Seizures .... will they ever stop? .. todays was very different from anything she has had in the past .... she was fine and playing then all the sudden is was like you turned off a switch .. she was out!  An hour later it happened again. .. I am going to make sure her teacher knows what we saw, and calling the DR in the morning!.

I was thinking about this the other day so I wanted to put it down here is what everyday is like for Madison.

We start the day with Nexium while we wait for that to coat her stomach I blend her some meals, clean that up then feed her then give Baclofen and Carbidopa Levodopa, after that I eat. Since its summer the nurse comes at 10.  Around noon its lunch with more Baclofen and Carbidopa . She will play some, be put in the stander for about 30 minutes. Everyday but Friday she has therapy. Sometimes she will sleep after they all leave, then it’s the last Nexium and 1 last Carbidopa for the day, then we all eat dinner with Zonusamide and Miralax before bed time and a bath.

She sees the following specialist - a Neurologist, Neurosurgeon, GI, Physical Medicine, ENT, and her Pedi  on a regular basis.  I feel we are blessed we don't have a cardiologist or Pulmongist and no tracheotomy.

Things could be so much worse - she has gained about 6 lbs this year - last September she was at 21 lbs, and now were at 27 lbs and over 3 feet tall, this makes her -5 % on the growth chart for her age.

Frustrated, I have been adding carnation instant breakfast to 2 of the 4 feeds and Madison has only gained 1 lb since December.  Her acid reflux seems to be under control with nexium.  I am going to add 1 more carnation instant breakfast and an oral feed. I feel like we are just at a stand still as far as weight gain, I wish I knew why she cant gain weight!

Seems it’s been some time since I last posted.  Madison has had 2 shunt revisions, and corrective eye surgery. 2 -3 weeks after her eye surgery she started a modified army crawl! She uses just her left arm and her legs to pull her self across the floor. 

Madison is now a Daisy Girl Scout; the first meeting I was almost in tears, when we walked into the room, several of the other girls said "I know her, that's Madison! She goes to my school, she's my friend!" Made me so happy to know Madison was accepted!

Today we start cookie sales....I bet she sells the most!