The Marathon Month

Hello,

I have added some new pictures! Check out Jack's Photo Albums The pictures are hosted by Snapfish -- you need to sign up using your e-mail address. It's free, quick and painless, I promise! Please let me know if you have any questions.

Jack had a great PT session this morning. It's usually the big things that get us excited, but today I noticed some subtle changes in Jack. Today he was leaning forward and using his walker properly. It was the first time it truly sunk in. I could see it registering on his little face...he smiled and laughed (which is RARE during a tough PT session) and it finally seemed to click for him. I can't wait to practice some more tomorrow. Things are going to change -- I can FEEL it (yes, I just referenced a Beck song, LOL).

On Monday we saw Jack's developmental pediatrician/Rehab doctor. She is an amazing doctor. She sort of ties everything together for us locally and loads us up with all the prescriptions for therapy and equipment. She's a good resource to have and I sort of just throw everything at her that's happened in recent months. I am glad to have her as part of our team.

This month has been beyond hectic. I am so glad tomorrow is February! We've truly had appointments every day of the month. We've also showed our house THIRTEEN times...that's 13 times I had to load the poor dog into the back of the van...that's 13 times I had to clean the house to a spotless condition, that's 13 times I had to drag Jack and the dog out of the house for 2 hours at a time. I am SO READY FOR THIS TO BE OVER!!!! Ahh, feels a bit better now that I've unloaded all of that. I cannot wait!

We're also trying to get the transition from Early Intervention (Jack's current therapies) to preschool and hospital therapy. Any which way we look at it we are going to be one busy family. Jack will most likely go to school in the mornings several days a week. Since he is getting botox he will need intensified therapy to maximize the benefits. So that means traveling to Middletown 4 or 5 times a week...on top of our usual doctor/specialist visits, trips to CHOP and school. I know we can do it. I know we have to do it! Luckily the intense therapy won't last forever and I know this is going to help Jack. Just somebody check in on us every now and then to make sure we know what day it is! LOL, just kidding!

Well, it's rather late for me to be on the internet and I still have toys to put away! I hope everyone is doing well. Thanks for reading.

Botox Evaluation at CHOP

We had our big appointment yesterday at CHOP. Jason took the day off to go with us -- I am so glad he has the opportunity to do this when these major appointments come up. We left the house around 8:00 am and made pretty good time to Philly (even stopping for Starbucks 1/2 way there). I love the hospital campus, it's nice (well we've only seen one part of it called the Seashore House)...the parking garage is located just steps away and the building is pretty easy to navigate.

We saw Dr. Drake a doctor of Physical Medicine for the Botox evaluation. He was so, so nice and Jack liked him too! He looked at Jack's muscles and examined his range of motion and even had Jack walk with a walker in his bare feet. He thinks Jack is a perfect candidate for Botox and feels he will do quite well with the injections. Jack will get 10 different areas injected. 3 places on each leg and 4 areas on his right arm. He will be sedated for the procedure and we will most likely end up spending several hours at the hospital until it's all done. The actual injections take only minutes to do, but they have to be very precise and actually use electrodes to be sure they are in the right muscle. It sounds very thorough.

I am so excited -- I have read so many good experiences about Botox and how well it works for kids with CP. The doctor thinks Jack will really be able to "take off" walking at first with his walker and then independently!!!!!!

Sometimes when I am rocking Jack to sleep I imagine the day he takes his first steps. I've even had dreams of Jack walking and when I wake up I am left happy and somewhat sad at the same time. It feels so good to know there's so much out there to help kids like Jack. With school, botox, and a new house waiting for us life certainly isn't boring over here!

Jack had a hard time going to sleep last night and when he started crying I went to rock him a little and noticed he felt a little warm. I thought it was just hot in his room and didn't think much of it. He still didn't settle and Jason went in to sit with him for a while and we noticed Jack's nose was running like a faucet! I took his temperature and it was 99.3 which isn't terrible but still above normal. We gave him a little medicine and he finally went to sleep. Today his nose continues to run and he's got a cough and a slight fever. He's acting a little under the weather too. I hope it passes quickly, I will update when I can.

School Daze...

First of all, sorry for my lack of updates lately! We've been showing the house nearly every other day and we've had many dr and therapy appointments this month as well! I can't believe it's almost the end of January...We are getting excited about moving. Let's all hope I can post a SOLD SIGN soon!!!

We saw Jack's neurologist earlier this month -- and got a good report. No medicine changes or anything this time. Short and sweet -- and I hope it stays that way! We go back in 4 months for blood work and another check up.

Jack also saw his eye doctor and we are now patching the right eye 6 hours a day...poor Jack, he hates it but he's tolerating it fairly well. We will go back in a month for another exam. We are still hoping to avoid surgery.

We had his evaluation for preschool this morning...he was such a good boy. We had to go to a new building and meet new people and Jack jumped right in and started showing them all he can do. There's actually one final meeting set for next month that will determine how long he'll go and for how many days a week. He'll be getting OT, PT, ST, and vision therapy as well as class time when he goes to school. There's even a yellow bus that can come pick him up and everything!!! I haven't agreed to that yet -- I figured I'd want to drop him off the first few times and then, perhaps, I'll consider the bus. Our baby Jack isn't a baby any more...time to start calling him big boy Jack!

He unfortunately had a bad tummy ache for a few days...Although when he was cranky I didn't know it was his stomach that hurt. It turns out he was severely constipated...it seems I need to find a new balance for the Miralax...either he gets too much or too little and both aren't good. I am probably going to try a half dose every day vs. a full dose every other day. Keep your fingers crossed for his little tummy.

Jack now weighs 26 pounds and is 35 inches tall! That's pretty good growing -- even though he's still on the small side for his age. His appetite has been great and he continues to eat and eat and eat! A new favorite is "big kid" cereal. He's enjoying corn pops and honey combs! LOL. He also had his first Oreo Cookie dipped in milk the other night. The look on his face was priceless. Almost as if he couldn't believe anything could taste quite that good! He was a chocolatey mess -- way too cute!

I also realized I haven't taken any new pictures since Christmas! I have to get on the ball here -- or there won't be any January 2006 photo album! That would be a first. So for now, here's one of the little family on Christmas Day.

Umpa...

We have some really terrible family news. Jason's grandpa Jim (we called him Umpa) passed away early yesterday morning. He was a wonderful guy -- handsome, smart, and comical! He loved to top off everyone's wine glass and watch us all have a good time. He adored Jack as well. Jack was actually named after his late wife Jackie who passed away right before Jack was born. Umpa came to the NICU every other day and sometimes got scolded by the nurses (didn't always ring in before hand...lol) but they learned to love him too. We miss him so much and are still in shock. Our thoughts are with Sarah and her family as well. Services are being held later this week.

In the past week we listed our house for sale and over the three day weekend worked like we've never worked before. Our house is SPOTLESS! Never has it looked this good! LOL -- we actually couldn't have picked a better time for all of the repairs and cleaning because we had our very first showing yesterday afternoon. I still don't know what they thought but I will find out hopefully today.

Jack has been hugely cranky the past week. I was near my wit's end!!!!!!! He would cry at everything he would want to be held and then cry because he wanted down...one toy would make him laugh the next would have him in tears...I think it may be partly due to both mommy and daddy being super busy the past few days and also I noticed finally, yes finally, the last of his two year molars are about half way through. I am not one to blame everything on teething, but now his crankiness makes a little more sense.

He has put two words together on several occasions....he pointed to a big ball and said "Ball, go" meaning he wanted me to throw the ball!!!!!!! He also said "Pup go" when the puppy was in his way!!!!! LOL. He still lacks what I would call a functional communication system which leads him (and mom) to become frustrated but I am SO PROUD, SO VERY PROUD of his accomplishments. His little voice is so cute and it's so nice to hear him use it.

Our holidays were very nice. I spent three days cooking and haven't cooked since (thank's Grandma Linda!) LOL we had our families over and had a wonderful day. Jack loved opening presents!!

This month we see a lot of doctors -- but top on my list is the CHOP CP Clinic -- where he'll finally be evaluated for botox!

I added some new pictures -- be sure to check them out!

I am probably leaving out a ton of stuff, but I am tired and will hopefully be able to post more.