Wow! I can’t believe this day is finally here… We are just a couple of hours away from heading to the airport to go to the NIH (National Institute of Health) and meet with Dr. Sidransky and her team. As I mentioned yesterday, I really am nervous about the brain MRI and BAER test…the thought of […]
[Continue reading...]One day until we leave for the NIH
12 Jul by
The house is eerily quiet this morning. My mom flew in from California on Friday afternoon and flew back with Ethan and Abigail yesterday. I’m not used to so much quiet in this house! I will admit, I am getting very anxious about this trip to the NIH to meet with Dr. Sidransky and her […]
[Continue reading...]Hannah’s 2-month physical therapy evaluation
11 Jul by
Pam, Hannah’s physical therapist, put together a PT evaluation for Dr. Sidransky and her team at the NIH. Hannah Ostrea was seen for the initial Physical Therapy evaluation on May 06, 2009 here at the Texas Children’s Hospital HealthCenter Initially, Hannah was able to roll supine –> prone with SBA (stand by assist). She was […]
[Continue reading...]Be at Peace, Cooper Wilson
9 Jul by
I’ve been following Cooper and his family for months now. Cooper was diagnosed with GM1, another lysosomal storage disease. He had just turned two a few days earlier. “Cooper peacefully earned his wings this afternoon as the three of us sat on the swing outside. We were talking and rocking, and he just decided it […]
[Continue reading...]Here is what it is…
9 Jul by
I have been soul searching and trying to figure out why this probably tracheostomy need is eating at me. After talking to a couple of friends and reading thoughts from other moms who have gone through this, I know what it is. Denial is a beautiful thing. I remember at the Texas Parent 2 Parent […]
[Continue reading...]Be at Peace, Gage Pruitt, beautiful boy…
8 Jul by
Gage passed away. I feel like my heart is being pulled from my chest right now. He had Wolman’s disease, another lysosomal storage disease like Hannah’s. His mom and dad fought so hard for him, so damn hard. Mary, I wish I could just give you a hug right now, be there for you.
[Continue reading...]
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