7/30/09

Yeah, urine test was a success, went off without a hitch, except for the little guy didn't go pee pee all night so Steve had to wait around for him to go potty in the morning. Which means yesterday we started him back on his supplements. Who knew that melatonin made such a difference for him! He was tired by 8 and went to bad, back to normal. We also started the b12 shots again last night, dosage is a bit different. He gets 10 ml every 3 days now instead of 5 ml every 2 days, I'm not so hot with math but I think that means its about a 25% increase. There are risks of insominia with B12 shots so we are hoping that doesn't happen.. last night went fine. we started him on the other new supplements too, lithium and magnesium to hope to help with his chewing and then fish oil, vitamin D, and TMG. So let me try to get it all right..

Ty's List of Supplements:
Spectrum Complete (new DAN Doc probably gonna change us to something else soon)
Calcium
vitamin c
vitamin E
B6
Digestive enzymes
probiotic
melatonin
Lithium
Vitamin D drops
Fish Oil
Magnesium
TMG
B12 injectinos
and soon to be Ferinsol (can't seem to find it in liquid form yet)

Mind you some of these things he gets multiple times a day so with his schedule of school and eating habits, we have to find a way to get these all into his system and if you add it to food, drink you gotta make sure he eats/drinks it all but it's a fine line cause if you don't put enough liquid in a cup to kind of dilute the taste of the icky m edicine, he won't drink it but if you put too much and he doesn't drink it all well then he's not getting what I need. You get teh point.. Woudl eb much easier if we could just give him teh pills to swallow... Also makes it tricky if you have Ben or someone distracting you as you are tryign to mix his medicine, someimes I lose my place as to what I've done arleady. Now I set everythign I need on teh counter and then put the bottle away as I use it so that if I'm interrupted I don't lose my place.

This also brings me to a reminder of the overwhelming cost of biomed therapy. Our costs with urine tests, doctors appts, shots, etc. this week alone were $500. So when you think we just talked about adding speech, music therapy and trying to get a studen to work with Ty after school, well it just can be overwhelming when you think about it all in a lump sum.. I try to look at it piece by piece... it's much more tolerable.. Oh that was only $100 no problem.. $80 per hour.. we can do that....$125 food bill....check.. it's just the whole picture that is tough so I just don't look at it that way, it helps :)

So.. Last night was our first weekly "Family Movie Night"... we are all home at normal hour on Wednesday nights so we decided ot make it family movie night. We rented a family movie (BEE MOVIE) and made a bed on the floor in the living room and had popcorn. We knew Ty would not be itnerested but we were just hoping that we could get him interested ing playing something while nearby us or to paricipate in parallel play sort of by watchign a video he likes on his dvd player. He was just getting to tired and overstimulated to participate.. after about 15 minutes of me getting up/down/up/down/up down/ to try to find a way to get Tyler happy but still have steve and I be able to hang out with Ben for movie night, Steve decided to take Ty upstairs, they cuddled for a bit and Ty went to Bed. We try to make things normal for Ben, we really do. And sometimes Ty just needs a break from everything so he can unwind and forcing him to participate would have just made it a nightmare for everyone... so all and all we still consider movie nght a success and hope that each week, it will get a little more familiar with Ty and hopefully we'll find a family move he likes at some poitn and hopefully we can all one day sit on the floor and eat our popcorn and watch together.. hopefully :)

So tomorrow is orientation at Splash Camp.. Ty and I are going together and then Steve is taking Ty back to daycare so I can go right to work after orientatino. I'm looking forward to it but of course also anxious. It's so hard to leave your child with complete strangers.. especially someone like Tyler where I always worry people won't notice something liek when his shoe was bothering him or.. I'm worried someone new at school was working with him yesterday because his lunch bag still had a full container of milk. We send a container of milk and then his sippy cup and they may ahve thought he draknk from the container which has a sor tof straw but it dosen't actually get milk out so it has to be poured..anyway, if he tried to drink like that he wouldnt' have gotten anything. it killed me to know he didnt' have anything to drink until he got to daycare at 12:30. we leave home at 8 on school days so he wont 4.5 hours without fluid. Anyway, those aer the things that make me nervous, he can't talk and doesn't always express his needs especially when it comes to food and drink. I know he'll be in good hands in fact we found out that our day care lady's daughter's friend (pause so you can get that all) will be one of the aides working with Tyler's group so that's kinda cool. Small world right!

There are all kinds of news articles about diets and supplements not actually helping autism.. this story has been misrepresented so if you hear of anything or have any questions, please don't hesitate to ask.

Think that's all for now.

P.S. We are winning the battle with Ben on food. he's been on a hunger strike all week and is starting to cave in. Miss Karen made him 1/4 hambuger, peas and something else for lunch yesterday and he refused to eat.. so at snack time when he said he was hungry she offerred him his lunch and he said he'd wait til he got home. I think he thinks that one of us would eventualyl give him what he wanted but we aren't. We are giving him very small amounts of food we know he likes and then food that we want him to try.. he has to eat the food we want him to try before we'll give him more of the food he likes. He's been pretty much fasting since Monday but we are seeing some changes today. Miss Karen and I talked this mroning about what foods I'ld like him to be eating for breakfast or at least try. I said protein! That kid needs protein. So todya she made turkey bacon and gave him half a slice and then also gave him 1/4 waffle (he usually eats 2 waffles) so he asked for more waffle adn she said you have to eat your bacon so he did..then he got more waffle. It's a circle. we need him to eat well so he has more normal bowel movements and his tummy doesn't hurt so then we can potty train him.. So.... we are making headway.