Wednesday, December 22, 2010
Daddy gives Kendall rides on his shoulders every night and it returns huge belly laughs and squeals.
Friday, December 17, 2010
I always thought I'd get my master's degree in education...then life happened, I had Kamden, got busy with teaching, then I switched careers and wanted to get my MBA, then I had Kendall, and life happened again :)
So here I am staying home and definitely keeping busy with Kendall each day. I've had a file on my desk to apply for graduate school for about 3 years now. Well, I finally did it. I was accepted and even received some grants to help cover the cost.
I will be working toward my masters in special education from Texas Tech University...mostly online. Initially I wanted to just get my supplemental teaching certification to be a certified teacher of the Visually Impaired. But after talking to a few advisers, I decided I'd better commit to the whole thing if the certification was going to get me half-way to my master's degree anyway. And now it's official. I start classes in January :)
I certainly don't know what the future holds for my family, but the way I see it, the things I will learn will only help me help Kendall along the way....so it's a win-win.
So it's back to school I go. Maybe it will be different this time around without the 5 nights a week fraternity parties and skipping classes. (sorry, mom and dad...you sent me to a private Christian University....what did you expect?!)
Tuesday, December 14, 2010
Kendall screamed and cried the entire time. Probably because right when we pulled up to the office, she had a huge dirty diaper and her poor bottom was raw.
When Kendall cries during an appointment, I have to pull her out of her chair and hold her. She's gained weight since getting off the Ketogenic Diet. A lot. When holding her, her feet almost go to my knees. She's big, she's heavy, and when she's upset, the arching and twisting make it even harder to hold her. She was sweating and having muscle spasms, and so was I.
I'm not a scientist, or a Dr. I don't remember anything from high school about cells. At all. This is all just way over my head.
Our Metabolic Geneticist is an MD and a PhD. She is very soft spoken. I've liked her since the second I met her a year ago in the hospital. I don't like all of our Dr.'s but I really do like her. She's very thorough. She listens, she reviews everything and doesn't jump to conclusions.
A year ago, she was the one who did not want the muscle biopsy. We did it anyway. She reviewed the results with the other Geneticists in her office. Yes, her Succinate cytochrome c reductase was low. It was a 31, and normal is in the 50's. That means her Mitochondria isn't working correctly. That was the only thing abnormal. In order to fully understand this, a coenzyme q10 analysis was recommended by the lab. They don't have enough of a specimen left to do that. Kendall would need another muscle biopsy. More blood work could be ordered to get more specific information on the rest of it. She was willing to do whatever I wanted.
That's when I snapped. Literally snapped. I think I scared the poor woman. I have had enough. No more testing. No more answers to tests that I don't understand. No more searching for Dr.'s who can "specialize" in my daughter to further their research. I'm finished. I've lost my desire to change the world. My primary care is Kendall. That's my focus. That's the reason I get up everyday, to be a mom to my kids. To make sure they are happy and as healthy as they can possibly be. That's it. I don't have the energy to do any more than that.
Since there's nowhere for this road to lead, except labels and more tests. I'm opting out. If there were cures and medication proven to slow progression and improve quality of life, I would consider it. But there aren't. So I'm all finished.
She stopped the appointment and calmly told me that she agreed with me. She feels the same way. Kendall's file isn't going anywhere. If I'm not searching for answers, there's really no sense in putting her through all the testing. If something else comes up down the road, we can revisit it and order the tests. Then she said something I've been thinking about all day. She said one of the men in the lab had told her ordering tests is "kinda like picking your nose in public." Basically, you'd better know what you're going to do with it when you get what you're looking for. You'd better have a plan.
There isn't a plan. There isn't anything that can change my daughter's genetic makeup. Nothing. So, I'm choosing to live my life now. Without regrets. I don't care if I have a name for what she has, or a reason. CDKL5, Mitochondrial Disease complex 2 or 3... Truth is, she's Kendall. She's always been special. She always will be.
The statement above is a very easy thing for someone to say who isn't living this life or dealing with these issues on a daily basis. It is probably something I would have said to someone if I were an outsider looking in on a family facing these decisions...but the truth is, everyone is different. Getting me to this point has been a process. But it works for me. I might change my mind later a year or two down the road, and she said if I do, we'll pick up where we left off.
I did the best I could today following up on the results, but I don't feel any different. If I could change anything in this whole process, I wouldn't have done the muscle biopsy in the first place.
So no more testing. No more nose picking. I'm all finished.
Sunday, December 12, 2010
Saturday, December 11, 2010
I mentioned a few weeks ago that my mom had oral cancer. The surgery she was to undergo involved cutting out the tumor and surrounding area on her tongue, replacing it with an artery and tissue from her arm, and skin grafting the arm with tissue from her leg. We weren't sure what the recovery would look like, or if she would regain movement in her tongue. We weren't sure where the cancer was, down her throat, in the lymph nodes, etc.
After her VERY LONG procedure on Tuesday, we started receiving good news after good news. They got all the cancer out, it had not spread down her throat. Her trach was replaced on day 3 with a smaller one because her swelling was going down. She did not have to have skin and tissue taken from her leg since her arm is so thin they were able to just close the skin. (she's very petite!!) Her pathology report came back that the lymph nodes were fine. She will not need chemo or radiation! Which made her smile. (well...my sister said it made her "half" smile!) The cancer is completely out of her body. Praise the Lord!!!
She is out of the ICU now and her trach was removed when she got her room on the floor. My dad said she ate a whole bowl of soup, and had ordered oatmeal for breakfast!
Everything has gone exactly as we had hoped. Please continue to keep her in your prayers for pain management and complete healing.
I am completely amazed at the Dr.'s and the ability to take out part of someone's tongue and replace it with their arm! It completely boggles my mind. But I am very thankful!
My sister and my dad have tirelessly been by her side the whole time. And once again, I have been reminded how important family is, and how grateful I am to have such a close and loving one.
I guess I underestimated how many people read my blog that I don't know about! I recently found out Kadie one of my grandmother's nurses at the nursing home reads it to check up on our family! So, Kadie..since I can't come see you guys with Kendall this week, please spread the word about my mom. And as always, thank you so much for the loving care you give my Nana daily. We love you!
I have lots of updates on Kendall, and pictures to share in the next few days...but my computer time is limited right now :)