Tuesday, February 15, 2011

Appointment update

We met with the neurosurgeon yesterday, and I really liked him. He was very personable, and explained things completely. I already knew all about the VNS from researching it so much and talking to other moms, but it was nice to have it all laid out by him anyway. We went over all the "informed consent" that he required, and then I signed consent forms. Now I just wait for the authorization and then we schedule the surgery. He said it should happen within 2-3 weeks. I am hoping it is sooner than later! I know that the VNS will be placed and left off, and then turned on later and adjusted for a while. I know that the process may take some time, but I am anxious to get it started.

Emily had a re-evaluation by her OT and PT today, and it really brought to light what these seizures are doing to her. They haven't worked with her for months, as she doesn't receive regular therapy right now. She hasn't met any goals for a year, and she doesn't cooperate enough to benefit from therapy. Add in the seizures and medical instability, and there's no use going to therapy right now. Anyway, they were doing her evaluation today and it was hard to sit through. There are some things she is doing great at. She is doing great at picking things up, touching different textures, etc. She is doing great at crawling to toys, unless it's a really bad seizure day. But her balance is much worse, her posture and stances are much worse. Her protective reflexes are now delayed by much more than they were. Little things that just show how much these stupid seizures are tearing her down. We have GOT to get them under control!

In better news, the Banzel she is on does seem to be helping. She is having many less atonic seizures than she was. She can go 30 minutes sometimes while sitting on the floor without a single atonic seizure! I know that doesn't sound long, but it was literally every 30 seconds for the last few weeks. Her myoclonics are a little better as well. We are seeing a new seizure type though, where her eyes kind of roll up and around in a circle, and her lip twitches. It is very subtle, and it happens in 2-3 seconds. She does it off and on all day though.

Her gagging and retching from last week is gone. I figured out the cause finally. We were trying to increase the calories in her overnight feed, as she has been slowly losing weight. When I went back to the lower calorie feed, she did fine. Tried upping it again, retching and gagging. So I have an email in to the dietician to let her know.

Her g-tube site has been angry lately, I am going to call the GI in the morning. She has always had a BEAUTIFUL g-tube site. Never needed gauze, never leaked, not had a granuloma since the very first few months of placement. Now it's crusty, red, weepy, and raw. I am ordering some Button Buddies to help, but I think it needs to be seen by the GI in the meantime.

In some GREAT news - her Sleep Safe Bed is being delivered on Thursday!! I don't know when it will be put together, as it is part of her Make-A-Wish. I have to call them in the morning and let them know it's scheduled for delivery, to find out if the rest of her bedroom make-over is ready. Then we can set a date for the wish to be fufilled. I am SOOO excited for her new bed!! :)

As always, I like to end this post with a FUN picture. This was taken Valentine's Day weekend at a birthday party we were invited to. I love this new shirt she's wearing from 3E Love!! If you haven't checked them out, you just have to!


Alison said...

That is a GORGEOUS photo of her. I hope the surgery goes ahead ASAP. Will be thinking of you.

Our Family said...

beautiful girl! hoping for good things!

Amber said...

You are going to LOVE the Sleep Safe bed! We have one and it has made a huge difference in our night time routine. My son is safe and comfortable.

Do you monitor Emily at night to keep an eye on her seizures? My son has seizures too and I'm most worried at night when I can't see him. We have a video monitor that I keep turned up and right next to my bed so I can hear every movement he makes, but I still worry!

Michelle and Sean said...

Praying they can get the VNS scheduled quickly for Emily!

We never had real g-tube problems until Maggie ripped her tube out two weeks ago and now its been downhill from there. Its really frustrating. I hope they can figure out how to keep the irritation away. I wonder if you just keep her feeds lower, to the point where she isn't retching if then it will heal. Who knows these little kiddos are so tricky and like to keep us on our toes!

The VW's said...

What a sweetie! She has the best smile and the most gorgeous eyes!

Praying she can get in quickly for the VNS....and I pray that it does wonders for her! Hugs!

Becky said...

Wow! So much going on right now. I can't wait to see what a difference it will make in her life. Hang in there!!!!

Carla said...

Love the pic of her, so sweet. Hooray for sleep safe beds! I know you've been waiting along time to get one. Hopefully the VNS will work wonders. There is a hydro boy who has one & his mom gave a detailed acct. on how she decided to get one & his results. You can read about him at fetalhydrocephalus.com. He is the amazing Owen:)

Lucia said...

What a cutie! I love her hairdo! Big smile as always!


Love the photo. She is precious and that hair! Oh I wish I had 1/2 of that hair. And I'd wear it just like that!