I thought I would post an update on Josh and how he is doing with his new therapist. He goes to see Tera every week right now at the Primary Children's Rehab center here in Ogden (thank goodness!!)
I have been very happy with her and she seems to be on the same page as me. His other OT, Lynda is amazing as well and I love her too. But Tera has some pull with PCMC that Lynda didn't have. So FINALLY we might get somewhere with some of the problems we have going on.
So as far as progress is concerned, we have made some finally! He is now able to move around soft meltables (foods that dissolve) in his mouth. He is starting to chew a little, but it's an ineffective chew, but still chewing is good. He is eating more table foods now, such as mashed/baked potatoes, lasagna/spaghetti sauce (minus noodles and meat), cheeto's, graham snacks and stuff like that. I am so excited to see him doing new things!
The hard parts of what is going on is the same old issues. He was on thickened liquids for about a year. When he had the swallow study done they told me all was well and to put him on regular liquids. Since then he has steadily declined in his intake and we are pretty much at a standstill. He is only taking about 6oz of formula a day and 1-2 oz of juice, water, ect. NOT GOOD! His lips have gotten cracked and dried out and he is not wetting many diapers now. His therapist has really been watching his drinking and finally today she thickened his juice for him. He took about 4 oz total while there. So she thinks there is something wrong still. Then when you bring the whole constipation issue into the mix.... she is concerned. I told her alot more of the history behind that and she thinks we aren't going to solve the eating issues without this being dealt with first. So she is going to call the Feeding Clinic and talk to them about doing further testing. Up until lately I have been on the fence on doing more testing. But he is not drinking! This can't go on anymore. So we will be waiting for his therapist to call with a plan of action. Sigh.... it never ends!
3 days ago