Feeding Clinic

This is another post I've been putting off. But it does bring up some important issues and someone may be interested so I'm writing this. This is not a Rah Rah post, so if you want that please skip this one. This is also very long. With that, here goes...

The appointment was on Dec. 23rd early morning. Just what I want to do on a day in the middle of Christmas vacation, get up at 6 am and go out into the cold to go to a hospital for a dr. appointment. The senior therapist from the ABA organization also attended this appointment. I made up 2 straw cups of CIB for this appointment, but of course forgot to pick them up and bring them with. There was very little wait this time. Eric did AWESOME with standing on the scale to get his weight. The height, that's another story. They have this thing that comes down on the child's head and he HATES that. Not that I blame him, but they are careful bud. This time they insisted on getting it so they would have to do it in the room by standing him at the wall, making a mark and using a tape measure. We get settled in a room, and the nurse comes in soon after. She asks the usual questions. I bring up my concerns about how much he is drinking, and urinating and the fact that his urine is very dark and smells like sugar. I don't want to be paranoid, but his dad is a type 1 diabetic, so it's a possible concern. Nurse is concerned, along with the dietician. He gained 2 lbs since the summer, but they were not happy with that. His weight is not keeping up with his height, and for how much he is consuming they would like him to be gaining more. They try to get a hold of the GI doctor that was there today so labs can be ordered. Gee, that's something to look forward to!

The psychologist comes in and is filled in on all the medical and nutritional information. Then she talks to me about how he's been doing with the cups, spoons ect. I tell her how I get to a point and no progress is made, and how he don't drink enough from the straw cup to keep properly hydrated and healthy. Then she asked the senior therapist what she was doing, and how she thought he was progressing. Then she asked how long that the therapy organization would be working with him, we told her 3 years. Then she asked the senior if any long range planning has been discussed for Eric. Huh? She then informed us that Eric most likely won't be able to function on his own as an adult, and the bigger he gets, the harder it's going to be to handle him. Then asked if we ever talked about or looked into a residential placement for him. Ummmm...OK. That was the LAST thing I was expecting to be brought up for discussion. Nice thing to talk about right before Christmas! Now I understand that Eric may not be able to live independently as an adult, and that he may need a lot of help. I'm ready if he has to live with me as long as I'm around, or that a residential facility may be necessary in time. The services in this state are great, but I have no idea what's going to happen once they turn 18. I'm not in denial, and know that in time these things may need to be addressed. But to bring it up like this? Eric has made great improvements since starting the in home ABA therapy. Nobody knows what the future will hold. He may get to a point where he may need minimal help, or that I can care for him as long as needed. Right; now I'm his mom, I am caring for him and he is thriving. Yes, it's slow progress but he's much better off than he was before. The senior said this stuff was discussed during year 3 of the intensive phase therapy (at the end). God this conversation upset me. It came across like I can't take proper care of him. This is not a subject to be taken lightly, just not something I wanted to deal with right at that time.

On to the lab. The senior therapist was staying with me and Eric through all of this, which was very nice of her and very appreciated. We had to get both blood and a urine sample from him. By this time we tried a bag, but he fought that so hard and would not let us put it on. Then we sat in the bathroom for about 15 min trying to see if he would go in a cup, didn't happen. So we got a hat, cup and order to try to do this at home. Anyhow, we sign in. The therapist forgot something at the GI clinic, so she had to go back there. Of course while she was gone we were called back for the blood draw. There was one lady there and she asked if it would be easiest if I held him in the chair or if he laid on a table. I said in my lap. Eric plopped down on the ground and dead weighted himself. He wasn't moving. The lab worker called in 2 other people. They were able to lift him on to me and told me to hug him hard and make sure his chest didn't move. There was another person holding his head and other arm, one was holding his legs. Yes, I thought this was a bit rough and exstreame, especially when they picked him up. Yes, this had to be done, but this was very hard to witness my child go through this, and to have to assist in it. They took 6 tubes of blood, lots of tests. You would think they would just tape some gauze on the spot or put on a bandaid after, of course not. This is what they used.

He would not let me anywhere near that for days. I was risking injury if I did. I didn't want to use a scissors because he moves and fights so much, and the location. This was the result.

It was way too tight on him and he may have had a reaction to it. Thankfully this is healing well now.

We are still waiting on results of the tests, they told us 2 weeks for everything comes back unless something is seriously wrong. No news is good news I say. But I keep praying. The urine sample, we're still working on that. He won't sit on the toilet with the hat on it. If I can get some time I'll go in with the cup and try to catch him. We have now regressed to peeing and pooping on the floor, and it's a struggle to get him to even sit on the toilet now. Maybe this will happen, some day.

The appointment was at 8:30 am, we got home a little before noon. I left my keys at the GI clinic and realized it when we were in the parking structure. Having to go back in and to the lab, pharmacy and GI clinic to get my keys did not make Eric happy. Don't blame him, the poor kid already went through enough. This was not an enjoyable experience. If you read all the way through this, God bless you. I'll post some more fun and upbeat posts on here tonight if I get time, or tomorrow for sure.