Made of Gray

Green, Puberty & School

Holly D Gray7 Comments
It's always odd that in Texas Autumn doesn't really bring the beautiful colors of nature that everyone is experiencing this time of year. I long for the reds, oranges and yellows of the season. Fall actually brings back the green for us. After the drought of the summer, everything is crispy brown. The exception being suburbia lawns that are always well manicured. So when the heat subsides and the showers return we get green again.
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Green just so happens to be Caleigh's favorite color right now. Ask her what crayon she wants and it will be green. We have been focusing on holding crayons and trying out some different finger grips for her to use. The triangle crayons are perfect for her now. The big fat "baby" crayons are out the door. She's moving on up.
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Today, Caleigh has asked to color twice. This morning we did a unit study on baby kittens and this afternoon we colored a kitten mask. While Caleigh was coloring the kitten mask, I was working on editing photos. I glanced over at her at the exact moment she was transferring the crayon from her left hand to her right. I sat quietly, staring in amazement. If I had said anything she would have been startled or excited and we would have lost the moment. Caleigh has never transferred from one hand to the other before. It has always been one of those questions on the 6 month/year reviews that I hated. It sounds so easy, but when one side of your body works against the other it's terribly hard. Today, Caleigh did it and she was proud of herself too. Inchstone achieved. Now we work on it happening again by giving her the opportunity. The art career is looking bright.

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Caleigh is recovering well from her scope almost two weeks ago. It took almost a week for the constant pain to subside, but it's better. She actually tells us that she feels happy again. It's nice to hear because it really has been a long time since she's felt that way. Caleigh is also done with the antibiotic for her UTI. I'm sure that makes her feel better as well. After finishing the antibiotic, we started up VSL3, a probiotic. We've tried this stuff before. It's a serious probiotic for people with IBS and Colitis. In the past Caleigh has not handled it, but in the past other things were always to blame. This time our GI wanted us to try it again. Three days in and we made the decision to stop it. Caleigh was bloated, stooling more, complaining of her tummy hurting and not sleeping. That was enough for us. It's been two days since stopping it and she is feeling much better. She even slept the entire night last night.
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The biopsies from the scope have only half come back. So I will do a post when we get all of the results in.

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This past week we had an appointment with endocrinology. It's been almost two years since we've seen them. At the time we were watching signs of precocious puberty. This early puberty is a possibility with kids, like Caleigh, that have had damage to their brains. When we met with them back then, Caleigh was having strong body odor. They told us to watch for other symptoms of the early puberty and to use a salt deodorant stick. So at two, Caleigh started using natural deodorant and we chalked the odor up to increased bacteria in her body. The deodorant never really worked either.
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In the last few months, we started to notice some other symptoms that could be leading in that direction. The body odor is still ever present, occasional acne, no weight loss, and increased hair. So at our appointment they ordered a lot of labs to check hormones and her thyroid. They basically said that Caleigh is headed that way, but really there isn't anything we can do until she develops breast buds and or starts her menstrual cycle. At that point they will start a hormone to stop it. There is no timetable as to when this will happen. It may not happen until it's supposed to or it may be soon. So we wait while our 4 year old is possibly developing too quickly. All of this is due to the brain. The brain regulates the hormones. Just another prematurity sucks kind of moment.

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On to school. Eric and I have decided not to send Caleigh back to school at this time. Besides the disagreements we have had with the teaching staff, we have made this decision based on Caleigh's health. We are finishing up evaluations and assessments in our home this week. We have filled out a homebound education packet and we will wait on the doctor's orders needed for that process. Then we will have an ARD meeting to discuss the details. If anyone has this set-up, we would love to hear your experiences. It seems the options are endless, but it also seems like they want us making the requests. I'm not sure what to request with 2 hours of instruction a week. Curriculum? Equipment? We do plan on supplementing but having the school district on board might help with certain areas.
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Here are the possibilities regarding Caleigh's public school experience related to her health.

1. Caleigh quickly picked up a virus which led to her increased stooling and severe pain.

2. Being extremely stressed on the second day of school caused her ulcerative colitis (which was already irritated from bacteria) to flare up causing the increased stooling and severe pain.

It was foolish of us to believe that we would know the difference in Caleigh's chronic intestinal issues and that of a virus. Caleigh's tummy has always been a guessing game. Why we thought it would be different this time is beyond me. It knocked her down, whatever it was. We tried.

Homebound education through the school district is the logical next step. We've done the meetings, the paperwork and the evaluations. We plan on giving it a try. There are benefits and there are cons to the process. We won't know until we try it. So that is the plan for now.
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