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.