August 30th we went to Primary Children's for Cole's apt. We got the blood work done to see if he can move up to a 4:1 Ratio. After a long day of....his blood work was lost (so we would have to go all the way back up to Primary's to get it re-taken...which is a lot for us, because both Adam and I are on opposite scheduals for work and school...which means that I would have to take work off again to go up and it takes about 4 hours out of our day to go up there (drive time, find a resturant while up there so we can warm cole's meal up etc., plan it around cole's naps) Anyways, we also had lost paper work and issues with everything.
They ended up finding his blood work...and he was low in carnitine, vitamin D & his tryglicerides were high...so he needs more fish oil. Here is his protocal for vitamins:
3 drops Vitamin D
5 ml Fish oil
8 ml Carnitor
1/8 of Lite Salt
1/4 of Salt
2 scoops of Nano VM-
worst stuff ever! Cole hates it, we mix small amounts into his food because it is so calky and gross. Try getting that into a 2 year old!
They approved him to move up...this is the last time he can move up in ratio. If moving his ratio up dosn't work, then we will think about add in meds (which is not a fun thing with Drop Seizures)or the Vegal Nerve Stimulator which is a battery pack surgically implanted into his chest w/ wires that run to the nerves.
We are going to wait to add anything new until we get results back from Genetic Testing. We have an apt with the Geneticist next month.
We like to stop at the bakery after we get done at the hospital. We need SWEET's to make us feel better. This is what happens when we are sad...A HUGE PLATE OF COOKIES AND SOME CHOCOLATE CAKE!
Cole was so out of it...I think it must have been a mixture of getting his blood taken & sleep deprived. He kept falling asleep...but every time his eye's would close he would laugh so hard (with out taking his thumb out). He did it for a LONG time!