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This is a picture of Tyler in May right before his first 1 out of three hospitalizations in 2007.
He was healthy, although losing weight & the idiot pediatrician that we had seen since Tyler was born didn't show ANY signs of concern with weight loss.
I am talking about almost 1 pound per month until April when we took Tyler to Stanford for his Metabolic Dr. check up, they had their nutritionist come in & give us suggestions for additional caloric intake.
The G-Tube was not a consideration @ that point. Needless to say, when Tyler was hospitalized in May for non-stop seizures , shallow rapid Repirations; and upon arriving @ the ER no one had a clue why this was happening, we switched pediatricians , & started thinking that a G-tube may be a necessity . We were relieved to know of various options on how to place it, what types of "buttons" there were & most importantly, it is not permanent. He was hospitalized 2 weeks later w/o intubation & no seizures, just shallow rapid respiration. & severe lethargy. Labs drawn showed low kidney function, calcium & potassium. Thia was also the case 2 weeks prior. By the time the Dr.'s ordered his metabolic labs 3 all together all three came back fine. WTF! Of course they would he didn't get meds for 72 hours when they did the labs.
Plasma Amino acids norm, CSF norm, Sodium Benzoate levels norm. carnitine norm.
We suspected @ this time Sodium Benzoate toxicity & I had to fight some of the Dr.'s on why this should have been run the day we were admitted in June, but because I am not a Dr. they all thought I was crazy.
Okay, I am a virgin to posting, so everything is scattered around, it's an abstract glimpse of what really goes on in my head. HA! These absolutely darling pictures are in NO particular order.
Our son is hitting a mile stone soon, he'll be 2 Years Old in September, just a couple of days after his daddy's birthday.
We are starting fall off with a Gasteric Tube A.K.A PEG TUBE for Tyler, & it will allow him freedom with his adorable face & mommy of having to put a new tube down his throat, literally every few weeks. YEA!!!!!!!!!!!!
Things should be back to normal hopefully in a couple months or less.
We did get to do some swimming @ great grandmas, her pool is a lot cleaner than ours!
Camping in the mountains off of highway 50 for a few days, where we rowed our little boat around Loon Lake, Saw parts of the Short Tuttle meter shower while bats swooped over our heads during the nights & we were also graced with the presence of an immature bald eagle while rowing. Tried to fish a little, but no luck & did some off roading ( 4 wheel drive baby!)
Of course the Kermit dog came with us & served us with excellent security, especially for Tyler :-)
We also checked out the State Fair a couple of times. Tyler even rode a Roller Coaster!!!! WOOO HOOO!!!!
We've been trying as much water & out door activity before this surgery. It's been a blast.
Tyler is so adaptable to N E THING & just about everything.
Got a new Neurologist Dr. Sherr UCSF, seems very good so far. Everyone is usually under some degree of scrutiny, eh?
Til next time chow.
