It’s been a while but I haven’t had my ‘normal reminders’ chirping at me about updating! It’s just been recently that things have been moving with some changes so it’s probably a good time to write and catch up now. Yesterday we went to the Marcus Institute in Atlanta. They specialize in all sorts of stuff but we saw the group that focuses on autistic feeding therapy. This place was well put together because we didn’t sit in a waiting room 5 minutes out of the 2+ hours we were there. We spent a lot of time in front of 4 different ladies who all specialized in different areas like nutrition, physical function, psychology, and something else I don’t recall at the moment. We answered a ton of questions and they did all sorts of looking and measuring and messing with Harper to see what they had to work with. They even watched us try to feed her something. Right now they feel it’s best to NOT feed her anything, for safety. They gave us several things to do with her at home to work on her mouth area and getting her less averse to anything being in or around her mouth. For now we will go down every two weeks to get progress updates and any new instructions. At some point down the road if she improves enough we may possibly get into the program that’s 8 weeks long with sessions several times a day. Now, this is a total nightmare considering it’s in Atlanta and it’s 8 solid weeks for two parents that work and have a houseful of other kids. We will just wait and see if it ever gets to that stage before trying to figure all of that out. From what we understand there could be a point when Harp could take some food by mouth, soft foods, but would never totally be able to eat without the tube. Looks like she’s a tuber for life.
We also talked to the nutrition lady a bit about blended diets and the formula we use. She agreed with what the gastro Dr. had said about the protein content of the formula we use. She walked us through how to better plan a balance between blended foods and the formula to come out with a balance that would work for Harper. We see a new gastro Dr. later this month and will hopefully be able to go further with creating a new meal path for her. I feel better having a better understanding now on how to focus and balance her nutrition now.
We still haven’t heard back from Katie Beckett. We’ve called a few times and it’s still in process. It’s been a month since the updated info was sent in so who knows at this point. I think their 8 ball is broken.
Some things of concern:
-Harps been throwing up a good bit lately. She’s been mostly on formula only so we don’t know what’s happening. It happens in the car, which is a terrible mess to clean out of everything. It happens at home laying in the floor, which covers her own face completely and causes her to panic. It happens sitting up in her chair. It’s just random. It does NOT happen when she’s asleep, thankfully. I think she gets worked up and it causes the problem to get worse which leads to the throwing up. If you see her start to make that face you can talk her out of it. I’ve noticed her stomach being way full and hard and will vent the air out only to have it the same way a few minutes later. This is hours after feeding when she should be mostly empty.
-Her plug isn’t staying in. The balloon seems to be losing water lately and she’s pulled it out twice. While it’s not a full balloon when it comes out it still hurts going through that hole. It’s also not fun to put it back in because she tenses her stomach which closes the hole and makes it really hard to get in.
-I’m having problems with my right arm. I know it’s silly to complain about, but I think it may be tennis elbow or something. It’s mostly just annoying, but it hurts when I pick up Jeremiah or anything else heavy and I wake up several times a night with it aching. There’s not much that can be done other than rest it to heal, which I’ve been doing for several weeks, but it isn’t like I can stop picking up the kids or whatever else.