the hospital? I'm torn -- while I want to be absolutely sure that there is nothing going on, this seems to be overkill. Are we looking to find something, or just rule something out? Either way, I would rather err on the side of caution. But where do I draw the line?

So the doctor is getting the ball rolling with pre-certification with my insurance company. In the meantime, I'm trying to catch the twitching on video so that I can show him. I caught a few instances that I'll try to e-mail to him. I'm hoping that he can diagnose from the videos.

So, here we go. Hopefully everything will be okay.

And in the middle of everything, Oliver got two teeth!

Another Busy Weekend

2008-04-05T22:37:00.005-05:00

So far, the weekend has brought good things. Most importantly, we got good results on Oliver's EEG. Everything looks normal, thank God. We go on Thursday to see the neurologist to discuss the report in more depth and talk about possible reasons for the movements. Luckily, hHe has hardly even done it over the past few days. We're thinking maybe it had something to do with his medication, either the antibiotic (unlikely) or the medicine he uses in the nebulizer (more likely). He stopped both treatments on Wednesday, and we haven't seen him twitching much since.

Mac and I had a big baking day today. Aunt Beth bought us the Deceptively Delicious cookbook, which has recipes for using vegetable purees in a variety of ways. Although Mac is great about eating veggies, the book has a lot of simple and kid-friendly recipes. So we had sweet potato pancakes for breakfast (not from scratch) and made oatmeal raisin cookies (from scratch). Although I've been cooking a LOT more since having kids (even 1 meal a week would constitute more cooking that before I had kids), I haven't totally mastered how to cook well. Sometimes things turn out well, but I'm never that surprised if it doesn't taste that good. So the pancakes were a pleasant surprise, and the cookies were, well, edible. Not bad, but definitely missing something. But Mac and I had a good time baking, and Oliver had a good time watching.

We also had part of Oliver's 6 month PT evaluation today. We had to evaluate how far he has come and set new goals. He was so little when they first came out to evaluate him, so the progress he has made is amazing. The difference between a 2 month old and a 7 month old is quite large. However, there are still some areas that we need to work on. Rolling over, sitting up for a long period of time unaided, and reaching over his head are milestones that we had hoped to reach. We're getting there. And moving forward, we just want MOBILITY! Our PT, Ruth, is great, and is already thinking of ways that we can get there. If his service coordinator approves it, we'll move up to PT 2 times a week. Plus, we just have to fit in more practice. Lately, I've been overwhelmed by the amount of work that Oliver really could use. He's doing really well, but I want to get him to the next level. It's great to be surrounded by people who don't put limitations on what he will be able to do. I just want to make sure that he reaches his full potential.

Add to all of this visits with 2 sets of grandparents, and you have yourself a busy weekend. But we've had fun and lots of family time, which is always nice. We have a busy week coming up. As always, I have teaching and dissertation work to do. Tim's tournament is next Saturday, so we will have a lot of prep for that, and a very busy Saturday. I'm tired just thinking about it.

Candidate for a Nervous Breakdown

2008-04-03T20:59:00.002-05:00

Some days are more difficult than others...

Actually, it backs up farther than just today. On Saturday, we noticed that Oliver was kind of jerking, or twitching, a little bit. It's been happening every day since -- some days more than others. Sometimes it is just slight, other times it happens for a few seconds. He looks okay while it is happening (other than the fact that he is twitching), but it is still unnerving. So I mentioned it when he went for his recheck at the pediatrician yesterday. Although they couldn't say what is was one way or the other, they did order an EEG to be on the safe side. We opted to stay local, since CHOP neurology (as opposed to Neurosurgery, which is where is already goes) has a ridiculously long wait time to get in. We were able to get an appointment for the EEG today. Luckily, it fell right in between my 2 classes. The EEG went smoothly. They said if there was anything alarming, they would call today. Otherwise, the neurologist is supposed to call tomorrow with an appointment for next week. Luckily, I got no calls today. But I'm still anxious to see if anything showed up. And if it didn't, what is causing the movement?

So after the EEG, I had to go give my Kean students their exam. As they haven't been performing so well, the exam was a stress point for both them and me.

Got home, picked up Mac, who did not want to leave Nanny's. For someone with such frenetic energy, Mac moves like molasses. Seriously, if you are in a rush (which I always am) you do not want to have to wait for Mac. I finally motivate her out of Nanny's house, get home, and start to cook dinner. I was making smothered Salmon, which basically consists of salmon covered in tomatoes, onions, a small amount of jalapeno pepper, and garlic. While I'm cooking, Oliver starts to cry. I figure he's hungry, but that he can wait until I am done cooking. Dinner is ready -- I set Mac up with her plate and start to feed Oliver. He cries every time I take the spoon out of his mouth to put more food on it. All of a sudden, out of nowhere, Mac starts bawling. Not her whiny cry, but a serious cry. She says her mouth hurts. My first thought is fish bone. Even though I understand the Heimlich in theory, I'm not sure how it would play out if I had to try it. I pray that I never have to find out. And I realize that if she was crying, she wasn't choking, but I was still scared. But then she said it was her cheek. So I took a look inside. I couldn't tell for sure, but I thought I saw some raised skin, like when you bite the inside of your cheek. And that makes me think coxsackie, a disgusting sounding virus that some kids at Mac's school had a few weeks ago. She just got off of antibiotics for a sinus infection, but you never know. She just kept crying, so I finally called my mom. Not that she could do anything, since she was on her way to DC, but I had to ask someone something.

When I explained what we were eating, my mom pointed out that it could have been the peppers in the food. Duh. Who feeds a 3 year old a dish with jalapeno pepper in it? Seriously, what a dumb idea. So I'm still not sure what it was. Mac was still complaining (but not crying) when I put her to bed. Not sure that I could rule out anything, I've been checking on her to make sure she is okay while she sleeps. She seems okay. There is no better sound in the world than the sound of your child breathing peacefully.

I'm not complaining, I'm just venting. It's not that I'm stressed out by my kids (this time). It's the opposite; I've found that being a mom makes you so emotionally vulnerable. The idea of anything bad happening to them is absolutely heart-stopping. And I don't mean to make Oliver's EEG all about me -- that is obviously about far more than how it affects my stress level. I just want what is best for him -- for both of them. When we were having the EEG today, the tech had never heard of spina bifida. When we explained it, she said "But he will get feeling in his legs eventually, right?" It was kind of hard to answer no. Sometimes I realize what a tough road he may have. When we went food shopping the other day, he couldn't sit in the cart as well as I thought he should. He kept leaning backwards. Why? Does he need more physical therapy? Occupational therapy? Do I just need to exercise him more? So many questions. And even though we've been blessed so far with good health for Mac, I never want to take her health for granted. So I check on them at night, pray for them, and hope that they turn out okay.

And, of course, ever since I heard that stress makes you retain belly fat, I stress about that a few times a day. Kind of counterproductive, but what else is new?

PT Updates

2008-03-30T21:03:00.007-05:00

In our house, PT means two things: potty training and physical therapy. Mac has been potty trained for a month or two now, and it is glorious. And even though it took her a long time to buy into it, once she started, she hardly had any accidents. Even at night. Although she hasn't used it much recently, she has a Dora potty seat that she puts on the regular seat so that she doesn't fall in. Does that make sense? Here's a picture:

She has one at home, at Nanny's, and at Grandma's. One day when I was picking her up from Nanny's, she came out of the bathroom with the Dora seat on her head. I kid you not -- I don't know why she put it on there, but once it was on, it wouldn't come off. Liar, you say? I have proof:

I had to try really hard not to laugh, because she was so upset. It obviously hurt whenever we tried to pull it off. In my defense, I didn't take the pictures right away, but it was too good to pass up. Finally, Pop Pop had to cut it off. She recovered pretty quickly and even used the seat again for a while. So far, it hasn't gone back on her head. I wouldn't put past her to try again, though...

And the other PT -- physical therapy -- it going pretty well. Oliver still hasn't rolled over, which apparently is the gateway to mobility. So that is what we gear all of our time towards now. He's close, but still not getting it. I guess that all of his movement issues are related to the spina bifida, but it's kind of weird how it affects things other than just his legs. He still has a tough time sitting up on his own, and he kind of leans to one side more than the other. So we continue to stretch, roll, and play on the belly. Yesterday, I talked with the PT about what to do when Oliver hits the age where he should be crawling or walking. She gave me a really good idea: to go get one of those little flat scooters (like we used to use in gym class) to lay on/push. The idea of him wheeling away, out of control scares, me. Clearly, I mastered neither the little scooter, nor the bike, when I was younger. She said I could also get a little toy truck or even a package of diapers that he can lean on to scoot across the floor. She also told me that I might be holding him too much, and I should just let him hang out on the floor more. So we have all sorts of exciting things to try.

Our PT also recommended that Oliver see a physiatrist. A physiatrist "Specializes in clinical and diagnostic use of physical agents and exercises to provide physiotherapy for physical, mental, and occupational rehabilitation of patients: Examines patient, utilizing electrodiagnosis and other diagnostic procedures to determine need for and extent of therapy." Um, I just found this definition online-- there will be no electrodiagnosis. But anyway, this doctor would be able to prescribe special equipment and other therapy. Not that I'm looking forward to adding another doctor to our repertoire, but I do like the idea of getting Oliver all the help we can. And this doctor would be in New Jersey, which is always a bonus. Kind of like the Little Gym, but more intense.

A Successful Surgery

2008-03-19T16:55:00.010-05:00

The title says it all. Thank God, everything went well. The day before surgery, we had to call to get a time: 6:15 a.m. Um, what? But they couldn't switch it, so down we went. Everything went very smoothly.

Hanging out in the waiting room.

6:15 -- we were actually on time! That might be the first time ever.

6:30 -- Taken into the perioperative room. This is the room for both pre-operative interviews and recovery. The room has a rocking chair for me, a chair for Tim, and stretcher/bed for Oliver, a "parent phone" for outgoing calls, supplies and a desk for the medical staff, and a tv. Since this is our third surgery, it's getting to be sort of familiar. Before the surgery, the nurse takes down general information about Oliver, verifies what is in his records, goes over allergies, etc. Then the doctor comes in to talk about the procedure and answer any questions. Finally, we meet with anesthesiology. Meanwhile, Oliver gets dressed in cute little hospital jammies. I'm always tempted to steal them, but I know I would never put them on him at home. Everyone commented on how big he is -- poor guy is going to get a complex.

7:30 -- They took Oliver into surgery. No matter how calm I am leading up to it, I always get choked up. Yesterday was no exception. I hate the idea of him going under anesthesia. Once he went to surgery, we went to the surgical waiting room. There is a woman with whom you check in, and she gives you all the information that goes along with waiting. I've identified a few jobs that I would want to do if I wasn't on my current career path, and for some reason, this is one of them. You can track Oliver's progress (in surgery or recovery) on a large board. There are computers, tables, vending machines, free coffee, and free graham crackers. I set up shop and got started on my dissertation. Tim read his book. It took quite a while for Oliver to get on the board -- I was just starting to get worried when I saw his initials and patient number pop up. A nurse came out twice to give us an update.

9:30 -- Oliver was in recovery. Always a relief. The doctor came out and told us that everything went well. They found his left testicle (yay), brought it down and "tacked" it so it stays in place, and also went into the right side and tacked that one down, too. The little guy is all set. Oliver was a little hungry and a little cranky. He spent much of the next hour sleeping and occasionally eating.

11:30 -- We were able to be discharged. After we went down to the cafeteria to get lunch, we hit the road to go home. Oliver spent the rest of the day sleeping and eating, but mostly sleeping. He doesn't seem to be in much pain. He has four incisions altogether, two of them in a very delicate place. But by today, he was all recovered from the surgery.

All tired out and ready to go home.

O Sleep, Where Art Thou?

2008-03-17T08:42:00.006-05:00

Proof that they can sleep, when the choose to.

Sleep has left the building. Seriously. A combination of the time change plus our group illness has left the house essentially sleepless for over a week now. While I appreciate the extra hours of light, I'll come right out and say it: damn daylight savings time. For the first few nights, Mac would not go to sleep with any less than 5 times of "coming out" -- sneaking out of bed with a little smile on her face to go potty, tell me that "the other night I said she could just lay on my lap and watch TV" (I never said that), or just plain run around until I can catch her and put her into bed. And then when I put her in, she yells "Mama, come!" She doesn't even call me "Mama" -- this is her attempt at baby talk, probably because while she is doing all of this I often have Oliver on my lap trying to get him to sleep. In keeping with the old adage "Never go to sleep angry," I hate having to reprimand her before sleep. I want her last thoughts before sleep to be happy thoughts about how much mommy loves her. However, after about 2 times of her coming out, I have completely lost my cool. Then I overcompensate by getting angry, getting her into bed, and then giving her a ton of kisses once she is in there. So maybe I'm sending some mixed messages.

This doesn't happen every night. But more often than not, on the nights that this doesn't happen, she has been waking up in the middle of the night. We have gone through this before and it sucks. I really don't even know what to do. When she wakes up in the middle of the night, it starts with her little feet padding down the hall. Usually a cute sound, it now generates a curse from me, followed by me hitting Tim's arm and telling him to get ready. My equivalent of yelling "incoming!" And this is what happened last night. It may have been our worst ever. She came in around 2:30. Tim had just gotten in bed, so he took the first attempt at getting her back to sleep. So Mac says, "Doggy really wanted to sleep in your bed." I told her that doggy (her stuffed dog, who she was holding) could come back in the morning, but had to sleep in her bed. So she said, "Okay doggy, did you hear that? Maybe another time, okay?" Very cute. So Tim took her and put her in bed. She asked if I could come lay. Okay. So I go lay for quite a while. Every time I went to get up, she looked like she was almost asleep, so I would stay. When it was clear she wasn't going to sleep, I told her I was going to bed. She started to wind up the tantrum. I told her to wait for me in bed 10 minutes and I would come back. If she was still awake, she could come in bed with me. But if she tried to follow me down the hall, she would have to go back in bed with the door closed.

Here's where I made my mistake -- she made it the whole ten minutes, so I went to check on her. I felt I owed it to her to be honest. Dumb. She was falling asleep when I went in. But when she saw me, I had to bring her into my bed.

Of course, all of this time, Oliver is asleep in our bed because I can't figure out how to get him to sleep in his own bed without crying and waking up Mac (like that makes a difference these days. But I do live in fear of him waking her up if I let him cry it out in his crib, for obvious reasons. I reason that after his surgery tomorrow, I'm going to let him sleep with us no matter what. So I'm waiting to train him to sleep in his own bed until after the surgery. Hah.). So we all squeeze into my bed and Mac proceeds to kick, roll, sit, and basically not sleep. So we put her back in bed. Back out she comes. Back in bed. Back out she comes. We close our door so she can't get in. She cries. We put her back in her bed. Finally, around 4:45, she falls asleep. Not because of anything we did, but I suspect because she hit her 2 1/2 hour mark and just fell back to sleep.

Exhausting, and I don't know what to do. I've tried different "sleep methods" and they really rely on a child who listens. And when it comes down to it, the only thing left is to let them cry it out. Which I hate. I've done it with Mac before, and it works, but I hate it. And now that she's not in a crib, it's a whole different game. Plus, with two, if one is sleeping, I don't want anyone crying to wake up the other. But I can't really blame the kids, because neither is a good sleeper. My parents might insinuate that it is karma, because I didn't nap and was also a night-waker. But at this point, we are all so utterly sleep deprived that I don't know how to get us back on track.

At least we all seem to be on the mend. Oliver should be clear for surgery tomorrow. Mac is having a sleepover with Nanny tonight in case we have an early surgery time. Sorry, Nanny -- let me offer my apologies up front.

Another Sick Day

2008-03-12T14:04:00.002-05:00

So we're having another sick day. But this one is on the heels of what might be my scariest experience yet as a mother: an episode of croup. Mac has been stuffy/runny for a few days, but overall fine. Last night she woke up around midnight and could hardly catch her breath. She was coughing like a "seal bark" and having trouble breathing. At first she couldn't catch her breath, and then it turned into a "Darth Vadar" sounding breathing pattern. Her little chest was caving in at the ribs with each breath. We threw her in the bathroom and put the shower on full steam. Then I called the doctor. I had to leave a message with the hospital answering service, and when they called back, they very slowly took my name, address, etc., so that they could bill me the $5 required for after-hours service. It took all of my control to stay calm. By the time she actually got to talking about what was wrong with Mac, Mac had pretty much stopped coughing.

Luckily (sort of), Tim had experience with croup because he had that and asthma often when he was younger. He was very calm, but I was ready to take her to the hospital. But after 30 minutes in the steamy bathroom and a trip outside in the cold, Mac finally sounded better. So I decided to sleep with her in case it started up again. Which didn't work, because Mac has a really hard time sleeping with someone in the bed. She is in denial about this, as she always wants to be in our bed or have us in her bed, but she really is more of a solo sleeper. So, at this point it is 2:30. She and I lay there for an hour, with her tossing and turning. No recurring coughs, so I tell her I'm going into my own bed.

Meanwhile, my bed has both Tim and Oliver. And I desperately want to keep Mac and Oliver separate, since I can't even imagine how scary croup would be in a six month old. Plus, Oliver has to be clear for his surgery on Tuesday. About 3 minutes later, I hear little footsteps coming down the hallway. It was Mac, and she would not be turned away without a fight. Since I didn't want her getting worked up, out goes Oliver and in comes Mac. Luckily, within about 15 minutes or so, we were all asleep.

Fast forward to 7 am, when Oliver wakes up (plenty sniffly) to eat his breakfast. So I bring him into bed and keep him as far away from Mac as possible. When Mac wakes up at 8:30 (Oliver and I both fell asleep while he was eating) it is clear that she a) feels better and b) really needs a lot more sleep. So she instantly starts poking at Oliver and tapping (hitting) him on the head. It is so tiring to reprimand within 5 minutes of waking up, but something that I find myself doing more and more often.

So I call the doctor, who says Mac doesn't have to come in, but gives me instructions on how to keep Olivers sniffles from turning into croup. Out I go to CVS, where I buy a second cool-mist humidifier (I've been rotating the one we have to whoever is "sickest" each night), nose drops for each kid, and a nasal aspirator.

After 45 minutes of driving (to Starbucks, of course). they both finally fell asleep. I've never seen two kids who needed it more.

So that's our day. At least nobody is throwing up (yet).

...Like I Need a Hole in my Head

2008-03-08T14:33:00.002-05:00

Honestly -- we lose an hour today? I need at least five more hours in any given day, and I have to give one up today? That's an hour I could spend with my kids, working on my dissertation, or watching America's Next Top Model.

The only good thing is that it will stay dark a little later in the morning. Mac has been waking up at 6:30 instead of her usual 8 a.m., I'm guessing because it's been so light. Hopefully this will get her back to sleeping in just a bit.