We had our developmental therapy session with J. today, and Hannah was just not in the mood to participate! She was so exhausted, which I have noticed quite a bit since the Cerezyme infusion on Monday. As a matter of fact, she fell asleep not 5 minutes after J. left — out like a light! She agreed to do what Dr. E. and Dr. B. (genetics doc and pediatrician) requested, which is to reevaluate her progress every 2 months instead of every 6 months to see where she is on “her” curve, which we know we started about two months behind. Hopefully we stay on that curve!
VERY cool thing though, Hannah is learning to balance herself sitting upright! She was actually able to sit in a sitting position, big belly and all, for quite a few seconds at a time with just some mild bracing from me to bring her back to position. You can feel her trying to balance herself. Very proud mommy here! She doesn’t try to balance herself with her hands yet, but J. showed me some suggestions on how to get her to think about doing that.
We are heading up to Dallas tomorrow morning, first thing, to meet with Dr. S., the Gaucher’s type 2/3 specialist. I’m very anxious, excited, and nervous. I really hope we can get some answers, and I hope we don’t leave there knowing nothing more than we already know. I confirmed that Dr. S.’s office has her medical records from all her doctors (except her pediatrician, but those are just basics). We were told to plan to meet with him for about 90 minutes. I have a lot of questions, but I better make sure everything is written down so I don’t forget!
Since Dallas is almost 4 hours away, we are making this a family road trip and are taking Big Boy E and Little Girl A out of school for it. In order to make it less about Hannah’s appointment (which for me and my hubby it is definitely about), we are going to spend the night up there and spend the day at the Dallas zoo on Friday. Kind of like a mini-vacation. This way, the older kids will focus less on the doctor’s visit and more on the fun.
I’ll be bringing my laptop, so I will try and get a post out tomorrow night after we are settled into our hotel and update everyone on what happened (I’ll also facebook/twitter updates as I can before then)!
I am listed as Glendajohnston. I would to share my page with Hannah.
I do not know where to get the banner for hannah.
Thank you.
Glenda
I have said before and will say again – even though I cannot see Hannah physically it seems hard to me that anyone thinks she is delayed. My rolly polly daughter didn’t sit by herself until she was 6 mos old, didn’t roll over until 7 mos, didn’t crawl (at all) until she was 9 mos, but was walking by 11 mos!
And with Hannah being premature…sounds to me like she is right on track. We also had to do some tricks to get Makena to be on her hands and knees to prepare to crawl. she really would just take nose dives for the longest time.
good thoughts for good news tomorrow! But we will all be here to help no matter the outcome.
Sounds like a nice family outing. I’m sure E and A as well as Hannah will enjoy the trip. I will be thinking of you tomorrow. I’m sure Dr. S. will be able to answer a lot of your questions. Hopefully he can give you something more definitive and hopefully it is all positive. 🙂
I wish that I was able to be off work Friday so that we could meet you at the zoo! My girls are already off- but I just can’t swing it. Hope you have fun and that you get some more answers.