Tuesday, February 19, 2013

To Start Again...

Today was Matt's first day back in therapy. Even though we have the approvals for all three disciplines only OT has been scheduled. We stopped therapy very soon after Matt's therapy. I wanted to switch to an out patient clinic setting. While waiting for the approval my van broke down. We haven't had the money to fix it and it isn't a priority. We have my husbands van and can manage to get by. If my van ever gets fixed I would like to go to an out patient clinic. I think Matt would enjoy it so much more and get so much more out of it. Today the OT came, so far I don't know if I like her. She doesn't seem like someone who works well with children. She seems like the type of person that expects a child to do what she asked with no questions and doesn't seem like the type to try to motivate well. Not a good mix for a child that is a weak motivator. We have been on the therapy road for years. My favorite therapist of all time I started out not sure if I would like. So I will of course give her a chance. Going back to therapy sucks! It has been such a nice break!

Wednesday, February 13, 2013

Starting CoQ10 and vitamin e

I have pending post in my mind but I wanted to have a quick post mainly for me as a tracker. I got a call today from Matt's metabolic doctor. (well the nurse) She wants me to go ahead and start Matt on CoQ10 and Vitamin e. I missed the call but she left a voicemail. With the CoQ10 he will be on 10 mg per kg and the vitamin E he will be on 200 IU per day. I am hoping to talk to her tomorrow to get more details like if I should split it up, give it to him on an empty/full stomach and best time of day. I did go buy both supplements today so we could start tomorrow. I did not get information on the test for addisons. I assume that it was negative or they would be doing more testing to confirm and we probably wouldn't be starting part of the "mito cocktail" since Addison's is treatable and not with these supplements. Matt also has his 5 year old check up tomorrow. I have been avoiding it, but we need the doctor to write some orders for the nurse so it was a good time to go in. I just hope there is no vaccines to worry about.

Monday, February 11, 2013

Must Remember!

Yesterday was a perfect day for Sea World! The weather was beautiful the park wasn't very busy so there were no lines. Really it was ideal! We got to the park got some popcorn (a must in Matt's book and I am so glad he can eat it!) then rode some kiddie rides and went to feed the ducks. Matt loves to feed the ducks he can do it for over an hour. Then we rode RioLoco. Matt just got tall enough this year so we have only been on it a few times. The ride left us drenched! I didn't have a change of clothes so after a few failed attempts at drying off we had to leave early. Matt just can't maintain body temperature. Even though it was in the 70's yesterday being wet let him shivering. When we got to the car I took off all of his clothes put on a dry diaper and a jacket we had in the car and turned on the heater. I hope that this time I learn the very important lesson always have a change of clothes! When we got home Matt has a slight fever and off and on today he has had a fever. I think it is just a compensation fever getting his body back to normal. I am praying it doesn't turn into anything else. Tomorrow is one of my favorite little girl's birthdays! Matt's best friend Ally turns 5 tomorrow! I can't wait to spend the day with her tomorrow celebrating! These kids are growing up so fast!

Sunday, February 10, 2013

Friday, February 8, 2013

Wednesday, February 6, 2013

Good Reason to Blog

Tonight I found comfort looking in my archives at last February. There were not many post, (only 3), but in one of them I mentioned regression. This year Matt has been regressing again, it worries me. This last few weeks his language skills have tanked. I am guessing he has gone from 80% or more intelligibility by me to maybe 40%, probably less. At first I wasn't sure if it was just because I was sick but his nurse has noticed it too. It is frustrating. I haven't noticed any energy loss. He is more hyper active (always moving) and more aggressive. Of course those are also signs of tiredness. This weekend I got bit for the first time in a long time. He usually tries but I am fast enough to prevent it. Sunday I must have been off of my game because he caught me with his canine tooth and dug in. Around the bite area my skin is bruised 1-2 inches around it. Tonight I took him to Chuck E. Cheese, when it was time to dance with chuck e, he looked like a fish out of water. I wish I had recorded it to compare to the other videos. He knows the dance well and most days looks pretty good doing. Today he was just all over the place. He hit Chuck E and some other kids a few times. His arms and legs were everywhere, his kick was up high nothing like the norm. I hope this is short lived and not just a preview of what this summer holds. Today, he started using his ipad for a communication device again. I need to give it a major update to add all of his new found interest from this year. Side note : A few weeks ago Matt's iPad was stolen from wal-mart. I think someone must have been following us around and when Amy went to use the potty and I looked away someone must of reached in and taken it. It was a hard loss. Whoever did it knew what they were doing and it was never logged onto wifi. We did end up replacing it, it was a hard decision. Such a big purchase. This time we got one through verizon so it has the network so if it happens again hopefully we can track it right away. I am hoping I can find a way to make it almost impossible to turn off so it will stay on and be located. We also have insurance on it, so if it does get broken or loss it will be $200 to replace instead of $800. One more quick note - Tonight Matt started He chewing on his clothes. I haven't seen this in over a year. I hope it is short lived. Matt is always looking for comfort lately. He is needing pacifiers all the time, wanting paci-cow and carrying blankets around. I did buy him some of those adien and anais blankets which is nice for summer time.