Tuesday, February 22, 2011

Hospital Update

I got an email today from my contact at Colorado Children's saying that she has been making tons of calls and emails to try to get things on their end sorted out as soon as possible. She said she should have more information later this week!

Saturday, February 19, 2011

Raul's Parents

Raul's parents have come a long way over the last couple months. His mom has always agreed with having him come here for medical care, as she knows it is what is best for him. His father on the other hand initially objected and accused his wife of selling Raul (he is alcoholic). Of course this is not the case, and the family is not getting any money for doing this. Luckily, his dad came around, and now both parents are on board. I know it must be hard for them to understand that care, and a trial treatment, IS available for their son after everything they were told when he was born. And, of course, they lost his twin sister to EB at one month of age. But Raul has gotten stronger, and doctors here believe he does not have the lethal form of EB. The type they suspect, RDEB, is not the best type to have, but he should not have to die at the young age initially predicted for him. Raul's parents have put a lot of trust into us, foreigners they have barely met, and are trusting us to take care of their son, knowing it is his best option.

To thank them for what they are doing for Raul, I put together a Snapfish photo album with all my cutest pictures of Raul to give to them when I am back in Romania. I didn't want to remind them of the suffering they already know he endures, so I tried to pick pictures that did not show as much skin damage, and where he looks happy. It will be good for them to see how happy he truly is! And of course, part of me hopes that we can bring him back to Romania stronger, and in good enough condition that he could go home to his parents, though I know that is unlikely given medical expenses.

A Bumpy Road

Well this has certainly been a bumpy ride! We have had many issues, but are finally making more progress with getting Raul to the U.S. for medical care! His parents got his passport a few months ago with the help of Ciprian. And now, just recently, Ciprian and Raul's mother met with Dr. Delia to discuss the plans. Dr. Delia has agreed to having Raul travel abroad, and discussed the testing and possible treatments with his mother. She is requiring that the parents sign a legal document with her agreeing to sending him abroad, which will keep her from any legal challenges with the family later regarding this (a good idea!). Hopefully a lawyer will be procured next week to make up that document. In the meantime I am working on getting the hospital letters from the hospitals here that we need for his visa appointment. He will likely be seen at both Colorado Children's (to be screened for the BMT trial) and Massachusetts General Hospital for local testing/care. The last things will be to finish up our sponsor letter for his visa application, and get all the supporting documents to the Embassy in Bucharest! This has been a long road, and you can't imagine how excited I am for Raul to get here!


Raul now weighs 14.5 pounds, so he has gained approximately 1.5 pounds in five months. His skin appears to be in about the same condition it was last Spring, but worse in a couple areas. His most affected areas are his feet (toes have fused), back, chest (very deep wounds), and genitals. His arms and legs are also bad in spots, though his hands are looking a bit better! He can now fully hold up his own head, and goes into the crawling position. A fellow teammate recently brought over a double sized playpen/pack n play thing for Raul to play in since his normal crib is very small. It seems to be great for him, and he is rolling around more. Hopefully he will learn to either crawl or walk soon if we can get his leg skin a bit better. He has also grown some little teeth :)

Winter Pictures

Summer/Fall Pictures