Friday, July 30, 2010
Sunday, July 25, 2010
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
Saturday, July 17, 2010
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!
Friday, July 9, 2010
Wednesday, July 7, 2010
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
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 :)