Wednesday, Hannah had her first Cerezyme treatment at the Children’s Center for Cancer and Blood Diseases here in Las Vegas. We met Dr. Jonathan Bernstein, and I loved the man. He seems like just the kind of doctor I like to work with — very interested in learning more, outgoing, willing to spend quality time with us, and just a genuine caring man. That was a huge weight lifted off my shoulders because Cerezyme is Hannah’s lifeline. Her first LV treatment went off without a hitch.
Yesterday, Hannah had her GI appointment with Dr. Dezenberg. Our day nurse came with me, and she was a huge help! After meeting Dr. D yesterday and meeting his partner, Dr. Barron, a few days earlier in the hospital, it was another great “personality” match for us. He checked Hannah’s G-tube, and he said it was really look great, healing-wise. He had to burn off some of the granulated tissue surrounding it with some silver nitrate, but since it was slow healing he prescribed us a couple of ointments to get it healing a bit better.
But he thinks that we could definitely start getting Hannah on her tummy again, with monitoring of course! We also talked about a new feeding schedule since her stomach is still thrashed from the rotavirus and has not been able to keep foods down like she was last week. So she is going to be pretty much on a continuous feed, 5 hours on with 1 hour off, at a very slow rate until we can build her up again. So far since this afternoon, she has been tolerating it pretty well.
The rest of our schedule is like this:
Today: Neurology, Dr. Maller
Tuesday: Pulmonology, Dr. Parks
Wednesday: Speech and OT evaluation at a private therapy group
Next Friday: Meet our new pediatrician, Dr. Larsen
Following Monday: PT evaluation with private therapy group
Few weeks: Evaluation with Early Intervention
I’m very interested in what Dr. Maller has to say, especially with regards to this choreathetoid movement disorder. I’m also need to find time to really start searching out an expert on choreathetoid movements and see what is out there for Hannah because there just has to be something out there that can help her. If anyone has any suggestions or knows of anyone, let me know!
So glad that you got a good match! You’ve really been blessed with Dr’s!
I LOVE Doc Bernstein! Such an interesting fellow 😉 I hope today with Maller goes well. Like I told you a few times. Maller and one of the doctors at UMC are my “comfort docs.” (As in, the only ones I know I can trust at all times). I am pretty sure V had the choreathoid movement issues from being over medicated (at Sunrise) and they did go away once the withdrawl were over. Maller walked in the room and recognized and took steps to resolve the problem on sight. I sure hope the same is true for you.
I would love to get together with you this weekend. You are gonna have piles of stuff everywhere for many months to come. It sounds like you desperately need a break in one form or another. Maybe Daddy can watch hannah and you and the big kids can come over? Or you can all come over? Or I can come there? You have my email and I have facebooked you my number in the past.
I really wish there was more I could do! Oh and don’t worry if you don’t love Maller at first sight. Her biggest asset is her undying steady resolve, its not her sunny personality or her office staff!
I know, two comments, I have reached stalker level. I have been worrying about you all day. Don’t worry too much about the g-tube. If she’s got a peg, its not falling out and if its a mic-key it will only fall out if the balloon pops, which is not happening if it was just checked.
We have a video game chair that works well in lieu of the bouncer. A highchair that leans back also works. We have one of those you can use also. Also, a stroller with a seat that leans back works well also. And a car seat or an infant car seat also will work.
Hang in there. Being at home is scary at first but it gets better. A big part of that is you gaining confidence and finding the limits of what is safe and what is not.