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Wednesday, December 31, 2008

10 days and counting

Fun fun fun we are at day 10. This gluten free is alot harder than cassein free. I have not been able to get Jordan to eat anything. He is craving sugar now so I assume we probably have a yeast problem also. He will only drink orange juice. I know not the best but I am able to put a scoop of tru-fiber from master supplements (great product) and 250 mg of carnitine in it. I need to get him on a good calcium and a b. He is getting his multi from hero nutritionals the gummy bears not the best but he does ask for them. I put in an order from Kirkman labs. I love that they have trial size of most major supplements I am going to try all flavors of super-nu-thera and see which one he will take.

Today he must have been craving gluten because that was all he wanted. He begged me for waffles and I made them using bob's all purpose mix the minute he smells them he literally gags. This is the 5th time I have tried I guess it is on to a different mix maybe it was the garfava flour that was to much. Everyone else in the house ate it. Poor Jeffrey he thought I was going to sneak him different food and lucky boy is also gluten free. The kiddos in my care are also gluten free and I see a difference in them. the baby is so happy. I have a feeling both girls are Celiacs but their mom just has them on acid reflux medicine. I don't believe any baby should have to be on reflux medicine at 6 weeks old. The older one is still on it and she is 3. Something else that a Dr. missed but us parents just say oh well they know best.

Todays lunch consisted of gf hotdogs and a banana and veggie chips. Jordan was the only one that got a bun but a 4-pack cost $5.99. Me and Jeffrey had out mouths hanging open from shock but Jordan ate the whole thing. This was a tapioca rice bun. Either he was really hungry or he is starting to give in.

new favorite snack; air popped popcorn sprinkled with nutritional yeast. Taste like cheese without the cheese.
oh yeah the bathroom is all figured out he goes now with no problem he just doesn't like to wipe his own butt. I am not complaining I am doing a happy jig. Jeffrey asked me tonight that since Jordan is finally going would I please quit praising him on his beautiful poop. I guess maybe it was taking over my life.
Happy New Year it should be a healthier one

Chicago here we come

Mom and I took the boys in to Chicago to do the holiday thing. Now remember at this point we are only CF. We went on Saturday because Sunday was going to be really cold. We made the mistake of taking the Ohio exit to go downtown because that goes right past some cool looking restaurants including the rainforest cafe with a huge frog on the roof. Any guesses where Jordan wanted to go. Of course Jordan is a broken record so I had to keep distracting him and a little bribing to keep him on task. We went down to Macy's the old Marshall Fields. They still had the windows and the big tree but they were not as good. It was especially noticable when we went in and the decorations weren't there. You used to walk in and feel that you were in an exclusive store.

We mailed a letter to Santa.
The highlight of the store was the escalators we did 8 floors and the boys thought that was the best ever. The boys took their picture in front of the big tree and then we went back down the escalator.
We stopped on the toy floor to use the bathroom. Jeffrey has a thing about horses and thought the stuffed one was really cool.
Any guesses where we went next. Surprise we went to the frog restaurant. I have to agree it is pretty cool. On the best days Jordan is already hard to feed. Now I have to find something no dairy. They have chicken tenders shaped like animals. I really didn't think he would eat them because they were not the correct shape so I got him a banana also. He surprised us all and said they were yummy. I guess if he gets hungry he will try it. Jeffrey of course had shrimp. Mom practically had her mouth hanging open she was so surprised.
We hopped in a cab for one last surprise. We took they to Navy pier and the children's museum. I love that place.

All in all we had a fun day. Of course the ride home was a nightmare it was double of what it should be. It got really windy and with all the snow already on the ground we had major whiteouts. FUN FUN FUN!

Sunday, December 14, 2008

Family christmas party

What an interesting day! The boys and grandma went to have breakfast with the Grinch. They served green scrambled eggs and ham and donuts. Jordan was so excited he even let them put some eggs on his plate. He sniffed it and tongue tip licked it and then decided it had to go. Grandma removed it from his plate but he did eat some ham not much but enough to consider it a new food for him. Jeffrey of course decided he wasn't going to try anything. Sometimes I wonder which one of my kids have food issues. I can't wait until we get all the crap out of the house the boys are gonna starve for a few days and then maybe they will start to eat healthy.

We drove to my brothers house 2 hours away with grandma and grandpa. I am not sure why but grandpa thought it would be a good idea to have a limburger sandwich before we left. Jordan walked into the house and said eww what is that smell? He smelled grandpa's breath and made him go brush his teeth after telling him that he was in so much trouble. Well you can see where this is going major gassy car ride. You have to remember Jordan has extra sensitive taste and smell sensories. Yup it was a long car ride.

When we get to my brothers the first thing Jordan asks for is some milk. They tell him we are out and he says OK. I brought along a can of Menudo in case he wouldn't eat anything else. I know this is a weird food for a sensory child. He loves this and luckily it is GFCFSF unfortunately is it $3.50 a can. When mom and dad go away for the winter I am going to make a big batch in their house. That way their house will smell not mine. He did eat some jello which I haven't taken away yet but I will. I have found that agar powder in juice will make a jello like dish I am going to try that but at $34.00 I think I will wait a bit on that.

I stocked up on yummy earth lollypops and drops to send to school because for some reason they want to keep giving him treats. I understand that speech teachers like the suckers because it get the mouth ready but come on the kids don't need any more crap.

Oh yeah if you were wondering about the party it went really well. I did notice that Jordan played better with his cousins. Usually when we go there he just finds a toy and plays with that and other than chasing them around he plays alone. This time he really did interact. He got the game for his gameboy that he really wanted so he is happy and doesn't need anything else for christmas. Unfortunately we left his blanket behind. Mark is going to bring it christmas eve but I am not sure we can wait. He did OK without it but it is a heavy blanket and gives him extra sensory input while he sleeps. I already gave a way my xray blanket that I got from the dentist so I need to find something else heavy but soft. I might be making a large rice filled blanket today.
bk: eggs, ham, donut(not gf) and juice
lunch and dinner: Menudo, juice, jello

Friday, December 12, 2008

School calls I come a running

I get a call today at 3 Jordan had an accident and they don't have anything to clean him up. I have mom come over and watch the babies and rush to the school expecting a foul smelling mess. I get there and he has nothing in his underwear and only a little in his butt. Needless to say I am a little annoyed he has his own aid why couldn't she do it. The principal was gone and no nurse so the secretary said they weren't allowed to touch the kids. Give me a break. Yesterday the aid asked me if it was ok if Jordan leaned on her at the end of the day because he is just to tired to sit up. I hate that our world has come to this.

I talked to his aid about the field trip. I walked into school and just trapped her. It was about time we met. I asked about his lunch and the hot chocolate. She was on top of it. I feel so much better about her I really like his aid and his special teachers I am not so sure about his regular teacher. His mainstream teacher is very nice but she is a bit of an airhead.

I catered to Jordan's craving for pizza tonight. I used regular crust and galaxy rice cheese and pepperoni. He happily ate it. Next time I make pizza I am making a GF crust.

brk: cold cereal not GF, rice milk, and juice
lunch: bologna sandwich with smart balance lite spread, an apple, and juice
snack: raisins
Dinner: pepperoni pizza with rice cheese and juice

I know I know to much juice I am working on this also.

Wednesday, December 10, 2008

So long to glorious poop

Sorry to say it took almost a week before he would poop again but he sure managed yesterday. Luckily we were snowed in so the kids were home from school. The consistency was very soft. I haven't seen one like that in years. I have no idea how to get him to go. He believes that he is supposed to keep it in. He keep apologizing for not keeping it in.

Today at school they went on a field trip to a tree farm. It was a very cold day but the sun was shining and he said he had fun. He said the dog that was there ate his lunch. I am upset because he has an aid. Where was this aid? To top it off they offered all the kids hot chocolate. Luckily he declined but come on last I checked hot chocolate has some kind of dairy in it. He has a Dr note that says he is not to have dairy. I swear the school is so uninformed and no matter how many times I try they just don't want to meet with me.

Wednesday, December 3, 2008

Poop wonderful glorious poop

He did it by himself on the toilet without me telling him to go and no skid marks in his underwear. (sorry long run on sentence) Very excited I have been waiting 6 1/2 years for this. He was actually giggling on the toilet because it didn't hurt. If this is what dairy free is I like it.

It's Snowing

Yippee we love snow here! It is so fun. Luckily I invested in a snowblower last year.

I actually tricked Jordan into having some rice milk on his cereal this morning. He didn't eat much but he didn't spit it out either. I guess that is progress. He was so funny. He wants to know when I would have enough money so that we could buy some milk. We are all telling him that we can't afford milk. He saw grandma with some money and begged her to please buy him some milk. Believe it or not he seems to be taking it well.

Perception is everything though. Jeffrey had cereal that he wouldn't eat because he thought I poured coffee creamer on it. It just happens to be the place I am hiding the milk. Once he figured that out he ate it just fine.

The nurse called today with Jordan's labs of course the lab didn't do all the tests so they need me to come back in. This is not the first time they did it wrong. I usually just forget about doing them but luckily this time it was an urine test. I just have to figure out how to get him to walk into the lab. I think I will try the hospital instead of the clinic.

Monday, December 1, 2008

Doctors, bandaids, oh my

Day 4 of no dairy. It may be wishful thinking but he is sleeping better. I slept a whole night, well almost my older son woke with a sore ear.

Jordan had his appointment with the allergist today of course Jeffrey decided he was sick and needed to see a Doc. I really liked the allergist he never told me I was stupid or wasting my money looking into biomedical treatments for my son's autism. I think I got the tests that I needed of course after he gave me the lab sheet I reviewed and made him add casein and gluten to the posibilities. It was kinda like my duh moment but I realized something I am strong enough to demand what I want. The Peds had already gone home and since Jeffrey cried through the entire appointment the allergist looked in his ear and said it did look angry in there. He didn't give me anything which is fine since I wouldn't fill it anyway. I am using good old fashion garlic oil drops. The kids hate it but I don't care it works.

Next comes the oh my part. Labs for Jordan. I have been through this before fun, fun, fun. I used to cry my way through them. They tried sitting him in a chair first not a good idea. Then it was on the table with me and 2 nurses, not good. Next we had 3 nurses and me laying on him such fun. He was squirming so much and so upset that he gave himself a bloody nose and screamed really loud but my favorite part is what he said. "I don't like you and the pins, you not nice." I know torturing your child is bad but I was so proud that as upset as he was he was telling me exactly what he thought.

Believe it or not homework was done relatively quickly tonight he had to write 6 words and only dropped his pencil 4 times on the floor.

Every night I get to hear from my broken record son I want a rattouille game.