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Wednesday, November 26, 2008

Meds update!

I haven't written much this last week, mainly because I've been going crazy watching Seaira suffer in so many ways!
She saw her neuro this morning and he wants to change seizure meds all together, so here is what she is currently on...Adivant, Lamictal, Keppra, and Diastat (for emergencies). Just tonight we added Dilantin and a very strong dose. She will go 7 days before we can stop any of the others meds so she is going to be very drugged up! I am praying the side effects will not be too dramatic but God only ones what might happen!
I will try very hard to keep you all posted with in this next week or two!

Thank you!

Mini Miracles........

I recently found this website called Mini Miracles. They make clothing for special needs kids!
Seaira is modeling the Pajama's. I love them, they are so soft, they have a pocket that opens up for her feeding tube and snaps like the baby ones have for easy changing! They are great. We also ordered the onesies, T-shirt, and jacket. I love them all! The woman who owns or runs (not sure which, proabably both) the company is Victoria and she is the sweetest!
We were able to use Seaira's DDD funding for this, please remember that Seaira does not have a medical coupon nor any sort of waiver, this funding if I unsderstand correctly comes from a piolet program and she recieves it because she's not recieving the benefits she deserves, so if anyone recieves those kind of funds you can use them for this type of thing!

Monday, November 17, 2008

Here's the 411........

Very first and most important, I wanted to let you all know that Tatum, the girl Seaira went to school with, passed away. Please keep her family in your prayers!

Next, I spoke with Dr. Konkol's nurse today (the neuro) and we are going to increase the dose of Keppra to 4 ml's 3x's a day instead of 2. Even though this medicine takes away from her mobility, we have to get the seizures stopped and get her off of the Adavant and Diastat, those are two that are not suppose to be long term but have turned into a daily thing! Once we get seizures under control, then we can look at trying something completely different, but the goal is to get the nasty buggers under control and soon!

The latest!

Not much has changed here! She had one full day with no seizures and then they started right back up again! They seem be happening around 11pm to 1am and they are clusters that just don't want to stop until she is given her diastat! Then she spends the next day sleeping! :o(
I don't know what to do!

Sunday, November 9, 2008

They never EVER end!

Seaira and Aunt Nonna (Rhonda)

Ok so last neuro appointment we decreased the Adivant by just a little and the next day she has a couple mild seizures, that went on for a good 4 more days. So we decided to add back a little of the Adivant but not the full dose, well last night she ended up having a cluster of about 15 seizures and I had to give her the Diastat! Today she's just been real sleepy!
If I keep her on all the meds then she just lies in med all day unable to function right, if we decrease the meds at all them she goes into seizure mode and ends up being in bed all day! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

Thursday, November 6, 2008

Not working!

Things were going good, but the seizures are back! I must say that this time when I swipe the magnet across the VNS it is lessening the severity of the seizure which is good to see but they are happening none the less! I hate this! I think I'll give it another day or two before I change anything with the meds because they are so mild right now and maybe her body is just adjusting to the change???

Tuesday, November 4, 2008

Halloween and updates

First I should start with Seaira's Neuro appointment on the 30th! Things went well, her VNS got adjusted again and we are going to try to slowly come off of the Adivant this time instead of the Kepra, so far so good!!
Seaira had a really hard time trying to sit with us while we carved pumpkins. We tried having her in her wheelchair up at the table but she was uncomfortable, I'm still not sure exactly what was bothering her but finally we got some blankets and pillows and put them on the floor and we tried to show her everything we were doing and that worked the best!
On Thursday we did a Trick or Treating event at the state office that is put on for foster kids and their families! All the case workers decorated their work stations and passed out candy, it was really cute! There was also a pizza party afterwards! So we made that Seaira's Halloween and then her and Isaiah helped me pass out candy on Halloween to the 3 trick or treaters we had!
Seaira doesn't like being dressed up in costumes so I just get her a cute Halloween outfit from Target and call it good!! She has been really enjoying eating all the candy! =)