Monday, February 21, 2011

Family Update

I know I have not posted anything for a while. We are still here though. I just tried to make a post with lots of pictures, but apparently I have used up my 1 GB of memory space for pictures! Now I have to look into deleting old pictures or paying for some extra storage. For now I will post an update without pictures...

Ben- On Tuesday (last week) he cut his thumb while at work using his pocket knife to cut a zip tie. Definitely not the brightest idea ever and he will admit to that! He ended up spending time at an urgent care place. In the end he got 2 internal stitches and 6 external stitches. He will get the stitches taken out on Friday this week. I am trying to convince him he shouldn't play volleyball tonight, but as of now he is convinced it will be fine.

April- Not much to report about me. I have been busy with doctors and school stuff for the boys. I have been feeling exhausted and run down recently and would love to have some "me" time soon. I admit to having some jealousy of Ben getting to go to work each day and have adult interaction along with a break from the boys once and a while. I love staying home with them and wouldn't change that at all, but it would be nice to get away alone once and a while. I have been dealing with some pain in my right hand, wrist and arm which I think is Carpal Tunnel.

Zak- He is completely daytime potty trained which is awesome. He still wears a diaper overnight and tends to wake up drenched every morning, but that is fine. He did have some blood work done to check his antibody levels by the Immunologist since the CVID Ryder has is known to be a genetic thing. I got a call from the Nurse Practitioner saying they had his results and he shows no antibodies to the Prevnar vaccine either. We are going to the pediatrician on Wednesday to get him a booster shot for Prevnar as well as getting him the flu shot. Then we will do more blood work 4 weeks later and have an appointment with the Immunologist scheduled for April 29. I am hoping he will respond well to the booster and that his overall immune system is functioning better than Ryder's, so fingers crossed.

Ryder- Things have been busy with Ryder recently. We have now done 3 infusions at home and run into plenty of problems. The first infusion at home went great, although slow. The second infusion was a nightmare because half of the Hizentra leaked out and then I couldn't get the rest to infuse at all. This last infusion started out badly with a little bit leaking out, but I took the needle out and re-inserted it which led to the rest of the Hizentra to infuse quickly. I now know exactly how to insert the needle and tape it down so it doesn't leak and hopefully it will infuse as quickly as it is supposed to. On Friday we are pretty confident that Ryder had a seizure. After the episode ended I called the pediatrician who sent us to Radiology to have some x-rays done to make sure he didn't aspirate anything into his lungs (he threw up) which all came back normal. We don't think it was an allergic reaction because he snapped out of it fairly quickly with no medication. I talked with the Nurse Practitioner from Immunology this morning and she feels it definitely sounds like a seizure, but is confident it doesn't have to do with the Hizentra since it had been 6 days since his last infusion. She said there have been documented cases of seizures occurring, but always within 1-2 days of an infusion. I ten e-mailed the Geneticist to see if she feels we should see a Neurologist. Speaking of the Geneticist, I got a call from the genetic counselor last week. She wanted to schedule a follow-up visit for April 4 to discuss some new findings. Apparently, the lab who did blood work 2 years ago sent a new report stating there were new findings in his blood work. It shows that in addition to the extra 'x' chromosome he has a partial deletion on Chromosome 15. The genetic counselor explained in recent studies it has shown kid's with this deletion have significant developmental delays, but deletions on Chromosome 15 are also linked with several specific disorders as well. So we will go on April 4 to discuss it in-depth with Dr.Hamosh. Also, we have Ryder's IEP Meeting scheduled for March 1, as long as it doesn't snow once again since this meeting has already been cancelled twice due to snow closing the schools.