We are very happy to say she was more than qualified :) We will now receive our OT through the school district free of charge. All I can say is Woohoo! However, because it's a school district, they don't see children in the summer. So I'm not sure what we are going to do. I was so happy to start getting OT we didn't have to pay for anymore only to realize the school year ends in 2 months and we will have to figure something else out until September. My choices are to fight the IEP and demand summer services (which I'm not gonna do), pay out of pocket for private OT again all summer and huff it to Waukesha every week with both kids, or do nothing all summer and hope for the best. Nice options huh?
The test results were somewhat saddening. We knew she was behind, but these are the first "official" results.
So this is how she tested:
Social Skills: 18 month level
Fine Motor Skills: 20 month level
Gross Motor Skills: 25 month level
Visual Perceptive Skills (no clue what that means):20 months
With an average score of "6" on this test. Scores of 4-9 are considered "poor typical development". Woohoo. So my almost 4 year old basically is functioning at about a 21-22 month level. Other than speech which is at a 5 year 4 month level (Rain man anyone?) It's so odd because she is so verbal. Most kids with these delays aren't, so when they say they function at a 18 month level, they look like they do. Evelyn is kinda weird in the fact that she really functions at around a 20-25 month level but has this amazing speech. So it really doesn't look as bad which is good for us I guess! I think the testing is pretty accurate as Sophia can do many thing Evelyn can't or started doing what Evelyn just learned how to do. So Sophia started lacing beads or building towers around 20 months, around the same time Evelyn started shortly after. So basically they are kinda the same which is neat in it's own way. They can both teach eachother. I've heard that kids that are delayed do better with peers who are the same age Developmentally (not actual age) so for her to be the "same" as her sister will help them both grow and develop.
The school district also agreed with us in our decision to postpone school for now. They agreed with her preschool that it would not be good if we sent her next year. They aren't sure legally if she can start 4K at age 5 but they think since she's in special education they can somehow swing it and make it happen. I hope so!
As for her weight.....she is not gaining and has lost a little. After 1500 calories roughly a day for the past two months she tops out at a whopping 25.5 lbs.
So we scheduled our appointment with the doc for the beginning of April. We will now go forward with all the testing we've put off. I really want testing for allergies and genetic testing which is what he wanted, but I also want cystic fibrosis, hypothyroid, and scopes done as well to look "inside." If they can't find a cause that is fixable we are quickly heading into feeding tube territory. She can't weigh this little for much longer and still stay healthy. We have also noticed she seems to have completely stopped growing. Her sandals from last year still fit perfectly meaning her feet haven't grown in a year ( a good indicator in kids for growth). She is the same height as about a year ago as well. Before she'd grow but not gain, and now she isn't growing at all.
She seems to be getting more tired too. Alot of days she'd rather lay on the couch and do nothing or in bed than play. That concerns us.
I no longer have a fear of a feeding tube. I'd love if we can fix it without that extreme, but at the same time, I know it will give her the right nourishment she needs. These kids can get an extra 1,000 calories overnight! We'd have to make sure she does feeding therapy so she doesn't stop taking oral foods though. Every parent I've talked to who has gotten a feeding tube has said it's the best decision they ever made. None I've talked to regret it one bit. Their kids thrived after. They gained, their developmental delays lessened, their speech took off and their social skills took off. Their body was using every ounce of energy just to survive that it had none left to develop and learn and play. One parent I talked to also had a child who was diagnosed with Autism. They got the feeding tube and within a year was no longer labeled as autistic. It wasn't autism. It was strictly malnourishment causing her symptoms
So I have mixed feelings. One on hand, I can't imagine marring my child's body with a feeding tube. My job is to protect her, not shove a tube down her throat or through her abdominal cavity. On the other hand, what we are doing isn't working. How much longer can we wait before she gets too sick?
So that's our recap of the past few weeks. We will keep you informed after her appointment (which I think is April 6th).
No comments:
Post a Comment