Eat Happy!

Eat Happy!

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Thursday, December 12, 2013

December 2013 CHOP Updates:

Last Friday, we visited the GI department and Diagnostics. Today we visited the Endocrinologist...

They were all extremely pleased with Ian's progress! He has grown over 2 inches in the last 6 months and is now over 31 pounds. That puts him in the 50% for weight and the 18% for height....... almost on his own genetic-potential curve. his growth velocity (rate of ascension on the growth curve) is phenomenal. They sad Ian's growth is a classic case of what happens when a child can stay healthy enough to pump in loads of "real-food" calories!

In the spring, we will be repeating a gastric-emptying-scan. The GI is hoping that as he has progressed and developed, that his emptying will have done the same........ and improving. I'm hoping we can get him to eat more of the egg-toast meal by then..... feeling optimistic!

They only increased one med based on his weight gain. In the spring, after the scan, the GI doctor is hoping to begin weaning off some medications. That will take some time, but will be yet another step to removing the G-tube. Right now, we are continuing to move toward giving all meds and fluids by mouth. All of his food has been by mouth since May. We are now trying to give his overnight meds by mouth. There is not a way to move these meds. They are time based and need to be spread out as so. We have been giving them via G-tube when we take him to the potty every night, so we are trying to squeeze them in by mouth now at those times. Thankfully, they are only 5mLs each.

In addition, Ian takes all his daytime meds by mouth....... and I mean *he* takes them. He holds the syringe and pushes it into his mouth all by himself!

For the most part, this would only leave us with using the G-tube for venting/burping/releasing air. We do this at least once a day. This will be just as hard to "give up" since it is needed for anatomical reasons. The fundoplication reflux wrap makes it purposefully difficulty to get things up from the stomach.

Ian's visceral hyperalgesia with his bowels is very well managed. He has been able to move away from the Miralax completely. We have also been able to wean down from the flax seed oil and are only using a food product called Fruit-Eze. It is natural and we can mix it in his applesauce.

We did another growth hormone factor blood draw at the Endocrinologist today. This is routine to make sure we are giving just the right amount of growth hormone injection. The values will show if he is getting too much, or if he needs more. We also did a bone age x-ray today (an image if his hand). Doctors can tell how old a child is by the bones/growth plates in their hands. Last November, Ian's was measuring several months behind. He suspects that this one will be much closer to normal for his age.

The Endocrinologist did tell us that in 6-12 months, if he continues to do well, we can do a 6 month trial without the growth hormone. He told us that with Ian's Small for gestational age and Intrauterine growth restriction diagnoses, growth hormone can easily be indicated through puberty. However, with Ian's GI/feeding/nutritional progress, that could be enough to do the job.

We are also going to continue doing the stress dosing steroids when he is sick. There has been concern it is being used too much, but after reviewing the usage details, it was decided that we are doing it correctly.... it is just unfortunately that Ian is at the age where little kids share everything! Vomiting with almost *any* illness/cold/virus puts him at a huge disadvantage too. Vomiting is very taxing on the body and Ian needs the extra help.

The plan is to continue inching forward as we can..... sometimes big steps, and sometimes small ones.

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