Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, September 28, 2013

NEHI-interstitial lung disease

There really isn't much NEHI information. Or many blogs that are recent. Most of the blogs are 2-3 years old. Rare lung disease... Crazy hemangioma... Tethered Spinal cord... Yet this almost nine month old is rocking it. There are some pretty upsetting times, like when the connectors wedge underneath the piano or the couch and her cheeks are pulled back like she has her head out the window and the wind is blowing like crazy... She doesn't think that is funny at all. Or when her brother/sisters don't watch very good and trip on her tubes. Or when the random lady at the store notices her canula is out of her nose and try's to help me put it back, but doesn't know we need to do it a special way. Those are few and far between. The rest of the time we play on the grass, discovering leafs, tasting leafs, getting tickled with things and learning the signs for tree, airplane, grass, and bird. 

I started thinking of ways to keep her healthy... I may even break down and buy an oil defuser for the house. I really should buy three.. One for each of Alex's classrooms and one for home. We are headed to get our flu shots this week. I am stocking up on Clorox wipes.. I really want those Norwich clothes... I might add them to my Christmas list:) I also need to find a pattern for a cart cover.. 
We can do this!!! She will most likely recieve Synigis. Those are a pretty penny. But worth it. Now, if we can just keep her untangled for more than a few minutes. 


Anonymous said...

Hello, I just read your post about your daughter with NEHI. My son has it too - they think...what a rough journey hey?

Rebecca said...

My daughter was just diagnosed and we are on synigis. Did it help your LO? Mine is 11 months old and she was diagnosed 2 months ago. The supplemental oxygen has made all the difference in the world. I'm so glad she isn't struggling anymore.