We got lucky, and this was the BEST case scenario we could ask for. This is awesome. We know to expect that he'll be admitted a few times throughout the high cold/flu/respiratory illness months. I can deal with that. We also know he's going to have a low threshold for work that may require added pulmonary support, like running, learning to walk, roll over, etc. But, we can work on helping him work on all those things. Not so bad, right?
The name of the disorder he has is NEHI (neuroendocrine cell hyperplasia in infancy). This is REALLY rare, so it's not 100% surety that he'll outgrow, but most of the known cases of it have indeed outgrown it. So, the odds are very much in Little Guy's favor. That works for me. I consider myself very blessed to know there is a light at the end of this tunnel for him.
We still have to work on the obstructive sleep apnea, which he may also outgrow. He's have a sleep study in September, and we'll go from there. No matter how you slice and dice it, though, he doesn't have the inoperable brain tumor they thought he had, he doesn't have cystic fibrosis, this isn't going to kill him, and more than like he won't have to live with this for the rest of his life. So, yeah. We are pleased. We will embrace what we do have to work with and be grateful for what it is...and what it isn't.
When a parent learns that their baby or young child has a hearing loss, they are often left feeling alone and unsure what to do. We've been there and done that with one Deaf child already, and we've just started the journey again with our newborn son. In addition, we learned our baby also has NEHI, a rare form of childhood lung disease. We hope that sharing our experiences will help inspire and encourage other parents of children with hearing loss or who may also have NEHI.
Showing posts with label lung biopsy. Show all posts
Showing posts with label lung biopsy. Show all posts
Friday, July 31, 2009
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