Christmas 2010

Christmas Fun

Grandad comes over every day to read books and nursery rhymes with Kendall.

Her vision teachers brought a fun activity over and Kendall got to play in the snow!

Daddy gives Kendall rides on his shoulders every night and it returns huge belly laughs and squeals.

The hammock swing that sits in the MIDDLE of our living room still provides much entertainment to Kendall. (mostly because it is so hard for me to get her in it...she thinks that's pretty funny)

And the iPad which went kaput on Saturday and had to be replaced (ok...it ended up being the outlet we were charging it from, but I got to spend 3 hours on Saturday night at the Apple store) is programmed with Christmas greetings and other things to say. And lots of Christmas music and stories.

This Christmas Kendall is enjoying so much more than she was last year. She's fascinated by the Christmas tree and grabbing ornaments from her kidwalk, and loves all the Christmas treats she's able to eat now.

We've had beautiful weather the past several days (in the 80's) so we've taken lots of walks and enjoyed talking about the "crunchy" leaves and nice breeze.

It helps that her sugars have been under control. She's much less irritable and the pump has really given us the freedom to feed her whatever we want off of our plates. We've even made a few ice cream runs during the day!

Leaving all the test results and doom and gloom attitude behind has certainly made room for lots of living! Every day is a gift around here. Kendall loves her visitors and enjoys having family and friends around (it just has to be on her turf!)

Her latest thing way of telling us she's overwhelmed is by pulling her hair and grabbing her glasses. It is driving me absolutely crazy. I didn't think she was going to have sensory issues since there's always chaos around our house with the dogs and kids around, but it's looking more and more like she might. ugh!

My mom is doing great and gaining her strength. She's been baking cookies the past few days and walking on her treadmill! Hearing her speak is music to my ears. She only has a little impediment which will surely go away after the swelling goes down. She's one tough cookie for sure!

We're excited to spend Christmas with our entire family, celebrating the year and each other.

Back to School

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?!)

Metabolic Geneticist and Mitochondrial Disorder.

We saw our Metabolic Geneticist today.

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.

Santa

I haven't mentioned nursing in a while...we recently lost hours, then recently lost a nurse, so our extra help during the week has been cut by over 50%... and with Justin traveling ALL THE TIME, it has been an adjustment for me...but I'm dealing.

Anyway, our nursing agency,Vicvicare Health Partners, (owned by a few friends I grew up with) has been a huge blessing. They have such kind hearts and always go above and beyond to make sure our family is taken care of. I like to think I get special treatment, but I know they do the same for every family. They had a Christmas party last week complete with yummy food, a professional photographer, Santa, crafts and activities for the kids and siblings. They also had gifts for each of the children under the tree...Kendall got a toy cell phone and lap top which has been a big hit around here! They take amazing care of their nurses, which I believe is why they have some of the best too. And they donated $10,000 to Camp John Marc, a camp for medically fragile children. It was a great evening. (and I enjoyed seeing my friends and their families too!)

New Accessory

We did it! We started pump therapy on Friday. I loaded the cartridge, placed the site, primed the cannula....all by myself. (with the Diabetic Educator and Justin looking over my shoulder)

Kendall doesn't seem to mind it. And the thing is absolutely amazing. I don't know why we didn't start it sooner! (guess I said the same thing about the g-button too!)

No more shots, just sugar checks and inserting the needle every three days. So far it seems doable. She's only had one low in the middle of the night, but other than that it's been smooth sailing since Friday. Tomorrow we will adjust the settings a bit so hopefully it will be pretty fine-tuned by the end of the week.

Justin's traveling so I'm a little nervous to do it on my own tomorrow...but I'm sure I will manage.

No more coolers, syringes, and glass insulin bottles everywhere we go! Just a few little pushes of a button and Kendall has her dose calculated based on her ratio and blood sugar correction. All we have to do is confirm the dose and push OK!

We can even custom set the alarms to her favorite ring tones! Isn't technology amazing!?!

Update on My Mom

This week has been one of many answered prayers for my family...

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 :)

My Marathon

"Only those who will risk going too far can possibly find out how far they can go." ~TS Eliot

I guess this post could go two different ways...I could tell you all the things that went wrong in the marathon...my knee situation, the freezing-cold-windy weather, my over-hydrating resulting in way too many port-o-potty breaks, the long 5 hours it took to finish...

Or I can tell you about all the beautiful things. The friendships I made throughout the training, the unbelievable support I received from my family at mile 10, 20, and the finish line, and from my amazing friends on the last stretch before crossing the finish line. The fact that I never hit "the wall" and ran the entire time.

The emotional roller coaster one goes through when putting your body through such extreme exercise is indescribable unless you've experienced it yourself.

Of course this to me was a metaphor of life. Continuing to put one foot in front of the other even when you don't think you can. Relentless forward motion until you see the finish line. I'm sure I don't have to point out the symbolism.

But I did it. It's done. I'm a marathoner. Probably will stick to running halves for the rest of my life, or maybe a few sprint triathlons....but it was a great experience. One I'm glad I did. And one I'm glad is over!

Living.

So over the holiday weekend I did a lot of soul searching. Guess most of it was done while drinking wine and decorating my entire house inside and out (by myself) for Christmas. I'm not a huge holiday decorating person. Honestly, I couldn't care less if we even had a tree up...but since I do have two children, it's not really all about me :) So I sucked it up and got into the attic, sorted through all of our holiday junk and decorated the stinkin house. (with a happy heart of course)

The little twinges of anger about Kendall not being "normal" always sneak up on me around the holidays. This one was a little harder than the last few because we're in a new ballgame now. I'm angry at myself for not celebrating her life more when we didn't think she had anything progressive. For not living in the moment and being thankful that things weren't worse. For complaining about her inability to sit unassisted, or hold her head up for a picture...it seems I was always wanting her to do more or work harder.

My mindset of finding Kendall equipment, or adapting things to work for her and enable her to enjoy life hasn't changed. I still plan to do all of those things. But the way I view life has changed. Between my mom's Cancer and Kendall's newly found Mitochondrial disease, I've been reminded that there are things in life way outside of our control. I choose to live my life happy. Worrying and complaining and seeking out an unattainable rainbow makes you miss the little things. Moments like Kendall grabbing a banana off her tray and taking it to her mouth. Or Kamden teaching himself a new song on guitar in his room where he thinks nobody can hear him. I want to pay more attention to those everyday things and live in the moment. I can do it. It will just require me to change the way I think about things in order to break old habits.

We had a family trip to the zoo...and loved it. We went to a friend's house for dinner...and Kendall got lots of attention. I've decided not to let this latest diagnosis define us. If anything, it has instilled in me a desire to do more as a family and spend more time enjoying Kendall. Just the way she is :)

I have a meeting today with the school district regarding Kendall's upcoming birthday and transistion out of ECI and into PPCD. Should be interesting. Oh, and a marathon this Sunday...should be even more interesting! Wish me luck!