Mini-Greg & Nicky Update 7/8/2010

I promised an update on my boys and I will do one now since it's been a while since I've done one, although I don't have too much new info to share.

Let's see... let's start with Greg. Unfortunately I can't really say I see a lot of improvement. He tells me that he keeps up with excercising at work, especially his arm, and he's finally able to open and close his hand quite a bit more that he used to, but far and wide, since, say, May, I can't say what else I can see that has improved even slightly. It's depressing him and it's depressing me. Before his second stroke this past February he had made some major strides that are yet to come back, such as his ability to walk without his brace. He still needs his brace, day in and day out and won't go without it. He uses his cane often to lean on and one good thing is that he does not want to go back to the wheelchair no matter what. He does drive to work now daily, at first he had a ride almost daily, but he's gone solo now for about a month or so. That has made a big difference in his confidence. His numbers are fantastic, blood pressure, cholesterol, everything is in the normal range.

Nicky had a rough week or two after his throat dilatation in late June, but I can see we're turning the corner a bit. Before his dilatation he used to throw up daily due to his inability to swallow and his allergies... he's allergic to "something", we can't really test him for due to his skin, but we know it's environmental. Anytime we travel anywhere, wether it's Northern California, Arizona or even Italy, his nose is clear, but here it's a different story. We finally figured out a cocktail of medicine to give him at night (a nice one! All we need to throw in is alcohol, LOL) and his itching/nose is under control. His itching, by the way, is his WORSE enemy. Especially at night when he does not realize he's doing it, that's why the meds are so important at night. 90% of his wounds are caused by his itching, so to us is *vital* to overwrap to create that very important padding to prevent him from hurting himself. It works for us. It's funny-there are some doctors that are NOT happy with the overwrapping, they tell me his skin needs to 'breathe', but, okay, the skin is now breathing BUT it's full of wounds? NO THANKS! Nicky has LARGE chunks of his legs/arms, which are his roughest spots, wound-free for ages, thanks to the overwrapping. Interestingly enough one nurse at Stanford last month praised me for it. WOW, there's a first for everything. Oh no, wait... the EB expert guy in Italy once told me he wished all the parents wrapped like I did. Yes, 2 people believe in me. YES!! LOL ;-)

Moving Forward... for Greg, more of the same, we have more appointments for Loma Linda, but the super-duper Physical Therapy he NEEDS got denied by the insurance because they said it was NOT 'Medically Necessary'. RIGHT!!!! So now we'll have a talk with the local Physical Therapy because for them to give us a piece of paper and talk to us for 10 minutes of what we need to do is completely UNACCEPTABLE. He needs a full hour of someone working on him for goodness sakes!!!
For Nicky...   by the end of this month they will fit him for leg braces that are soft and fit over his bandages for him to sleep on to attempt to straighten his legs a bit or prevent further damage. His knees have had large wounds since he was 1 year old and have NEVER been wound-free, so he walks with a little bend at the knee joint.
We are still waiting to hear from Minnesota about Nicky being a candidate for the Bone Marrow Transplant. They have all the medical records that I could get my hands on so now everything is out of my hands. I am hopeful I should hear something before the end of next week. If Dr. Wagner decides Nicky can be a candidate we'll make arrangements for Nicky and I to fly out to Minneapolis for the evaluation, which will include tests, xrays and a full disclosure of what it will all entail. Provided all the tests come back OK I am hoping to be able to take Nicky to have the BMT sometime in the spring-early summer (we'll be gone about 4 months), provided Greg is more independent. I really worry about that! Somehow we'll muddle throught it.

I'll have another update, possibly at Caringbridge sometime in late July/early August for Nicky. The online school is planning an IEP to address any possible concerns, but I am already contemplating possibly quitting my job to fully concentrate on my school and be there for Nicky for his school when he needs me. So many things are up in the air right now, can't really plan too much ahead.

If you got to this point, thank you for reading and thank you for caring!!
{{HUGS}}

Silvia and Family :-)
P.S. BTW, Connor is doing great, he's my joy and perennial cuddler, he helps me and both Nicky and Greg all the time. He's 6 going on 32. Will start 2nd grade next month!