Thursday, September 10, 2009

Increase Banzel

Reagan finally slept well last night. Thank goodness. I did not feel like getting up again for another late night rendezvous. Which is good because we had a busy day today. This morning the ECI coordinator came by to tell us that Reagan's vision services still haven't been figured out. It's ridiculous that it's taking them so long to get the ball rolling with this, it's not like we moved from another state, we just switched counties. In my experience of late, anything going through a state run agency is extremely slow and covered in red tape. I still haven't been able to get them to change our address on Reagan's medicaid card (which means we haven't gotten one in two months). When I called the 1-800 number they told me that my name wasn't on the account and that they couldn't discuss anything with me (who else is supposed to deal with this...Reagan?) and then when I call the local number it just rings and rings and rings. No one ever answers (no matter which button you press) and there's no machine to leave a message. Talk about ridiculous. Anywho, sorry for getting sidetracked, then we headed over for Reagan's Feldenkrais lesson. This is her 3rd week of sessions (although this week was cut a little short with the labor day holiday and with her getting sick yesterday). I am noticing some changes. They are slight but noticiable. She's still extending a lot, but it has gotten much easier to break her out of it. She also has a tendency to look in one direction (to her left when laying on her back and to her right when on her tummy or being held), but just the last few days I've noticed her voluntarily turning her head back and forth during the session looking around at things. Like I said, little things, but I'm hoping they'll all come together and eventually we'll see some big steps forward. I do think it helps having the sessions on a regular basis. There was no way we could have afforded to do these sessions out of pocket 5 days a week; what a blessing it is to have this practitioner offer her services to us free of charge. I'm not sure how long this will continue, but for now we're just going to go as often as we can to see if it helps Reagan. Then we headed over to feeding therapy. At this point Reagan was exhausted and fell asleep in the car. I picked her up and took her in but she was still out cold! Totally limp. She slept through most of her session, which allowed her therapist to do some serious mouth stretches that she wouldn't have been able to do otherwise. She woke up with about 15min left but she was having so many seizures food was not a good idea. Poor thing. They were really knocking her for a loop. Speaking of, I increased her Banzel tonight (1/4 tab 2x day). It wasn't really time to increase it (he wanted us to wait a whole week) but I haven't seen any problems with increased sleepiness or anything since we started so I thought I'd give it a go. She sure needs some relief from these seizures. Please keep it in your prayers that this helps. She had a little bout of tummy pains tonight so I'm hoping her sleep is not affected. It's actually been almost 2 weeks since her last tummy pains so I was hoping things were getting better in that department. I don' t know if the Duocal has been helping her or what, but things have been pretty regular and happy since we started her on it (although that's not its intended purpose). Please keep her in your prayers...we need this darn Banzel to start working!!!!

3 comments:

jocalyn said...

ugh. We had the same problem. Call your MDCP case worker (or e-mail them) and ask who your Medicaid case worker is. (I didn't even know we had one of those until a few weeks ago!) Then ask for their direct number. Then maybe you can get it fixed. Worth a try. But it is added frustration you don't need right now...

Good Luck

JSmith5780 said...

When I am at the end of my rope dealing with Medicaid, I call my county rep. I suusally have a call back from her within 1-2 hours. And then I get a call from medicaid shortly thereafter. Do what works. Hope the Banzel increase helps.

Dawn said...

I am definitely praying hard for the Banzel to work. I suppose it's a little selfish on my part because if it works for Reagan then maybe it could work for my daughter. I hope that doesn't sound as bad as I think it does.

Honestly, I'm grasping for any lifeline that I can find that may at least lessen Taylor's seizures if not stop them all together. I'm guessing you seizure moms understand.

Thank you again for sharing this journey. Even though my "baby" is 18 years older than yours, I can still learn things.