Tuesday, May 31, 2011

Weight loss!

On last week, my princess had to go in for her bi-monthly weight check.  The first since her cluster seizures and cold!  Unbelievably, my sweet girl had lost a total of 5 lbs.  I was devastated so that I had to just sit in the parking lot once we were loaded  just to gather my thoughts and compose myself.  To hear this just took something out of me.  We've been working so hard to get her weight up, now she was down  2 lbs more than when we first started with the high cal PediaSure/ 4 per day ( sometimes she"ll manage 3 ) and trying to  get her weight up so that she doesn't have to have a tube placed.

God is AWESOME and there is power in His name and we are going to get that weight back up.  We are now back to monthly weight checks.  So by the end of June she will have gained at least 2 lbs, believing it!

We're striving!!

More to come...

Friday, May 13, 2011

Busy schedule

Since the last post, my little one has been free from noticed seizure activity.  I say noticed because a previous EEG showed that she has "quick fires" while asleep.  Even though she has not had pronounced activity, we have been very busy with making sure her scoliosis jacket is a good fit for her, and that the night time splints meet the specifications of or orthopedic specialist.  Not, the case, the jacket is back with the orthotics office to get some adjustments made and doctor does NOT want her sleeping in the splints just yet, just place them on her for two hours at a time and take them on to make sure there are no pressure spots or anything to cause irritation to her ankles.

My sweet daughter was only able to go to school two days this week, because she has been under the weather with a little cold, she's finally coming around...its been a battle.
Not only has the cold been bothersome to her, the Zonegran has had her in a major fog, since the dosage had to be increased.  Now, per the instructions of her neurologist, she will be weaned off of it over the next three weeks and re-introduced to the Topamax.  Just another complicated schedule this mom has to keep  up with!! OH JOY!!  It will be done, because it has to, and with God as the center of our lives, this and everything else that comes our way will work out just fine.

More to come...