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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, October 10, 2013

Getting Back on Track

We've been having a pretty rough time here lately with food trials.
We pulled carrots, squash, koolaid, and dumdums, along with adding a second dose of steroid, all to try to combat the flare.
It took a while for John to stop throwing up and we were getting concerned that we were going to have to pull peaches and/or green beans (all he's been wanting to eat lately). 
Now that things have calmed down Doug and I are looking into what our options are for trials from this point forward. We've exhausted Beech Nut's foods which is pretty much all the foods that can be pureed smoothly. At this point we're going to have to start looking for foods that I can make and John can either eat alone or can be added to one of his safe foods. 
He asked for carrots today and ate an entire jar. So far he's kept it down so I guess we are trialing carrots again. The whole time he was eating them he was saying "yuuuuummmy carrots!"
I guess he's decided he likes them after all.

John is working really hard in speech/feeding therapy to get past his aversion to textures. This is a big step we need to make in order to proceed with food trials. 
John's feeding therapist is a miracle worker. She's made more progress in two weeks than all of John's therapists in the past have done in a year. We are very hopeful that John will make some amazing progress with her. I only wish we'd found her before now.
It's getting to be more crucial as well since John has decided he'd rather eat food than drink his formula. It's a bittersweet thing that he's making this transition now because he physically can't eat enough of his four safe foods in pureed form to sustain him without continuing to drink the formula. He needs this formula to continue to thrive and gain weight. 
So, once again, we are at a point where John has to make significant strides in therapy and start eating age appropriate textures in order to make up for the formula he's not drinking now.

"warming up" with shaving cream before feeding therapy.

John has also been doing well in physical therapy. His therapist says that John has very low tone in his legs and she's worried about the strength in his ankles. Because of these things she thinks it would be best for John to start wearing braces. They are very small and no one will even know he's wearing them because they go down inside his shoes. These braces will just give him a little extra support while he works on building his strength in therapy. 

So our main goals right now are his therapies. We will focus a little bit less on trials so that John doesn't get too overwhelmed. Food trials are stressful on his body and all of our emotions. Therapies are the same way. he has a hard time handling both at the same time. Since John is seeming to be more interested in eating real food right now we are going to push more in getting him to eat these foods in age appropriate textures and less on getting him to try new foods in pureed forms. 
Needless to say, food trials will go MUCH easier when he's eating finger foods.