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Friday, November 4, 2011

Wow what a dayI

Today started out with exercising at 5:15 am just like we do every Monday,Wednesday, and Friday. We did our routine and worked out for about an hour. We waited to see if we had a nurse today. Which we knew it was a possibility that we may not and we were totally ok with it. Got the kids up and off to school. The I took Eli and Ari to playgroup at the Kansas school for the deaf. It was nice we talked about how to teach reading to someone that is deaf. Heather stayed home and got Jace to his doctors appointment. It all was good until then.

Jace had his appointment it was supposed to be at the location that heather and Jace were at. Unfortunately someone messed up big and scheduled it when the doctor was not at that location. I can only imagine how frustrating it was for them. Earlier as i was coming home heather text me and told me for the 4th time our heater went out and the house was freezing. So just crazy. We just can't get a break. When will our landlord just stop trying to fix things with just parts and take the advice of the professionals and replace the damn thing. So then heather got home and then we ate lunch and got to Jace's IEP.

Heather received a call from Eli's Pulmonalagist and it was pretty emotional to say the least. He wants to get a team meeting together to get a new care plan in place. He has said that if putting Eli on benedryl and taking him off of zyrtec we may have to consider a permanent trach. This would help with his secretions and keep him from chocking at night. I truly don't think it is the best thing. There has to be other options. Maybe I am in denial. It just frustrates me we get going and stabilizing a symptom and then another one flairs up and no one knows what to do.
Jaces IEP went well they are wanting to put more support in place to help him in speech therapy. The speech therapist thinks that Jace has understanding problems when he says a word that it is heard and it should be another. She thinks this is the reason for spelling problems and testing problems. They are going to have someone help him with some of his test to understand what is written. I can't wait to see the changes and how it should help him academically and socially.

Ben is in another one of his moods tonight. Mad about everything. Screaming and shouting. Totally no patients. The life of an autistic child. Some days are good and somedays are not so good. This is one of them.

One frustrating day after the next. Can't wait until tomorrow Heather and I are going to go out and see a movie. Just her and I.

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