I have had so many wonderful comments on my post below regarding whether or not to bring Hannah to the NIH. There is just so much to think about. The truth is, we already have the best of the best neurologists for Hannah, who actually used to be at the NIH. Dr. Sidransky even admitted that there isn’t a lot more we could get from her in terms of learning how to treat Hannah because she has such top-notch doctors. It would be more for their research benefit because Hannah is just so unique. But having someone like Dr. Sidransky involved in Hannah’s case would be a huge benefit because she is just so well versed on GD23. THAT would be the reason we would go.
We are leaning towards going there. We have to figure out money for Abby and Ethan to fly out there. My aunt and uncle live in DC, possibly very close to the NIH, so I am going to ask them if maybe they would be able to keep the kids during the day for the testing or maybe Daddy could take the kids and explore DC while I am at the hospital with Hannah. Daddy has to go, because they want to do some DNA testing on us as well. When we told Ethan we may be going to DC, he almost jumped out of his chair and said “Can we go to the White House?!” (They have been learning about government in school LOL).
Another part of the problem is that we will be going to Michigan in the beginning of May for a specialized brain scan for Hannah. I can’t share details now, but as soon as I get permission, I will. It is just for research purposes, but it has never been done on a Gaucher’s 2/3 patient before.
Daddy can only take off so much time for work, and he definitely does not want us to go to Detroit by ourselves LOL. He’s protective that way.
Also, Hannah has SO many different tests coming up besides the specialized brain scan including a brain MRI, echocardiogram, ultrasound, swallow study, neuroopthalmology exam, and I know there is something else I am forgetting. And this is all within a 1- to 2-month period. Not to mention she still has her Cerezyme treatments every two weeks.
Just a lot to think about…
Hey there, sorry I haven’t e-mailed back. Life gets too crazy. Still want to get together for lunch soon? And if there is anything I can do to help you get to the NIH, just let me know!
Wendy’s last blog post..PBJ
Hi Carrie:
Addi and Cassi are part of an NIH study for Niemann Pick Type C disease and I highly recommend participating in anything involving the NIH. I know that Addi and Cassi are providing critical information not only for NPC but for solving bigger mysteries involving lipids and cholesterol that impact millions. Hannah is that miracle baby like Addi and Cassi — she is going to help solve something very important.
The doctors at the NIH are amazing — you realize when you’re there how lucky we all are to have the NIH. Dr. Denny Porter runs our study — he is an amazing doctor and the more people you have thinking about Hannah’s disease the better chance you have at finding a solution to help her.
The Children’s Inn is wonderful. You will meet other families facing different difficulties — we met a Batten family and also a family that had a baby that did not make copper. You need copper to survive. I had no idea.
The first time I took my sister with me. If it’s too much to take the entire family, just go with Hannah and a family member or friend.
Let’s chat by phone – I have some tips for you since I have been twice now!
Best,
Chris
Chris Hempel’s last blog post..Apo E Gene and Diet
I think it’s hard to walk that fine line between protecting your child’s health and privacy and allowing researchers to learn and study your little one for future generations. As a parent of another one-of-a-kind kid, I understand your dilemma.
I’d say as far as research institutions go, however, the NIH is one of the best in the world. Period. Making those connections can have a huge impact on your child’s care, giving you access to studies and treatments that may not be available to someone without those connections. I’d say go for it– and if you can make it a family trip, all the better.
The appointments get kind of overwhelming, don’t they? I look back on our calender at the end of the year and can’t believe how much we managed to cram in. Believe it or not, it kind of gets to be routine after a while– you learn to schedule in those relax times and somehow make it all happen. Though I haven’t been too wonderful about that myself, lately. We all get burned out. 🙂
Hope things go well for you.
~Jess
Connor’s Mom’s last blog post..Coming Out of Hibernation