Thursday, November 25, 2010
Life may be tough at times, but I know I am blessed. Very, very, very blessed.
We had a beautiful day. Hope you did too.
Tuesday, November 23, 2010
The original pathology report came back normal.
The enzyme tests had to be sent to New York.
The Dr. finally called back today with the results.
When you have to wait for the Dr. to call...it's never a good thing.
She had one enzyme come back low in the muscle test: Succinate Cytochrome Reductase.
It's part of the respiratory chain.
He had to spell it for me.
They recommend further testing. A Coenzyme q10 analysis. It requires more tissue.
We are starting her on 50mg of coenzyme q10 immediately.
He's sending us back to the Metabolic Genetecist we saw a year ago when her Endocrine System went haywire and we heard of Mitochondrial Disease for the first time.
She will tell us if we should move forward with the "further testing." And what else we should add to her multivitamin cocktail.
Guess what else helps kids with Mito? The Ketogenic Diet.
Sunday, November 21, 2010
Sunday, November 14, 2010
This week is a very, very, very busy week for us. Wednesday is the big day getting off the diet. We will spend a long time with the Diabetic Educators, Dr., and Nurse Practitioner formulating a plan for Kendall. She is getting her AFO's re-fitted, and we will also be demo-ing a Rifton Mobile Stander. Hopefully everything will continue to go as planned without any glitches. She's eating well, and seems to be even more alert than before.
My running buddy, Jill, and I are well on our way to completing our marathon December 5th. We did our last 18 mile run yesterday, and I recovered well. Now we begin to taper down mileage until the marathon. I have a small hip situation, and sore knees, but I feel pretty confident I will be able to complete it. I paid the gigantic entry fee last week, so I'd better be able to do it! (and before anybody chimes in about it benefiting Scottish Rite Hospital...please know they have denied Kendall services twice, so I'm a tiny bit bitter, but know they do amazing things for lots of kids! Just not mine....for now!) Either way, I'm running that stinking marathon one way or another this year!
Thursday, November 11, 2010
Yesterday my mom (after all she's been through) found out that she has mouth cancer (again) She will need to have a tumor on her tongue removed in the next few weeks. They will take veins out of her arm and skin from her tummy to perform a 6 hour surgery. While in surgery they will also look to make certain the cancer hasn't spread to her lymph nodes or to her throat. She will also have a tracheotomy. This was quite the blow of disturbing news to our family, but somehow, I can't really explain the peace I have with it all. Holly and I were talking, and its like the attitude we (as moms of special children) have developed is that if something is broken, fix it, go to therapy, and move on. Dwelling and worrying don't do anybody any good. It sucks. Life sucks sometimes. But somebody always has it worse than you do.
Justin got a promotion at work. This is very bittersweet for me because it is a great, much deserved, move in his career, but he will be traveling more than he is home. That will take some getting used to for me. He travels a lot now, but not every week.
Kendall is doing very well. She's making sounds right and left and loves to talk on the phone to anyone who is available. I need to catch it on video. Her facial expressions are hysterical. She has been eating orally lots of new things. I figure if they are quitting her diet cold turkey from 2.75:1 ratio to normal diet overnight, adding a few new things before Wednesday won't hurt. She's eaten a whole serving of Gerber yogurt, a bite of a shredded bbq sandwich, bananas, diced apples, cookies, sugar free ice cream, and has enjoyed frequent licks from lolly pops! All without cream or oil. It has been liberating.
Poor Kamden got 4 baby teeth pulled today to make room for his big teeth. He's been miserable. I about died when I saw how big the roots were. Apparently they get smaller as the big teeth push on them, who knew! He's also very close to my mom, and is taking this pretty hard.
So, ho hum. Keep my family in your prayers in the upcoming weeks, please!
Monday, November 8, 2010
This might be my favorite video so far. It's pretty quick and to the point, but to me, it shows progress. Not long ago Kendall had a huge fear of horses. We so desperately wanted her to enjoy being at the barn and around the horses. We wanted her to benefit from Hippo therapy or Therapeutic Riding. I wanted her to have something special to do with her daddy. And when given the opportunity to warm up to them in her own time, she came around. Now I feel confident that in the near future she will be able to reap the benefits of horse therapy. (we just have to work on getting the helmet on her...and I'm on the hunt to find a custom boot maker who can build her some to go over her afo's....yes, I'm serious...we live in Ft. Worth!)
The contact fitting went about like I expected. I was able to get the hard lens in her left eye, but unable to get it out. The Dr. who did the fitting left it up to me. She said she can return it within 90 days if we decide against it. I said we had a lot coming up in the next few weeks (ending the diet and beginning a normal diabetic toddler diet) and I wanted to re-visit it in a few weeks. So at our next ophthalmologist appointment with our regular PO in December, we will try again...maybe.