Shes doing well in school but still very tired and getting used to it. She goes 3 days a week. She really likes the 4 year old classroom and her teachers She did awesome her first day. We were so worried! But she did everything herself, sat on the rug straight by herself, cleaned up without prompting at clean up time, found her "hook" all by herself and listened very well. Very different than last year where she was the kid rocking in the corners or laying on the rug who didn't follow directions. She drew her first family picture which was very cute and even made one face! (remember last year she was the only kid who couldn't even draw a circle let alone a face). She is starting to learn to make the Letter "E" but its slow going. Her fine motor skills are so poor its tricky for her. She can't really hold a crayon or marker or pen and doesn't have the strength or dexterity to do much with it. But shes brought home some projects that have amazed me. The other kids are already making letters and writing but I'm just thrilled with the fact that she drew a circle! Thats huge progress for her.
Once a week she still does speech and OT. Speech said they don't even think she needs it anymore (nor do we) and theres just a few speech issues we need to work on. But in order to qualify for OT, she must have speech which I think is dumb. I'm really hoping OT will work harder on her fine motor skills this year. Last year they focused on gross motor skills but she seems to have caught up with that.
Sophia is sad of course she can't go to school but we put her in a gymnastics type class once a week at the Y which she is loving! She's the most advanced there :) But most of the kids are 18-24 months :) She listens well, sits on her spot, helps clean up and does everything the teacher asks. I have no doubts she'll do fine in preschool next year :) It's so funny to in the past have the least advanced kid and now have the most advanced kid. How can they be so different! Maybe #3 will be right in the middle :)
I think Evelyn is finally day time potty trained. She hasn't worn pull ups in probably 3 months and is doing great with no accidents except naps and bed time. But with her tube feedings its next to impossible to stay dry for those. I hope she'll be pee/poop everything trained by next fall so we shall see!
We still haven't heard from the state regarding her medicaid status but it seems like with the way healthcare is going and Patricks benefits etc, I'd rather have her on it soon just in case the poop hits the fan with this whole universal healthcare thing. Right now we only pay our deductible for her stuff and then everything after that $2000 is covered 100%. I'm afraid whatever this new plan is won't cover things 100% and then what do we do.
Good news too! The insurance company covered her formula for the month of July. Woohoo!!!!! I was dreading that bill when it came in. God answered our prayers for that since we had no clue how we were going to pay for it.
Evelyn goes Oct 5 for her tube change. We are nervous as they don't sedate the kids but we are hoping to talk them into it because of her sensory/no pain thresh hold problems. After that no more tape! No more gauze! No more securing the tube! No more ER trips when she yanks it out! I'm so excited and can't wait to have it over with. No one will be able to tell she has it now :)
Her birthday was good. She had lots of fun. She understood this year for the first time what was going on and is happy to be a big 4 year old. She loved her Cars party and really seems to have grown up the past few months.
Speaking of growing we are now at 30.5 lbs and 41.5". 2 1/2 months ago at surgery she was 24.5 lbs and 39". So shes grown alot! Her autism symptoms, while still going strong, are much less than they were. She seems a little easier to calm down but still her her moments where we can't handle her and she is out of control. Theres no rhyme or reason. We asked her to wash her hands after school the other day and for no reason she threw a full out tantrum and was terrified and had to be dragged kicking and screaming. She still gets extremely scared of food sometimes and says "its too fluffy" or "its too blowy" and then won't eat it again. I've seen the poor kid absolutely petrified of noodles. It's the oddest thing. She still likes routine and hates things out of order. But the incidents of huge tantrums and strange fears seem to be slowly getting less and less. 1 year ago she literally tantrumed from sun up to sun down. Now I'd say maybe only 2-3 times per day. You can't talk her down and can't calm her down and its scary sometimes but I'm glad they are lessening. She seems to be learning faster, improving her social skills, and really catching up to her peers. I almost cried at her first day of school. Last year when you saw her at school you could look at her and know there was something definitely wrong with her. She was not normal and everyone could tell. This year as I sat and watched her that first day, you honestly couldn't tell she was different. She looked like all the other kids. It made me want to cry. I thank God every day we had the strength and courage to do the feeding tube because it changed our lives
My kids keep getting bigger. I bought Sophie's "big girl room" stuff today and she'll go into a big bed next week. Man they grow up fast. Shes such a cute butterball and I love her so much. Shes just a little ball of love.
Baby #3 will be here in no time. We have his/her name picked out but are keeping it a secret. We go for our "big" ultrasound next Wednesday and I'm hoping for a healthy baby. That's all I want after having a child with a lot of issues. Just a healthy baby with all their parts and who grows and thrives after they are born.
So that's us. Nothing much else to tell. We are exhausted with our new schedule but slowly getting used to it. In two months we enroll her at St Johns. A year ago we knew we couldn't send her there because of her issues. Now we know she can go there just fine with only a little help. We are so happy! Sophie will go to preschool nest year too. I guess theres no way to stop them from growing up is there.
No comments:
Post a Comment