- We have 11 days until we go to Grand Rapids. So excited about this, yet there is so many things to arrange and get ready. Organize Grand Rapids time and here time.
- Daniel went to his Dietitian on 04/20 (Rebecca Sparks) and since she changed in caloric intake about 2 months ago, he has gained 2 pounds (very good) and grew 3 more inches in his height! (Don't ask where his height is coming from cause neither Lonnie nor I are tall!)
- On Sunday (04/22) when we were outside playing, Daniel appeared to have a seizure, very disheartening. Stomach & heart dropped to my toes.....it had been about 14 months since he had a seizure. Just sucks. Anyways, I immediately sent an email to Dr. Chugani (remember its Sunday) and he responded back within an hour. Damn he's good! So we had to up his morning dosage of Vigabatrin to a whole pill, and are now scheduled for another Video EEG (24 hr)
- Besides the seizure which puts your body out of whack (headaches, tummy aches, drains you) Daniel is still teething. I believe he is cutting his back molars and they are big ones!! This also doesn't help with the seizures.
We have multiple reasons why Daniel could have had a breakthrough seizure.
- He outgrew his dosage because of his weight gain (it hasn't been changed for over a year)
- Teething lowers your threshold for seizures
- He seems to be getting a cold/allergies OR
- The DAMN things just decided to rear their ugly heads again and scare the crap out of us! Reminding us that Daniel will never be safe from this horrible "monster".
Also since our last post....because Daniel will be getting the EEG with all the electrodes cemented to his head again in the very near future we had to cut his hair. So here is a post of what he looked like before and after. WOW! Just remember it grows back quickly, and you woudn't want to have to try to get all that cement out of those curls!