I just realized that it has been almost 8 months since I did the last general Hannah update! Where Hannah is at (20 months 0ld) Physically, Hannah is doing pretty stable since her last update. Hypotonia (muscle tone weakness), especially in her legs, is still pretty significant. However, thanks to hydrotherapy, physical therapy, and lots […]
[Continue reading...]Getting back into routine
23 Mar by
Hannah had a rough day today. She seems to have developed a cold and congestion, which wrecks havoc with her ability to sleep. Last night was probably the hardest night in many, many months, as she and I were up much of the night. Then, she had to go downtown with Daddy to get her […]
[Continue reading...]NIH visit roundup
22 Mar by
Wow, what a whirlwind week this has been! I will probably create a few posts to share about everything that went on this weekend because there is just that much that has gone on! But first things first…. Hannah was a great trooper at the NIH this visit. She was a lot more cranky than […]
[Continue reading...]NIH Day #1, complete!
16 Mar by
Hannah did pretty good her first day of testing! The morning started with meeting with Dr. Goker-Alpan, Catherine (the nurse coordinator), and Dr. Sidransky. They all separately commented on how they couldn’t believe how much Hannah has grown! They all commented how she totally looks like a toddler now and lost the baby look. But […]
[Continue reading...]Being part of the IN crowd
13 Mar by
I have been dreaming of this moment for many, many months. But she finally has conquered this. Hannah can now put something IN a box! She mastered taking OUT for quite a while, but putting in requires both cognitive learning, eye movement control (which hers is very poor), plus communication skills (her weakest point). She […]
[Continue reading...]NIH itinerary – the list!
12 Mar by
We just got our list of tests and consultations that they are going to be doing on Hannah next week. Fortunately, they have spaced them out so that she only has 2 or 3 things a day! EEG BAER (hearing test to see if she is hearing things correctly) Neurology evaluation Abdominal ultrasound Skeletal X-rays […]
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