Yesterday Riley went to his 3 month clinic check up with Dr. Swoboda. He is doing remarkably well for his age. They are so excited about his numbers on his neuron mapping test. They expect his numbers to be declining especially since he is over 2, but he actually increased from last time. YAY RILEY! She is setting him up to get an Echo of his heart and a halter monitor test as well. He's not showing signs of any heart problems but there have been recent reports of Type I kids who are relatively healthy suddenly die. Some of the research labs have been reporting similar results with some of their mouse models. Come to find out that the mice that are dying are showing signs of Cardiomyopathy, a weakening of heart muscles. Dr. Swoboda told us that she's actually never seen it, but since research is showing signs she wants to just make sure. The only thing she is concerned about is his weight. Her exact words were "This is an emergency to get his weight down!" At his visit in December he jumped from the 50% for weight up to the 90%. This visit he is now just above the 90%. He is quite long though he's in the 80%. At least his height is keeping up with his weight but she's nervous that he's going to get into trouble with his breathing from being so big. There are a few movements that have decreased in him which is most likely related to his size since his neuron function is still good. She will be going over his diet with the dietician and they will let us know what they want to do. All in all it was a good visit and I'm just so happy with Riley's progress. We look forward to his next visit in July.
We have been wanting to try to get Riley on Social Security ever since he was diagnosed. The cost of taking care of him is so outragious that we really needed some additional support. We have not been able to apply because our income is 'too high' to qualify so we didn't even bother filling out the paperwork because it's quite the project. With Marc currently not working I felt that it was time to try. Not that I want to abuse the system, but given our circumstances I felt that it was deserved. So I spent about 3 days filling out the paper work; finding addresses, phone numbers and exact dates of hospital admissions and diagnosis. I went through the phone interview and signed all the paperwork. The normal approval process usually takes 180 days but since Riley's condition is terminal they are able to pay benefits during the approval process, but they have to determine whether his diagnosis fits into one of the terminal catagories. What ever! It's been about a month and I haven't heard anything about our case when to my surprise a check arrives on Monday from the United States Treasury Department of Social Security. Excitedly I open the envelope when I was shocked to read the amount of $39! That's right folks with our income cut in half trying to provide for a family of three with a terminally ill child the government feels that $39 will be plenty to house, feed, clothe and provide medical care for Riley! Thanks a lot!