Thankful

I have a lot to be thankful for...a loving family, friends who wrap their arms around me and pull me out of a funk anytime I get bad news, great therapists and teachers for Kendall, nurses who save my sanity on a regular basis, and I'm surrounded by love.

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.

Muscle Biopsy Enzyme Results are In...

6 months later.

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.

Happy Thanksgiving.

Exhausted

Wow. Where to begin.

After our 3 and a half hour appointment on Wednesday, we left the Endocrine office with our heads spinning. Basically, we are starting the whole Diabetes thing from scratch. She now has a ratio, a correction factor, a sick day plan, and a what to do with ketone plan. All of these things are completely new to us, and have taken a lot of getting used to.

To make a long story short, we arranged for our home health company to deliver the new formula on Thursday. I was shocked when everything arrived on time Thursday morning, and we were organized enough to completely be off the diet on Friday. We have a new binder where we have her protocol and carb counting procedures. By Friday evening, her Ketones were 0.1 on the blood meter. She has been eating everything without any aversions. All textures. Including liquids out of a sippy cup. The girl likes her food. She likes it so much I actually had to restrict her intake of the Pediasure because her sugars were running so high. For two days now she has been above 250 consistently. Tomorrow I will fax in her numbers and hopefully we can change her ratio and remedy it.

Everything has been going very well. She is more alert and enjoying food. We haven't seen any of those nasty you-know-what's in a while. If they do come back, we scrap everything and get back on the Ketogenic Diet.

Last night I left for a birthday dinner for my friend, but returned before the dinner because Justin made a mistake giving the long lasting insulin instead of the short acting correction factor. Mistakes happen... He felt very bad about it. But it then turned into a second night of checking sugars every hour. Her blood sugars went to "HI" on the meter, meaning they were over 500, and in the middle of the night they dropped so low it required more juice to bring them back up. She returned to a normal sugar at 7am, but since then she is back up in the 300's. I know we will figure out the right ratio eventually. Most of the time this is done in the hospital when a child is newly diagnosed with diabetes....they have an iv, and levels are adjusted accordingly. We get to do it in the comfort of our own home. But it is exhausting.

We will figure it all out this week I'm sure. Just in time to start the insulin pump on December 10th. My mom's surgery is December 7. Kendall has 4 specialist appointments between now and then. Oh, and did I mention our nursing hours dropped?! yeah.

So, my head is spinning. I'm extremely irritable. So is Kendall, but who can blame her with such a huge sugar fluctuation. Justin and Kamden are going hunting, so I will be on my own again. But sometimes it seems like when there is just one person solely responsible for big changes with her, it works out better. I'm sure it sounds insane, but in the middle of the night, I actually dream about what her sugars are doing. I wake up to check, and on more than one occasion my dreams are right. I also set my alarm to wake every hour, but tend to wake seconds before the alarm goes off.

*****and an update.....2 hours after i wrote this....she had a freaking seizure.

Evening Out

Justin and I happily dropped the kids off at Nonny and Poppy's on Saturday night, then headed downtown to enjoy an evening together. We had a very nice dinner and then went to a comedy club where we laughed our butts off. Our anniversary was last Thursday, so we were very happy to get out together and celebrate Justin's new promotion and our 4 years of marital bliss.

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!

Ho Hum...

Well, this post isn't going to be sunshine and roses.

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!

Video...

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.

Time Change

Kendall doesn't get that Daylight Savings Time is over. Hopefully that will change as the week goes on, but today has seemed like the LONGEST day of my life.

We went to the zoo again to try and break up the day. She did remarkably well in her chair and didn't fuss the entire time like she usually does. It may have helped that the weather is getting cooler. I guess I will remain optimistic that the more she's in it, the more she'll get used to it. Caleigh is a great role model. I'm hoping peer pressure will work.

Tomorrow we go for our second and final round of contact fitting. I hate to put her through it again, but will feel guilty if I don't at least try. Crossing my fingers.

Cranky

Don't let her cuteness fool you.

Kendall is cranky. And I am cranky because she is cranky. Some days she is so stinking high maintenance. The past two days have been perfect examples of this. She has to be held, read to, swung, or her latest favorite...playing house with her baby doll, ALL the time. I wish that she would just watch TV or entertain herself in some way. Just playing on a blanket with toys and scootching around would give a much needed break to everyone. As soon as she's left alone, she screams. She reaches up and grabs her hair by her ears and then screams louder because she's pulling her hair. It is making me crazy. When she is in her chair, she's fine. Good posture, looking around, singing. But as soon as you stop. It's all over. Same thing in the car. She actually yells "go" when we are at a stop light. So I go, and she stops screaming. It is Kendall's world. We just live in it. But it is VERY exhausting!

Contact Disaster.

Halloween went well. Kendall knocked on some doors and received a bunch of candy that she can't eat. Before we went trick-or-treating, Daddy decided Kendall needed to learn how to be a witch. He zoomed her around the house on her broom, and she loved every minute of it!

Kendall was fitted for contacts today. Because she has thick corneas (instead of round...they are a little more flat) and has an astigmatism, she was unable to wear Silisoft lenses and we had to go with RGP. Hmh.

Everyone laughs whenever I bring up her wearing contacts. I don't wear contacts. But I figured it was the next best thing because she won't keep her glasses on. I also thought it may even be an option to split the difference. Making her wear both and have her glasses lighter and thinner. But that's not the way it worked out.

We spent an hour and a half trying to put them in and take them out. We did it. But they slide down off of her corneas and she screamed bloody murder the entire time. So, the Dr. took them off and we left with an appointment to go back next Monday to try again. I don't plan to give up because the things were extremely expensive. (we hit our insurance deductible back in February, so they are paid for) And I really want them to work. But it was very stressful.

And did I mention they are the size of a pencil eraser? Well, they are. They are tinted and marked for each separate eye, but still it will require lots and lots of practice. And if we lose them in the process, we will be responsible for paying for the replacement.

I intend on thinking this over for the remainder of the week. Is it worth it? I don't know. What I do know is that since the traumatizing experience at the office today, she hasn't taken her glasses off once. I think she's thinking they may not be so bad after all!