My pity party from yesterday morning is over. I guess I need a good cry and lashing out every once in awhile, because I’m back to feeling motivated and ready to kick ass against whatever is going on with Hannah. There are so many things I need right now to deal with this, and it […]
[Continue reading...]Dear Hannah
24 Nov by
I just checked on you. You were sleeping so peacefully in your bed. Your hands outstretched. You even kept throwing glances of a smile. Were you dreaming? I’m sorry for the hell you went through today. You have been through so much already, and you handle it all so well. When you were screaming when […]
[Continue reading...]Laryngomalacia
24 Nov by
Just got back from the Ear, Nose, and Throat specialist. She had to stick a tube with a camera down Hannah’s nose, while she was wide awake, to check out her structures. I’ve never heard Hannah scream like that before. I actually started losing it during the 3-minute procedure, but I didn’t. Apparently the sound […]
[Continue reading...]Preparing for the worst…
23 Nov by
That old addage “preparing for the worst, but hoping for the best”… that is where I am right now. I’m tired of crying about the “what if’s” and the “could it really be true,” I’ve decided to just prepare myself for the worst — that she has Niemann Pick type C, the lead diagnosis we […]
[Continue reading...]Milestone reached!
21 Nov by
Just one week shy of her 4-month birthday, Hannah reached out and grabbed a toy for the first time!! Yay! An important milestone reached! I hope she continues to try and reach for everything she wants! [youtube=http://www.youtube.com/watch?v=o3tTcUOb7vw]
[Continue reading...]Early Childhood Intervention appointment
20 Nov by
The lady from ECI came over this morning. She is a nurse that works to assess children to see if they qualify for the early intervention group of programs. We went through all her symptoms, and the list of specialists that she currently has (a pediatrician and 5 specialists). Because of Hannah’s possible diagnoses, she […]
[Continue reading...]
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