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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Thursday, February 21, 2013

There's a Party in My (Son's) Tummy!!

Things seem to be going well with the steroids minus the bumps in the road dealing with finding a suitable delivery method. The standard is Stevia or Splenda mixed with the Pulmicort but after doing some research I wasn't feeling okay with giving my son that much (8-10 packets a day!!) artificial sweetener that is so new that no one knows what the long term effects might be. So then we tried honey. The Pulmicort just needs to be syrup-y enough to coat his esophagus. He didn't really like the honey too much and he also started coughing and gagging a lot while using the honey so we decided to try Pectin after Dr L suggested it.
Pectin is used in canning to make jellies. It's not my most ideal solution but we are pretty limited. I'm trying to pick the lesser of two many evils here.
John get's the Pulmicort mixed with pectin twice a day. He can't eat or drink after for a while so I give it to him before nap and before bed. That way he's not being told he can't eat afterwards. He sleeps long enough most afternoons that by the time he wakes up he can eat with out worrying about washing away the medicine.

He is back to eating sweet potatoes like he never missed them! Boy does he love his "tay-toes"  We've also been trialing Bananas for 5 days now. He doesn't enjoy them yet but I didn't think he would ever willingly sweet potatoes, so I know better than to give up on them yet. Just like with the sweet potaotes, I'm putting the bananas in his bottle for now and if he doesnt have any reactions to them in 10 days (5 more from today) then we will work harder on getting him to actually eat them and enjoy eating them. 
Right now I think the biggest issue is that he expects sweet potatoes every time a spoon is presented and then he get's a mouthful of bananas and it's quite a shock.
We have been advised to introduce a new food every 10-14 days.
We are having a hard time picking the next food!!
John has a scope scheduled for early April to make sure the steroid is working. Anything under 20 eos and we will be happy!

feeding himself for the first time!!

On Tuesday of this week we were seen at the Marcus Autism Center. 
They did a feeding and oral motor evaluation on John which consisted of watching me feed him though a one way mirror and a therapist working with him to test his oral function. 
We were told his aversion is mild to moderate which is better than what we thought. Everything works like it should, he just lacks experience and exposure.
Due to this they think he would benefit from their day program.
It's 7 weeks of intensive feeding therapy. 8-5 Monday through Friday.
This means that John and I, starting in April, will be living in Atlanta. They will basically be teaching John how to eat. How to chew, how to sort food in his mouth, how to use his tongue to move food around. They will also be teaching me how to work with him at home as we add new foods and textures. 
To say I'm nervous and scared would be the understatement of the millennium!!
Please be thinking about us during this time. It's going to be challenging to for me and for John. It will be exhausting, intense, stressful, and new for both of us! Stretching us both way out of our comfort zones. 

Until then I'll be spending my time trying to get as many new foods on John's safe list as I can, rearranging appointments, making living arrangements, but most importantly spending time with Doug and my friends here in Augusta. 

Thanks for reading!

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