Next change is a comin

Wow what a month!

Whitney had an N-J tube placed on December 22nd. We tried to place a g-tube but she kept vomiting and it would come out. So they wet all the way to the jejunum and put a bridle in to hold the tube in place In her nose. 

While they were in there, they did an upper endoscopy and a contrast study.   tHe doctors confirmed Whitney has Superior Mesenteric Artery syndrome. That's pretty darn rare. It has been causing the bowel problems Whitney has been having. It has caused he lack of hunger, and probably the crazy way she sits all curled up. That apparently takes away some of the pain from this syndrome. 

So we all learned how to feed Whitney through a tube. She comes home from school and goes on the feedin pump at 4:30. She gets four bottles of pediasure each night for an extra 1440 calories a day. She grazes on a small amount of food during the day, probably to stave of the small amount of hunger she has. 

We have had some great success! Whitney was in the 5th stanine below normal when we started. She has shot up in weight by 10 pounds as of last week! We are shooting for 80 pounds which will put her onto the "normal" chart,albeit at the bottom. She grew a bit taller too. We definitely need some new clothing. I actually bought some pajamas that I do t think I need to alter! That's a first. 

So now on to the next stage...the nasal tube comes out Thursday. She will have surgery to put a g-j tube into her stomach, with the tube extending into her jejunum. We are planning to only be in overnight, then home to rest and learn to care for the stoma. She will have that for a wile and eventually we will move to a G-tube which will help her get off the pump feeds. 

At the rate she is gaining, we will probably hit goal in 6-12 months. We definitely are pleased with the progress and are hopeful for getting past this and getting Whitney back to normal hunger patterns. 

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.

New School, New After School Care, New Vitamins

Whitney had her first day at Creel Elementary today. She seemed happy tonight, and the teacher reported that she was happy at school. I hope she maintains this disposition. The class is certainly behind her academically, but the point is to help her behavior right now. She has swimming tomorrow, which should be very interesting.

Creel did not have any spots open in after school care, so we chose to put her at a daycare for after school. There are about 15 children in after school care, and they vary in ages. It really is all she talks about at night. She seems to love it. We started her last week during christmas break so she wouldn't have all the changes to her schedule today. They picked her up at school, and Jeff picked her up after work. It's right around the corner from his work, so it is highly convenient. We have a friend who works there, so that eased this transition quite a bit. I chose this daycare because they didn't balk once about whitney's toileting issues. They said "Taking care of kids is just what we do." The other facilities really seemed to have an issue with helping a child use the toilet. Geez.

We started Whit on a mitochondrial cocktail. This is a set of vitamins she takes twice a day that improve cell function:

• Carnitor
• co enzyme Q10
• B1
• B2
• C
• E

We started this by going to a compounding pharmacy and getting them to mix it all into a liquid...shake Well! Whitney wasn't having ANY of THAT, so we had to go a different direction. I got the coQ10, C, and E in gummy vitamins. What a help that is. Whitney swallows pills pretty easily, so the others go down ok. She balks sometimes, but we just come back later. A little applesauce and she is usually good to go. She is taking Melatonin to extend her sleep at night, so that is quite a load of pills.

It's going to be some time before we see any differences, but she should start to see some strength and endurance improvement. Fingers crossed!

Our Hard, Sad School Decision

We have decided to change schools. This is not a light decision for us as we all love our home school and Whitney's teacher.

Whitney is so unhappy at school. The non-compliance continues. We just need to step back and give her a chance to heal these feelings, giving her another setting. We feel a bit like God has been saying, "Thou shalt change schools" for some time to us. First the rezonning, when we fought to stay at our home school that we all love, then the change in teachers last year that was a huge disruption to Whitney's happy and academically productive school life. Now God and Whitney are just putting their feet down and saying to us, "She needs something different." We are listening this time.

There is a school near us that specializes in ESE students. They have 200 ESE students in addition to their "normal" academic track students. This school gives us the opportunity to try different classes for Whitney to find the right fit. We do not have that at our current school. The class she is in is our only choice. Most of those students are on the FCAT track to take the state diploma test in 10th grade. Whitney is not. It is not the right environment for Whit.

The new school has a class that is a tad too low for Whitney, and one that is a tad too high in ability levels. There is no perfect fit, but we can start her in one, and move her. Because of the behavior issues causing her to shut down, we are probably going to start her in the lower class, let her heal mentally, then move her into the higher class. It will be nice to have that option.

The school has other great things for her. They have an indoor pool and she will have pool sessions twice a week. Their physical therapy room is so well equipped. Things we asked for at our current school, and even offered to buy, are normal at this new school. I do have some trepidation. Some of the staff we have met so far do not seem quite as caring as those at our current school. We liked the teacher we met who teaches the lower class we are considering to start Whitney in, so that is a positive.

Its a scary move, and sad, but we think it will be for the best. There were weepy eyes around the table when we made the decision. Whitney is sure loved at our current school.

Rough times continue

It continues to be a really rough year for Whitney. I feel a little helpless. She used to love school so much; now she is shutting down and has become completely noncompliant. Things she loves like the iPad, ballet are not motivators for her any more. The Behavioral Analyst at school thought it may be sleep related. 

We saw a sleep specialist (add another person to our caregiver list - we now see someone in almost every category of the Florida Hospital specialist list). We TRIED to do a sleep study for her. Remember the problems with EEGs? Now imagine trying to put 50 leads all over her body and head and keeping them there all night. I tried to tell them on the phone that this was going to be an issue and we better talk before going into this. They placated me and told me the technician would work it out. Well..when we arrived for the study, the technician boasted "I have only sent home 5 kids in my entire career!" Of course I was thinking..."and this will be number six." Everything was fine until the first lead went on her leg. She lost her mind. We got 5 on, and then I put a stop to it and went home, quite a bit irritated.

We made an appointment with the sleep doctor.  I'll call him Dr. Dreamy because, oh, that ACCENT...and he is a sleep doctor...He apologized and said he told the tech that we are not in this to traumatize kids and we will find another way. THAT was the right thing to say to me. We talked about her sleep patterns which have been odd for many years. She was only sleeping 8 hours per night, no matter when we put her to bed. She would nap a lot during the day. If she didn't nap, it didn't matter at night. 9 years old and still trying to nap at school!


He suggested we first try a good dose of melatonin and getting her an extra hour of sleep each night. So we started her on that. We have had a few 4:30 am wakeup calls, but she makes it through the night most nights now. She definately is HAPPIER at school, so there is a difference. However, she is still non-compliant with school work.

Back to the drawing board....

Difficult start to school

It was a great start to the school year. She was happy, doing good work...then two weeks into school everything changed. She started throwing fits, crumpling into a little ball on the floor, falling asleep there to get out of working. We thought it was a phase; we had been there before. But it didn't go away.

I wonder constantly about last year and how she had a lot of free time in the classroom. I think she got used to being undirected. It was not the best academic year, but we had fought to stay at our home school despite rezoning, so we felt a little obligated. I am afraid keeping her there has produced this behavior this year. I skipped over most of this last year in this blog. A few weeks after our great start to school last year, a teacher left. The school reeled for a few weeks with Whitney's wonderful teacher being pulled to teach another class. They hired a new teacher, who didn't quite have what it took to manage a class of ESE students. She was NEW....new to teaching. Nice enough, but maybe a few too many video days in the classroom. Whitney went from reading at a first grade level back to not knowing simple sight words. That is where we start this year...back where we were two years ago academically.

Of course, these challenges could be physical. We talked with our neurologist. We decided to try ADHD medicine. Once we found out Whit has a Mitral Valve Prolapse, it limits our use of stimulant ADHD medicine. That leave two medications. We started her on Intunive at the beginning of September. It was an amazing two weeks, then it stopped working. Oh she was TIRED! Intunive was originally a blood pressure medicine. It made her a little dizzy, and VERY tired. We already had sleep issues - long afternoon naps, inability to go to sleep at a reasonable time....well, we kept her on it for another month, trying different times of day, but nothing worked, so I stopped that medicine.

We are back to where we started....

Hard Year

We have a new person in our circle of caregivers. Dr. K is our new neurologist. We started seeing her in June, and what a difference from our last neurologist - the one with no bedside manners. We drive to Orlando to see her, and our insurance doesn't play well with them so we pay for the visits, but it's worth it for what she gives to us.

We started with another EEG. Aye yie...I hate those, and Whitney hates them worse. Her sensitivities make putting those leads on a real nightmare. I gave her a bit of melatonin before the appointment on Dr.s orders to calm her down, and she did fall asleep to do the study...but again, nothing irregular showed up. We also did another MRI with the same results - no abnormalities.

We did 2 rounds of blood tests, and did see a few minor abnormalities that supported what the Dr. was thinking - this is probably a mitrochondrial disorder. That is way more than we have ever had...a possible direction to look in. To confirm that we need to do a muscle biopsy. Again the insurance is not going to play nice - they won't cover it so we will need to pay. Do we do it? I dont' know. Its painful, and even if we know, treatment does not change. We can put Whitney on a mitochondrial cocktail to support her muscles and growth, but there is nothing else we can do. This is not fixable....we just may be able to mitigate some physical symptoms.

Best Day EVER!

What a great day!

Whitney had a fantastic day today. We had ballet this morning. She was in the GROOVE! She did the whole ballet routine, even switching places when the time came. Then she did most of the tap. She did FOUR forward rolls in a row with little help. I am just amazed what motivation 12 little girls in pink can be for Whitney. She will do about anything to keep up with them.

After ballet, we had a birthday party for one of the girls in dance. It was held at SnipIts, a salon for children. They have a party room and do dress-up/hair/makeup parties. I have never felt like such a normal parent before. This was the best party we have ever been to, even our own. Whitney participated in all of the activities. Of course the day had a lot of mirrors, Whitney's favorite thing in the world! She even had her hair styled, sitting almost patiently. She did her makeup, and dressed up in a princess dress with little princess shoes. She happily walked down the red carpet and let everyone take her picture.



She kept up so well with everyone. I also see her starting to develop a circle of friends - school and ballet. They are about 2 years younger, but she gets along well. Its wonderful to see her socially interact and work with that strength.