Tuesday, May 31, 2011

Raul Update

Raul looks like he is doing really well in recent pictures! They have gotten him a bigger crib, so he is rolling over and pushing up while he plays again. They also put the wheels on his walker, and apparently he is scooting all over, which is just great!! It is so nice to hear positive updates about him right now as we wait on the decision about his humanitarian parole. Enjoy these pictures!

Paperwork Submitted!!

In the last two weeks we have gotten together all the forms and letters (50 pages) needed to apply for Raul's humanitarian parole! Today we were able to mail the package, and it should arrive at the USCIS by tomorrow at noon! It will likely take a few weeks for them to get to the case, and then to consider it, but the case will be expedited by two different senators offices.

Sunday, May 22, 2011

Real Life (wounds)

*edited for publicizing the blog (some pictures have been removed)

While I like to post all the smiling pictures of Raul, those smiles are often few and far between, and I feel like I should share more about what his life is really like. Some of these pictures are graphic of his wounds, but again, this is life for Raul and those of us that take care of him!

right leg

patiently having his arm wrapped (usually he screams an awful scream the whole time)

bath time in a normal bath/way = more screaming from baby

his toes have recently fused (he hasn't had nails since he was a few months old)

he should not be picked up by under his arms, but sometimes they do it anyway

sweaty chubby baby neck=bad wounds

back one year ago

trying to sleep through the pain with blisters on his eyes (they can occur on any membrane, including his eyes and all through his GI tract!)

Goodbye Raul

Leaving Raul for the final time (I think he knew)

An Angel in Scrubs

She may not have medical expertise, or even a college diploma, but Coca is an expert on Raul! She has a mother's intuition, and truly cares about Raul and what he wants and needs. She loves him deeply, and I can tell it hurts her heart, as it hurts mine, when we have to change his bandages and cause him pain. The first time she saw him at the new hospital (she is from Tutova) she cried seeing how badly they had been taking care of him and how much pain he was in. She has come faithfully every other day since the hospital transfer to bathe and dress his wounds, and spend time playing with him. Coca is the only reason I don't feel totally awful about leaving Raul behind in Romania as we figure out the humanitarian parole, as I know she is caring for him the best that she can. She is his guardian angel...

The (Abridged) Medical Visa Saga

For those who don't know his story, Raul has Epidermolysis Bullosa. He is 19 months old right now, and has lived his whole life in hospital isolation. Due to financial hardship, the hospitals are not able to purchase the supplies he needs, and so they isolate him to try to help prevent infection. Knowledge about EB is not common in the area where Raul lives.

The tests and treatments that he needs are not available to him in Romania, and that is why we began pursuing an international medical visa almost one year ago (as you know if you have been following the blogs). It took an entire year to get everything straightened out with both the Romanian and American hospitals, and to help his parents to understand his condition and what is available to him abroad. We thought we had everything figured out, but after two ten hour round-trip visits to Bucharest this week, Raul has been denied a medical visa. The reasons they gave being, 1: they did not believe we would bring him back despite signed legal documents (they didn't think the parents were involved enough in his life to count as the necessary incentive to return), and 2: the parents do not qualify for visas to the U.S., and somehow that means Raul does not either even though they will not be traveling with him.

We were advised to try to get him humanitarian parole, and are also getting U.S. senators involved. Raul is refusing to eat at this point, and desperately needs more intervention. We need to get him here as soon as possible to treat his severe malnutrition and evaluate his EB. We may be at the point where a G-tube is necessary for feeding, which is unfortunate, but he is just not eating. He will also be screened for the bone marrow trial!

We should be able to submit his humanitarian parole paperwork this week, and with the help from the senators we are hoping he could be here in a couple weeks!