Moving Forward

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!

 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

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

Lots of poop today.

We're back to the drawing board.

Dumb cone enema.

Another Experiment Ended and Update on an Ongoing Experiment

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.