Kicking it Up a Notch

With the help of therapy, Wade is pretty much amazing for improving his skills in walking (even walking backwards) and squatting. He has also started to show more interest in half-tall kneeling and he has even went back in his development to master crawling and tummy time (the correct way)!


However, he is still low tone (especially in his stomach) and could be walking with better alignment. So, in order to correct these problems, the First Steps Program has ordered some therapy tools to assist him.


First, to correct his alignment, they ordered shoe inserts to help stabilize his feet and prevent him from walking on the insides of his feet. They hide inside his normal tennis shoes and we didn't have to buy any special shoes! Wade is a champ with the inserts because he has never complained or lost his balance with them.


In addition to the shoe inserts, Wade also has TheraTogs that he wears for 30 minutes a day. The TheraTogs are a stretchy outfit that is worn tight to the body so that it increases body awareness and helps improve Wade's tone and posture. Unfortunately, Wade doesn't like the TheraTogs as much as his shoe inserts. He is very whiny when wearing them so I usually try to let him play outside so he isn't focused on the unpleasantness of wearing the TheraTogs.

W unhappy about wearing his TheraTogs.

Adam's Donation Day

If you didn't know from reading this post, Adam was a match for a 61 year old who has leukemia! He was going through the process of taking Neupogen shots to prepare his blood for PBSC donation. Last Wednesday night, we all headed up to St. Louis for Adam to go through the PBSC process of donating his stem cells. We stayed in a hotel the night before because Adam had to be there by 6:30am to get started. The nurses gave him his Day 5 of Neupogen and drew some blood. Then they hooked Adam up to the apheresis machine so it could filter his blood to collect just the stem cells needed for the patient. Here is a picture of Adam just getting started on the machine.

He had to sit in that chair in that same position for 7 hours. He watched two movies and played games on his phone. Mommy and Wade hung out at the hotel and Union Station so we wouldn't be in the way at the hospital. When we returned to the hospital around 2:30pm, Adam was finishing up and they bandaged his arms where the needles were. Wade missed his daddy and had to check out what they did to him!

What did they do to you, Daddy?

I'm so proud of my Daddy!

Update on Recent Testing

Update on Liver Enzymes: 

Due to Wade's elevated liver enzymes, he had some blood work and urine tests collected to test for mitochondrial disease or any metabolic issues. (see this post). These tests all came back normal and the reason why his liver and pancreas looked the way it did in the ultrasound is because of SDS, not anything else. Thank God!

Update on Bone X-Ray:

The geneticist ordered a full-body bone x-ray since SDS patients typically have skeletal dysplasia (see this post). The results from the x-ray indicates what they would typically find with SDS patients. The geneticist did not find any additional concerns with Wade's bones. He just suggested continuing physical therapy to increase muscle tone.

Update on Parental Genetic Testing:

To confirm Wade's SDS genetic confirmation, they tested me and Adam (see this post).We're currently still awaiting these test results.
**4/26/2012 Update: The genetic test from me and Adam confirmed that each of us carry the SDS gene. Therefore, since we are both carriers, it is a 25% chance that other children we conceive would have SDS too.

Weekly CBC's:

As a way of figuring out the best dose for Wade's Neupogen, we do a CBC weekly--on Monday's. We originally had Wade on Neupogen MWF for about three weeks. Then his counts were too low on Monday, so we changed the dose so he would receive it M-F. After one week of M-F, they noticed that his ANC was still too low on Monday. So next they changed him to receive Neupogen daily (M-S). After one week of daily injections, his ANC count on Monday was 9,450! WOW! So, the Neupogen really does work but the hem/onc doctor said it doesn't need to be that high. So now we're back down to 5 days a week, but instead of skipping Saturday & Sunday, we're skipping Tuesdays and Fridays to keep his counts a little more balanced throughout the week.