Happy Holidays!

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

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

Very rarely is Mac rendered speechless...

In Case Ruling the World Doesn't Work Out

Mac can always be a director.

Baby Steps

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

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

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

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!)

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

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

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!

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

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

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!

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

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

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...

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

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?

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!!

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!

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

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'

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)

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

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.