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.

Down to One

Here is an update on Wade's ear tubes. Ten days after surgery of getting the tubes in, Wade had a 15-month well-baby visit with his pediatrician. After looking in his ears, she confirms that his left ear tube is sitting at an angle and working it's way out. I was so shocked to know that this happened within 10 DAYS!!?! 

Adam and I didn't get too excited about it since he hadn't had any ear infections since getting them in. We had our post-op appointment today with the ENT doctor in St. Louis. They performed a hearing test and luckily he did a lot better than before tubes. They asked me if I had noticed anything with the tubes and I explained to them what my pediatrician said. The Audiologist looked in his ear and confirmed that the tube was out of the eardrum and now just hanging out in the canal.

So, when we actually saw the ENT doctor, she looked in his ear and obviously saw the same thing everyone else has been seeing. So, she asked for a nurse to come in and help hold Wade down so they could extract it. The doctor was able to retrieve it in less than a minute. Of course Wade cried because he was being held down, but I wonder if it actually hurt inside his ear?

Now, we have to watch out for any ear infections in his left ear for the next 6 months before we see the ENT doctor again. If he starts getting ear infections--it's surgery time again. :(

But, the only good thing if he does need another tube in his left ear is that we've already reached our insurance's maximum out-of-pocket for 2012!