Friday, July 30, 2010

Finally Caught on Video!

Our day started out pretty miserably. Kendall didn't want to sleep, so she woke up at 5am. I finally gave up around 6, and we were awake for the day. After breakfast (and my coffee) the day started looking up. We started our morning out with OT, then Speech. She did great during both sessions. Afterwards, we headed off to the Dallas World Aquarium. Kendall loves to pet Chloe, and watches her walk around the house. so I thought she would enjoy seeing some other animals. Since it was 103 here today, we thought it was too hot for the zoo, but the aquarium would be great. We had a very enjoyable day together, and a good time was had by all. I think my kids are pretty special :)

Kendall has been nodding her head "yes" a lot recently. Every time I try to catch it on video something happens to interrupt me, but today at the aquarium, I think I got it. You have to watch closely in the beginning. The otters were coming right up to Kendall out of all the kids kneeling down. They were turning right in the corner where she was facing the glass, and she started wiggling and squealing in excitement each time they passed. I put the camera on her right after, to see what she would do.

Sunday, July 25, 2010

My Take on the R Word...

"I arise in the morning torn between a desire to improve the world and a desire to enjoy the world. This makes it hard to plan the day." Elwyn Brooks White

The R word bothers me. I don't think I ever really thought it was a nice word to use when describing something negatively. Even before I had Kendall. And for me, personally, I would never have written that word down on Facebook, or used it in a professional environment. That's just because I know it can be a hurtful word. I think it makes the person using that word sound insensitive and ignorant. But I know I've used that word before. Many times. Out loud. In front of family and friends, and never really thought twice about it. Until recently.

I've heard my friends say it, and their kids. I've seen people make the gestures or the "sound effects." Again, I think it makes those people sound uneducated. That's their problem. I can't control people's comments, or what they say around their kids, or what their kids say. Depending on my mood, I may or may not voice my opinion. But I will only do it once. If I tell you that that word upsets me (and my husband) as a parent of a child with special needs, and you continue to use it. You suck. And I'm over it.

It recently came to my attention that when Kendall starts school at 3, in our public schools, she will have one of two labels. Autistic or Mentally Retarted. So, if in her file, that word describes my daughter, and my son knows that, then hears an adult use the R word to describe something "dumb" they've done, or calls someone the R word as a noun derogatorily, how do you think that makes us feel?

Look, I'm not an overly sensitive person. I think everyone is entitled to their freedom of speech. But if you've taken the time to get to know our beautiful, special, loving daughter, you would also think twice before using that word. It hurts.

Wednesday, July 21, 2010

One Year Ago...

We started the Ketogenic Diet. Yep, it's been one whole year. I'm so grateful to our wonderful Dr. He was confident in our abilities to maintain the strict diet. I've heard from many people that most Dr.'s don't even attempt it, because it involves so much from the parents, and is very time consuming. But for us, it has been a life saver. I know I've said it many times, but thanks to this diet, we got our baby back from those nasty seizures. Kendall has been seizure free now for 6 months. (with just a few scares in between.) I can't imagine where we would be if we had given up.
It's a shame more people don't believe in this diet. While it has side effects, it is NOTHING compared to the horrible damage daily seizures can do. The seizure meds wiped away our baby girl, but now she's back! We are so blessed.
Kendall is talking more, expressing her wants consistently, and interacting with others regularly. She is enjoying her life. And I couldn't ask for more than that :)

Saturday, July 17, 2010

The Unexpected Chapter in my Life...

So, a while ago....I did something I never EVER EVER thought I would do in this lifetime.

I bought....dun dun dun....


This was by far one of the most unexpected turn of events in my life. I'm sure I sound completely ridiculous to a lot of you, and that's OK with me. I don't expect everyone to understand.
But for me, my car has always been sort of my thing. I traded in a car back when I was a single mom and switched jobs from teaching third grade to sales. This decision was mostly because I was stuck in a really dumb lease, and driving up to 500 miles a week. The current car wasn't going to work for me much longer. But buying my car was also a symbol of my hard work. I had gone through a stupid divorce, kept my house, kept Kamden in his private pre-school, and was proud of being an independent woman. I loved my car. It got great gas mileage, and while it was really small, it served its purpose, and I always felt safe. Their service at the dealership was amazing. Free car washes and oil changes, not to mention any time my car had to go in for service, I had a loan car that 9 times out of 10 was nicer than mine! I loved that car. And a few months after buying that car, I got engaged to Justin :)
You know the rest of the story...
So, a few weeks ago, when I made the inevitable decision to trade my beauty in for something larger, a minivan was the smartest choice. An SUV would have been too difficult to put her in from her chair to her car seat. And I'm not getting any younger.

I haven't given up on the idea that Kendall will be able to walk some day. But realistically, a bigger wheelchair is in her near future. Adapting a minivan to meet those needs is really the only way to go. Her KidCart was a huge ordeal to fold up and place in the trunk. When she was in her car seat, the person in the passenger's seat couldn't even put the seat back far enough to remove their knees from the dash. And when my 6'5 husband tried to drive it, nobody else could sit behind him!

So, its done. I'm a minivan driver. I shed some serious tears at the dealership...for more reasons than just getting rid of my car. But, I'm over it now.

I have come to love my van. It's completely decked out inside. Kamden loves it. I have plenty of room for everything. The kids can watch a movie on one screen and play video games on the other. The bucket seat enables Kendall to be reclined, making her head control less of an issue. The solar screens pull down and I don't have to put sunscreen on her before we head out to a Dr.'s appointment! There's room in the floor for a cooler with insulins, so I don't have to take them inside everywhere we go! All in all, it was a good purchase! And I WILL get used to it :)

Next, I plan to drill holes in my high ceilings in my living room to hang her Ikea hammock swing. Vanity has gone out the window...practicality is my new thing!

Tuesday, July 13, 2010

Friday, July 9, 2010


Kendall seems to enjoy the pool more this year than last. I don't really put any floats on her anymore. She doesn't like things around her neck for extended periods of time, and she loves being in the water, so we just hold her and let her splash. It wears her out and gives her tons of exercise too! We sing, hop, swing, and dance in the pool for hours on end! It's much easier on my back in the water too!

Earlier this week my friend Jill brought her twin boys over to play and swim. We were pregnant at the same time, but Kendall is quite a few months older than the boys. It struck me funny that they called her "baby." They are so cute and active...I don't know how she does it! Kendall really enjoyed watching them play and was extremely vocal while they were there. She also was jealous when her brother was playing with the boys in the playroom. At first she sat in her child rite chair and observed, but when Kamden started playing with Luke, she had a meltdown. I thought it was cute.

Also, Carter was pretending to bite and I said "oh, no biting" and Kendall got a big grin on her face and proceeded to chomp down on my shoulder! It made me smile.

I can't wait for her Kid Walk to arrive so she can have play dates and be eye to eye with her peers.
Oh, and we have exciting things unraveling with her speech, and I can't wait to share next week :)

Wednesday, July 7, 2010

Muscle Biopsy Results

Early this afternoon our Neurologist's nurse called to tell me our sweet Kendall definitely does not have a Mitochondrial Disorder. There apparently are several factors that determine this, and all of those tests came back normal. Yes. Normal.

I started to cry happy tears.

Then, the nurse told me she had a Type II Muscle Fiber Atrophy, but it was not specific to any disease.

Then I was confused. She had these tests run on the 16th, and they all came back quickly. It made me think we didn't have a full report. I called a friend who had been down this road recently, to discover they had the same experience...the initial pathology report came back normal, but the enzyme testing which identifies the different chains, Complex 1, 2, etc....later came back positive.

I then called our Genetecist and asked her to look up the results (thankfully they are in the same system as our Neurologist) and call me back. She reviewed them, and I just got the call. She stated that it was definitely NOT Mito. There are several factors and they all came back normal. The Type II Muscle Fiber Atrophy is very non-specific. It simply means that because of her brain issues, she has hypotonia which is picked up on the test...which really isn't anything new to us. She said there were no results for the enzyme tests and she said it didn't look like they were run in the first place, but she would check with our Neurologist. I asked if we needed to add them if they weren't already, and she said absolutely not.

So there you have it. I guess I had prepared myself for the worst. Hearing this news makes me very grateful that she does not have an identified progressive disease. It brings me back to my optimistic mindset with her. It has removed the looming dark cloud that made me constantly question when the other bomb was going to drop. I could focus on making sure the rest of the enzymes were normal, and figuring it all out, but I've had enough! I need to trust our genetecist that we're in the clear. I don't want to know anything else :)

Thank you all for your prayers.

Friday, July 2, 2010

New Stuff

Kendall's new glasses came in today. She is now a +32 in her left eye, and a +19 in her right. I couldn't even begin to explain this to anyone! All I know is these glasses aren't nearly as cute as the ones I really wanted, but they also aren't nearly as bad as the ones we thought she was going to have to get! So, I guess they'll do. The only things I care about are that they improve her vision, they stay on, they are comfortable, and the lenses don't pop out. Trust me, they weren't cheap :) And they're extremely thick!

And, last week her AFO's with hinges finally made their appearance. They fit like a glove, are very comfortable, and have prevented her poor little feet from turning in. The backs have adjustable straps for more movement. When her VERY OWN KID WALK arrives next week, she will be able to wear them and bend her feet while she runs around :)

Have I mentioned we have a multi-million dollar baby?! Well, we do!