Thursday, September 29, 2011
Last week Matt had re-evals for therapy. I noticed something odd in his speech therapy eval. Questions that he was being asked, basic questions like body parts and colors took him a long time to answer. Even though he has known the answers for years he had a very hard time retrieving this information. I have been watching him and it has continued. Today I downloads a pre-k Halloween pack for Matt and we sat down to do it.
He had a very hard time with it, in the "which one is different" he couldn't do it. I asked him the colors of the candy the first one was green he said "red", I said try again, he said another color, then he said "green". The next one was red I asked him what the color was he said, "green", then purple, then he said "red" which I said was right.
Since he has known these things for so long, it is so hard to see him struggle with them. It is very disheartening.
Wednesday, September 21, 2011
Matt isn't eating very much anymore. I have always said that Matt lives off of pediasure but right now if it wasn't for pediasure I don't think Matt would be alive. I used to be able to get away with giving him 1 to 3 cans of pediasure a day depending on what he ate and now it is pediasure 3 times everyday and sometimes I feel like 4 might be better.
He is still eating sweets for the most part but not all I give him of sweets. He will just leave candy and not even touch it. I gave him ice cream tonight about 1/2 of a cup, he left about half and didn't want any more. I called the doctor Tuesday, he said to keep a food journal which I started a few days ago and to come in to his office in a week and we will go over it. He said he might switch Matt to something other than pediasure.
We are also looking into getting Matt a wheelchair or special needs stroller whatever insurance will pay for. Matt has outgrown his stroller and he is even too big for the mall stroller cars. He can't walk long distances he just gets too tired. After a few minutes he goes to his reserve hyper energy and starts getting very hyper and irritable, after that he just gets too tired to walk and I have to carry him. I have even tried a few carriers to see if they help. It is just really hard to carry around a 30 pound child.
Thursday, September 15, 2011
Two days ago I got a call reminding me about the yearly eye appointment I had set up for Matt last year. I thought about cancelling it because I haven't been worried about Matt's eyesight and I didn' t really want to go. I thought, well since we still don't know what is going on with Matt we might as well go to this appt to make sure his eyesight hasn't changed.
We went and Matt is still far-sighted and now we have found out he has astigmatism. The doctor was surprised how well he was able to see with his astigmatism and said in a lot of cases he wouldn't prescribe glasses with his prescription for a child this young but with other health problems he would, to see how to child handled the glasses. He says in some cases the kids really enjoy the glasses because it helps them see better.
I guess he is prescribing the glasses because Matt wouldn't be able to tell us if he was seeing blurry or getting headaches.
We got the glasses today, he is doing pretty good with them. He looks so much older with them on. Anyone want to take bets how long it will take him to break them?
Please ignore the lack of carseat cover. I have got to fix that, yesterday he vomited all over his carseat again and today we had an appt at 9am so I didn't get the cover back on. there is something between him and the seat but it has slip down in the picture.
Saturday, September 10, 2011
Yesterday Matt didn't want to wake up. When he finally got up but he was so sluggish, all he wanted to do was lay down. He wouldn't focus his eyes, he wouldn't sit up straight, his heart was beating fast, he was shaky. No fever. I decided to take him into the doctor since we are going into the weekend and I wanted to make sure that he didn't have strep or an ear infection. After I called for an appt Matt had two loose stools, I thought about cx the appt thinking it was just a stomach bug. We went to the doctor he looked him over and said it could be pre-illness symptoms and if he spiked a fever then call him and he would try to see him this weekend.
After we left the office Matthew was fine. He had energy again, he was playing, eating. Acted like he had never felt bad. We went to my husbands new office to talk to someone about life insurance then we went to dinner. Matthew was totally fine no loose stools no being lethargic - just normal Matthew. After dinner we drove to Target and in the parking lot Matt vomited. We cleaned it up and again he was fine. We got home after shopping and Matt ate some more food and drank a pediasure and he was fine.
I hate that I never know if he is sick or if he is just having unexplained illnesses. This is so frustrating! Let's see what today brings.
Sunday, September 4, 2011
Tonight something weird happened again, we ate enchilada's for dinner since Matt still can't use a fork yet he didn't want to eat it. When I went to feed him the first bite he just spit out. I was so mad, this is something he has never done before and I thought he was just being stubborn. After that, a few minutes later I told him if he wanted to paint tonight that he better eat at least one bite. I put the bite in his mouth and he gagged. He kept saying "mmmmmm" and yummy but he gagged. He asked for another bite and the same thing happened. So I went upstairs and got the camera and got it on video. One thing I have learn when you child goes in and out of skills get everything you can on video.
When I thought about it, I realized he has been choking a lot when he eats but we never eat at the same time and I hadn't really noticed. I usually hear him cough a little or make a weird noise call his name and when he answers I know he isn't choking. Later I fed him some snacks to see if he would choke. I gave him a cracker, he didn't choke but he only chewed it at the front of his mouth for a long time and then swallowed it. The same thing happened with fruit snacks. I don't know if his swallowing muscles are having issues or this is a sensory thing. Tomorrow we have an OT eval, I will show her the video and see what she says. Then on Tuesday I will talk to the ST.
Thursday, September 1, 2011
Yesterday I was doing research on PECS and I ran across PODD it is a form of PECS but it gives a much wider use of language. Watch these you tube video, they are really cool.
I was really excited because I was scared of losing so much communication with Matt and this just opens up a whole new word. The problem is this system is pretty new and isn't very big in the US. But when the ST supervisor was here today I showed her the video and she said we could do something like it. I don't know how long it will take to put together or what steps we will have to do to get there, but I am much more excited now.
I went to counseling today with Dr G, it was nice to talk to him, he is very knowledgeable and I am sure he agrees knowledge is power. He thinks that it might be a milk allergy. Interesting.
I also went to see my general doctor to ask her about some medication. I am doing better then I was last week but I wanted to be on something so I don't go back there. Also in case I get bad news I would like to already be on something to help me adjust. Tonight will be the first night. I hope it helps me sleep.
Here is a picture of my little man, he is getting so big! We have an appt tomorrow with Metlife to talk about insurance for him. I hope that we make it to the appt. If my husband gets home too late he might just want to cancel it because he has been working so hard lately and is very tired.
Edited to add - Tonight when Matt was going upstairs to go to bed he kept saying "I want to tired in your bed." He is misplacing tired for sleep. This is the second time in two weeks. Until the Napkin - Doctor thing, I had never noticed him doing this. (this note is mainly for my records just to have it documented)