I dont know where to start...

Everything is so scrambled in my head right now. Way way to much info...in such a short amount of time.


The easy part (mentally)... is that Jacob's button size got changed. He went from a 14F 1.5cm that he's had since he was 2 months old. To a 14F 1.7cm. They did have to cauterize his site and it took Frank, Hillary & I to hold him down while Beth G. Measured his stoma and cauterized it. He was so traumatized he fell asleep in his umbrella stroller (uncomfy for sure!) right after. Well that was the END of the apts...the very last thing we did...so now for all the other stuff.


They have Jacob's
-----Height at 35 1/2"... (60%), though we know hes taller...he always shrinks a couple inches on CHOP's measuring boards! Tortcher devices for sure!
-----Weight at 26lb 14oz (50%)!! WOW that's pretty accurate...about 2oz gain since last week. They are very happy with his weight!
-----Head Circ. 18 1/2" Under <5%. Still not happy with it...but has improved over last apt.

There are no adjustments to his meds there. Though we are going to try the Trimicacone (sp) cream for his stoma to try to help the granulation. They are happy with his hydration and his current feeding regimin.

He's tested at a 6 MONTH old for speech. I guess in itself that's not shocking. He doesn't talk. But they also said his eye contact is very poor, and his pointing is almost non-existant.

His Cognitive is evaluated at 18 Months. He's not doing tooo bad with gross motor, but is in need of some sort of orthotic. We'll find out later what is reccomended. John Izak (Orthologic's in Philly) is going to come out to evaluate him.

The toe walking she believes is sensory. And agrees that a weighted or deep pressure vest could be good for him. While we were there he JUMPED! First time every...got his feet off the ground...JUMPED! She see's no tight muscles in him, but did comment on how weak and lax all his muscles & Ligaments are. Again....with no known reason.

They are keeping him at a DX or GLOBAL delay. And Severe Speech Delay.

We go back in 6 months for more extensive testing. They think he may fall into the Autistic Spectrum.

Overall i'm not doing terrible. Like I said before...he's Jacob, and will always be JACOB! No matter what DX or test or script there is. I just wish I knew what his future held, and what we could do to help him more.

Theres more i'm sure.....i'll try to sort though more later.