We had our official first transition meeting with the school district today. Hannah ages out of early intervention in just 6 months! I can’t believe it! It was a very informative meeting. We talked about the options that we have such as putting Hannah into a school setting versus teaching her in a home setting. […]
[Continue reading...]Trach scare x3
14 Jan by
For the past two days, Hannah has been more junky than usual trach-wise. We felt like an infection was brewing because her secretions were no longer clearly and liquidy but were becoming greenish and thick. We were also starting to suction more often than usual. Last night, Hannah woke up at 1 am. She had […]
[Continue reading...]Two steps forward…hopefully
12 Jan by
Before Hannah got sick this summer, she was just starting to cruise around in her gait trainer. She loved chasing the kids in her walker, and she was pretty good at standing for 10 to 15 minutes at a time assisted. Fast forward to today… very weak legs, more significant hypotonia. Right now, she can […]
[Continue reading...]I Heart Her
12 Jan by
I was going to write a post about how Hannah’s disease is definitely showing signs of progression, although some of it can also be blamed on the hell she went through this summer and the permanent damage all those sedatives caused…but I don’t want to. Hannah is now sleeping in her crib in our bedroom, […]
[Continue reading...]Goal #2: Educating the Professionals
11 Jan by
On January 24th, I have been invited to give a web conference to all the Genzyme Case Mangers and Patient Care Liaisons. It will share our experiences with raising a type 2/3 child, educate them on what type of support parents of neuronopathic children need (which is much different than a type 1 patient), […]
[Continue reading...]Goal #1: Jeans for Genes on World Rare Disease Day
7 Jan by
As I mentioned in my previous post, my dear friend Julie kicked my butt into really going after the changes I would love to make. Goal: For my kids’ school to allow jeans to be worn in honor of the Global Genes Project on World Rare Disease Day, February 28, 2011. Even though they are […]
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