Jaxon had his monthly Feeding clinic and GI clinic follow-ups yesterday (always a long day). Let's start off with his feeding clinic update:
The specialist is over the moon about Jaxon and his smile :) She observed me working with Jax and doing our spoon/water routine together. Everything went well and Jax loves his spoon. Our next step will be taking actual step 1 baby applesauce and mixing just a bit into water to change the texture. I have to stick to a taste he's used to and just work on texture for the next 6 weeks. We put a dab of actual sauce on his lips to lick and it made him sick. So we are going to go very slow with continuing the water/juice drops and upping the texture. I will work with him 2-3x/day for no more than 5 mins when he's in the high chair at the same time as Brady. So nothing too much new there, and it's a slow progression, but at least it is moving forward.
Doc is extremely happy with Jaxon. He walked into the room with a student doctor and said his classic line, "Hey it's my buddy Action-Jaxon!" which always makes Jax smile and now clap in excitement. The doctor turned to the student and said, "see...I told you". I asked what he was talking about and he said that Jax is one of those patients who's smile and happiness camouflages how sick he is. I don't know why, but that made me feel sad.
Anyway, we reviewed everything and the doctor is very pleased that he sleeps pretty good at night. I could tell the doc is trying to figure out what one thing or mix of things are keeping him doing so well at the moment. He loves that he's not on any motility drugs and most everything we do is natural (chiropractor, acupuncture, probiotics). But does think the antibiotic round certainly was needed and helped. We can't deny he didn't improve after it, but we'd like to find another route for him so he's not on a harsh antibiotic every 2 months. I didn't tell him about the holistic medical facility yet since I'm waiting for that doctor's actual recommendation. But I did tell him about the probiotic and he's cool with that.
We started to get into a discussion about still searching for a reason for this senseless disease, and the doc said the Mitochondrial Disease results came back normal, but he still felt that Jax may have a high functioning version of it. He said he's done a lot of research in that field, and thinks Jax has a high chance of having it. I found this part so interesting...his suggestion was natural supplements! He gave me a list of three supplements to research and take if my "mom-instinct" says to go for it.
He said that he's not trained in natural supplements nor can he "prescribe" them, but he thinks they do work for some people. He said that we should exhaust any and all possibilities that can pose no harm. How great! Clearly he won't be offended when I contact him with the holistic facilities suggestions.
Jaxon had blood work drawn to test his thyroid and check his VIP levels. I think we'll get the thyroid levels back soon, but the VIP has to be sent out for special testing. I told the lab tech to have one come back positive (because it's curable and that would be the best news ever) and to make one negative. She smiled and said I know exactly which one you want for both, and I'll put my prayer in...how sweet was that? The doctor told me that there's a very low chance for either of these tests to be positive, but since Jax likes to beat odds, he's willing to check "just in case". Clearly the thyroid test is the treatable issue and the VIP is not since that would mean pancreatic cancer. The doc said that while both of these things can cause CIPO, the thyroid was checked at birth, and VIP usually has non-stop diarrhea, and both are rare on top of this already rare disease he has, but why leave stones unturned right?
So to wrap this up, we are going to slowly turn up Jaxon's pump rate (1ml/hr every 3 days) to find his threshold of what he can handle. The higher the pump rate of food going in, the longer he can take breaks off it in the middle of the day. I turned it up last night to 33mls/hr and I'm hoping to get to 37mls/hr so he can have 4 full hours off the pump at some point. That would be heaven! The doctor is also researching GJ Mickey buttons that would work for his next tube-change. I pray we can find a "button" that will work for him. Oh, and Jaxon's weight was just over 19lbs, so he's gaining fine which is always the biggest concern now to make sure his intestines are functioning.
And I don't want to leave Brady out - he is of course pulling his body all over our floors! I'm trying to get him up on his knees and he seems interested in pulling up on things, but still not close to even really attempting it. But I really can't turn my back for a second anymore since he can get across the room in a blink!
The boys practicing for their 1 year photos coming up this weekend.