The TRUE torture chamber!

Well, I posted previously about the torture chamber looking device in my living room for Matthew. I guess I was wrong. I took him in on Thursday to get a readjustment for his helmet. Yesterday morning when we took it off, he had a pencil eraser sized bruise on his forehead. I called and left a message, but put his helmet back on. He might have done that when it was off the night before, etc.

Fast forward to this morning. I get a call from Noe telling me it looks like someone punched Matthew in the forehead. Needless to say, he was upset, as was I when I got home and got to see it for myself.



The funny thing, he hasn't really acted like it hurts. Oh wait, except for when he forgets he doesn't have his helmet on and he tries to roll over objects that HURT! He does that frequently when his helmet is off. Poor kid rolled over a lego board earlier.

Today was the first day I got to see the standing platform used. I loved it! I loved seeing Matthew being able to stand and have his brothers with him playing. It was fun to watch them all interacting.








The funniest part was watching Noah put a toy on the table, Matthew picking it up and throwing in on the floor, Noah picking it back up and putting it on the table again, etc. I laughed and told Noah that he now knows how it feels (they love to throw things off their food trays daily.)


I took Matthew to a Shriner's Clinic last Saturday. He got Mommy time for 4 straight hours; I think he actually didn't mind getting poked at if he didn't have to share a parent! They determined that his elbow is not fixable. Even with surgery they won't be able to straighten it. The bone did not grow properly. We had hoped it was a case of cutting out the webbing and some miracle surgery. They also said his muscle in that arm didn't develop properly either. He will have a weak arm. They just want to make sure he learns to be able to wipe and feed. My mouth kind of dropped on that one. They were more concerned with his neck. They took x-rays to make sure it wasn't something wrong with the bone, and it wasn't. Everything looks normal, so we will continue with stretching. If it doesn't get better, some day he might have to have surgery to loosen the muscles in his neck. As for his legs/foot, they are going to have me drive out to LA in 2 months to be seen by a special team at the Arthrogryposis Clinic. There will be an orthopod that specializes in this area, PT, OT, ST, etc. Hopefully we can get some good information! I just want to know if he will be able to walk some day.

I took Noah back in to see our pulminologist on Monday. I have a great love for that man. He is the best doctor in this town! He agrees that Noah should not continue to have strider and off and on wheezing two months later. Something else has got to be going on. I am taking him in to the hospital on Tuesday for another Bronchoscopy. Hopefully he can figure out if it's a cyst again or the narrowing of the throat, etc. If there is something, I might just have to walk into my ENT's office, request all files and records, and kindly tell them I am going somewhere else this time. Unfortunately, if he finds something, he can't do anything about it since he's a pulminologist. I am just sick of being looked at like I am neurotic everytime I take my kids in thinking there is something going on. Although I wish nothing was going on, I would enjoy telling my ENT that there was and I was right!