The NEWER New Plan

I've typed this up once and am having to edit it now because there's been yet ANOTHER change of plans.  Danielle is having her surgery on Monday.  We're starting her tomorrow morning on a drug called Topamax to treat the infantile spasms.  This is the least aggressive of three options that we were given.  The treatment option that the neurologist was pushing for is called ACTH (a steroid treatment), but she was only considering her organ of expertise.  Danielle's cardiologist weighed in and advised that ACTH, because of the side effect of high blood pressure, would be to aggressive for her considering her heart defect and would inhibit healing after her surgery.  The two options that we are left with are a drug called Vigabatrin or Topamax.  Vigabatrin has more serious side effects but is more effective.  Topamax shouldn't cause any serious side effects and it has been in use to treat infantile spasms in the U.S. for a long time.  We requested the opinion of a second neurologist who advised to start with Topamax, and that was consistent with what Steven and I where leaning towards.  They will start Danielle on a small dose and increase it as her body adjusts to the medication.  We'll watch her progress and get another EEG while Danielle is in recovery after the surgery.  If the medicine is working we'll be able to wean her off after about 12-16 weeks.  She should be seizure free after treatment.  If Topamax doesn't work, we'll switch to Vigabitrin, and the last resort for us would be ACTH, after her heart has been repaired.  I am praying that the Topamax works.  This is a long road for some children and if the spasms aren't controlled, it could cause her cognitive delay.  I'm trying not to fear the worst, instead using my energy to pray and hope for the best.  PLEASE keep her in your prayers!

Danielle had a good day today.  We haven't started the treatment yet, but she only had one episode, which is much improved from yesterday.  She is her smiley social self.  She seems to be enjoying her stay at the hospital.  She meets so many new friends.  Every time there's a shift change and she sees a new face at her bedside she gets giddy.  I even got her to chuckle a bit today, when we made up a new game involving taking turns spitting out a pacifier ;-).

Steven has been my replacement for the past few days and I have to say I'm pretty impressed.  He's an awesome Mr. Mom.  He's gotten more laundry done than I would have given the same amount of time, he took Justin for a Dr. appt today with great success, and he's keeping these kids busy and happy.  They look like little ragga-muffins, with their dirty faces and un-kept hairstyles, but hey, that's what happens when you're having fun.  We're switching roles tonight so I can get some snuggle time with the kids and possibly watch the Greys Anatomy/Private Practice that I tried to watch at the hospital last night without much success.



Mom's making me do PT even while in the hospital... I secretely enjoy it though ;-).

I came home tonight to find these Get Well cards on our doorstep.  I was so emotional as I stood at our kitchen counter reading these.  My favorites said "I love your face when you smile," and "I hope the surgery doesn't hurt, U R so cute."  They where all sooo sweet.  Thank you Brownie Troop 276!