Send Positive Vibes

My nephew Emerson has been having seizures. While it's fairly common for children with Trisomy 13 and 18 to have them the medicine he was on didn't seem to help them. He was on the highest dose. If the switched his brand of med then a side effect happens - it would lower his bone density. His bones are already not very strong. I don't think medical marijuana is legal yet in Nebraska.

They haven't figured out what to do.

This weekend he has 20 or so seizures. :(

I watched a few. He basically pauses for a bit. Then gets really happy when it's over. I would think a seizure would make someone completely wore out. I was so clueless about seizures I had to go look up information on them.

On Monday he got a EEG. It was so bad they admitted him into the hospital right away.

Evan, his oldest brother is in 7th grade, but they still don't like the idea of their kids being left home alone after dark. My oldest sister Angie went over there last night, and I'm going over tonight. My parents helped get their youngest Edison to and from preschool.

I do hope they come up with a plan for Emerson. It sucks having him in the hospital. He can pick up other illnesses there, he misses his brothers, and the rest of the family pitches in a lot.

Emerson and Edison on a Go-cart at the Pumpkin Patch:

We have a car in the shop from the hail damage. We only have a rental car for 3 days. That car they may total out. You know that saying, "When it rains, it pours."? I'm beginning to think it's never going to stop pouring.

Is it "pouring" where you live?

Surgery Was a Success

My nephew Emerson that has Trisomy 18 has been battling breathing problems, since the fall. He's been in and out of the hospital 3 times I think - I kind of lost track. My sister kept telling the hospital that she thought possibly some of the problems were from a hernia that he's had, since birth.

The doctors kept pushing that thought away. They noticed he was having quite a few seizures happening. Instead of looking more into his hernia, they focused on his seizures.

At that point he was in pain, upset, doing this strange breathing thing, tired and not himself. Only 1/2 of those symptoms were from his new seizure meds.

Prior to this fall he was a happy little guy!

After this last MRI they found out that his hernia was pushing his colon up and down. It was moving its way up into his chest cavity.

Yesterday he was prepped for surgery:

Little Emerson keeps loosing teeth. That front one is loose right now. His glasses are tinted to help with his seizures. I stole this photo from my sister.

He had a hearing test, while he was out. His hearing keeps getting progressively worse. They are looking into Trisomy 18 kids to see if hearing loss is common. 

His seizures are the same. He's always had some. Hopefully they don't get worse.

His surgery on his hernia was a success. I hope he starts being more his smily self.