Big changes coming

Whew I am a little scaredexcitednervous. Yeah that word. 

Whitney want to see a GI at Nemours last month and he felt strongly it was time for a feeding tube. She is not gaining weight despite supplements and meds. So to the hospital we go next week. 

We will be at Nemours from Monday Dec 21-24. Hopefully getting out Christmas Eve. She is getting a Nasal tube this month. That will hopefully strengthen her and set her gaining weight so we can put a permanent tube in around February. 

I am thinking this is not going to go as well as her doctor expects. I am not really sure we will be leaving with a feeding tube unless they tie it In place, which is a possibility. 

The school is worried. Some staff actually asked guidance of they had to take her. Our dear guidance counselor said,"of course we will take her and we will get through this together."  They are scared too. It's new to some of them. 

Well I am sure I will post as we go along. Too many feelings to keep pent up. 

School Research

I called our assigned middle school for next year...and they basically said they would not take Whitney. Her IQ is below 45, and she still has toileting issues. They do not have an attached bathroom on their unit, and dont have enough aids assigned to the room to handle her needs.

SO, onward...We visit another school Thursday. Hope that may be a solution. Its smaller, and hopefully more able to meet her needs. We apparently also have an option to keep her at her current school for one more year, then transfer into the high school supported unit. That's kinda crazy, but may work.

The new medication to make her hungry is working! I have never seen Whitney eat so much. I think she ate more Saturday than in an entire normal week. Sunday...not so much. I swear she grew an inch since we put her on that medication. She was almost at my chin this morning.

It has been a while!

Here we are at another cross-road. Moving to MIDDLE SCHOOL next year. Its hard to believe Whitney is going into 7th grade.

We are zoned for a school I would not wish on an enemy, so the hunt for a home begins. We have our eye on a beachside school, but it will mean a lot more driving for us, at odd times of day due to start times of school. They have a smaller school with a great supported ESE unit. I talked with someone from UCF Center for Autism last night whose friend is the teacher, and she was very glowing. We are setting up a visit to make sure it is the right fit, then a joint IEP meeting will be held with that school. I'm making a little portfolio for Whit to help introduce her to the new staff - likes, dislikes, strengths, triggers....I think it will help the transition.

Let's see, some catchup:

We are still seeing the neurologist in Orlando. Love her lots. We are really struggling with weight (53 pounds at age 12 is below all the normal charts...yes below the CHART, not the line), so we are trying an antihistamine that has a side effect of hunger. Day 5...she ate her entire breakfast. I am encouraged, but she is mapping longer. Have to watch that. We also doubled her Carnetine. That basically helps clean metabolites out of the cells and moves long-chain fatty acids into the mitochondria.

We spent 2 years without milk...we saw some slight changes, but nothing to get excited about...so we moved Whitney onto a gluten-free diet this year and put her back on milk products, including ensure. We all think the GF diet has produced a profound change. We know she does not have celiac disease, but I think she is sensitive to gluten. The instances of behavioral melt-downs have almost stopped at school and at home. If she eats gluten, we can almost guarantee seeing some sort of anger/extreme frustration reaction. She is so much better at controlling her emotions. Yes, that could be maturity, but we are going to continue that diet. Its pretty easy...so much replacement food available. She does miss pizza, so I give in when we are at our favorite restaurant with nothing planned the rest of the night. That does not seem to have lasting effects - maybe 12 hours of iffy issues.

Whitney is shooting up so tall though...she is shorter than others in her grade, but boy she is growing fast. I think it has been a good 2 inches since august based on letting her hems down. She is over my shoulder now. WHEW.

Whitney has a lovely nanny now. Paige is just a part of our lives. She lives in the poolhouse, so in emergencies she is right here. She helps Whit with her homework, and we have seen a lot of improvement with her having time to spend on that rather than the rushed after-work job we could do. Paige has some nursing experience too, which has been a great help to all of us.

We added a wheelchair this year, after Aunt Erin said.."why not?" It has made such a difference for very long walking days like at amusement parks. The crying and whining has almost disappeared. It was a mental hurdle, but she needs it to be comfortable. I'm glad we made that decision.

Well, that's all for now...I'm sure as we transition to Middle School I will be posting more.