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Friday, June 24, 2011

Tube weaned, Maybe?!

Katy began to eat by mouth a little over a year ago. She has had a little trouble keeping her weight up during the winter because she just does not digest when she is sick and she is sick a bunch in the winter. She required supplemental tube feedings during the winter, but never backed off on eating much. We started her on a new med about a month ago. The med is an antihistamine that has the side effect of increasing appetite. We had tried it a few years back, with no results. This time it worked. She picked up her eating by about 20% and is now gaining weight again without supplemental tube feedings. Either way it is the same food(we use real food in her tube, not formula), but now she is choosing to eat it. She is still on mostly pureed foods, but she is doing okay with a little texture now. I have pureed spaghetti meat sauce and cut the noodles into small pieces and she didn't gag. She also tolerated food with rice in it the other day without gagging. I am so proud of her, she is a trooper. After 6 years of tube feeding she just decided that she was gonna eat no matter what. She seems to make the most progress when we just step back and relax and let her decide to do it. It seems that every time I stress out over something and push her in therapy it just doesn't happen until I back off. When I back off and take her lead she does it. It was the same with butt scooting, walking, playing on the play ground, eating and using pictures and sign language to communicate. Next step potty training.

Tuesday, April 26, 2011

My beautiful, bug 7 1/2 years old

It's Here!!!

Sean's Vantage Lite arrived today at his speech therapists office and we just happened to have already had an appointment set for this afternoon. He counted to 100 using his device on the drive home and told me about building commercial buildings and asked me to sing quieter. I knew he had nearly intact full language inside his head, he just couldn't make his mouth say it.

Monday, April 18, 2011


We just heard from PRC, the company that makes the device Sean will use for communication. Our insurance has denied the claim, medicaid approved the claim and it is scheduled to ship to Sean's speech therapist in 3 weeks. Yay! We can work on learning to use it over the summer so he can hit the ground running next year with his new device. I am praying he will be able to catch up to his peers in academics within 3 years, social skills will be more tricky. He is a brilliant little boy, who simply can't tell us what he knows. Katy should be getting hers soon too, but no official word on when. The device Sean will get is called the Vantage Lite by PRC. He chose green probably because the one he tested on was green. This machine should serve him well for years to come and can connect to a computer to do e-mail and has bluetooth capability to connect to cell phones and other blue tooth devices.

Saturday, March 26, 2011

It's the Food stupid

The old saying you are what you eat is so very true.

Tuesday, March 22, 2011

gluten is a big problem

I already knew gluten was killing me, but it may be killing you too.

I have a thyroid problem that may be autoimmune in nature and gluten intolerance that may be celiac disease. I had all the classic celiac symptoms except weight loss, I had weight gain instead. Sean is definitely gluten intolerant, but his symptoms are a little more subtle than mine.

Tuesday, February 22, 2011

So I have a diagnosis for me, really?

I was diagnosed last week with Fibromyalgia, and while I do agree that the symptoms of that syndrome match up with my own, I am just not sure about this. First of all, other causes have to be ruled out and that just can't be the case for me because I have hypothyroidism and possibly something else going on which can also cause about 80% of my symptoms. My last doctor, an endocrinologist who will remain nameless kept me sick by not giving me enough Armour(Synthroid is forever banned from my body, I will never take it again). She uses a pituitary hormone to judge my thyroid function which really makes no sense, then declares my numbers are normal and my symptoms therefore must be psychological. I know this is not the case I feel sick, not depressed. I have been depressed before and this is just not that. If she would have paid attention to my actual thyroid hormones she would have seen that I am hanging by a thread at the bottom of the range. I know that optimal thyroid function will put your free T3 near the top of the range and your free T4 midrange or higher. My endo also said that I was not anemic, but my labs demonstrate otherwise if you pay attention. My ferritin, which is storage iron was at the bottom of the range and my TIBC was elevated indicating that my body is struggling to keep up. I have nearly used up all my storage iron, that is not normal and can interfere with how my Armour works. The endo did say that I was Vitamin D deficient and told me to take a prescription supplement. I went to a new doctor who gave me the Fibromyalgia diagnosis and is running labs again to see what is going on, but she looked at my labs and said no wonder you feel lousy. I hope she works out and leads me in the right direction. She did take lots of time for me and listened to me and seemed to suggest the labs I thought she should. I go back to her later this week to discuss the labs she ran. I just want to feel better than rotten. I am a little shaken about getting a diagnosis that is a chronic, incurable often debilitating syndrome, but have hope that between a compassionate(she has fibro too) doctor and my own strength, faith and smarts I can find the road back to health.