We met with Hannah’s developmental therapist today from Early Intervention. It had been a month since she was evaluated and accepted into the program. She was surprised at how big Hannah had grown and was very pleased to see that there was definitely some progress in Hannah’s motor skills. Hannah is now able to grab […]
[Continue reading...]Probable upcoming surgery
14 Jan by
When we met with the genetics doctor when we got the diagnosis, he mentioned she would receive the first few treatments of Cerezyme via IV and then they will probably want to put in a port so it is less stressful for Hannah. I didn’t think anything of it, as I think I was dealing […]
[Continue reading...]Gaucher in the News
13 Jan by
These are articles from my google alerts and other interesting articles I find about Gaucher’s Disease and Cerezyme in the news. There is so much that I need to learn, and I just don’t have the time yet, as we are trying to get Hannah’s medical treatment and insurance situation figured out. I’m posting these […]
[Continue reading...]Cord Transplant…a distant possibility?
13 Jan by
My sister-in-law (my husband’s brother’s wife) is due to have my new niece any day now. We were communicating a couple of months ago about using my niece’s cord blood as a possible transplant for Hannah. Unfortunately, the cord blood company needed 45 days notice before her due date to get it set up, and […]
[Continue reading...]For my commenters
13 Jan by
To those who leave comments on my posts, thank you. Thank you for being my support. Thank you for validating my feelings, even if you may not agree with them. Thank you for making me feel like I’m really not alone out here. Thank you for spending your quality time thinking about my beautiful daughter. […]
[Continue reading...]Telling our other kids
13 Jan by
Even though this blog really focuses on Hannah, there are two other VERY special kids that share our lives. I choose to keep their lives out of this blog because I’ve decided to only bring them in when it pertains to Hannah. After all, this is my current therapy for this whole situation. Big Boy […]
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