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Kayla's Story on the MDA Jerry Lewis Telethon

Posted Aug 13 2009 7:59pm
Well, as you can tell from my lack of journal entries in the last 5 months, life has been busy. So much has happened in the last 5 months that I’m not even sure where to begin.

It's hard to believe that Kayla has had her trach out for over 6 months now. Although the surgery was a bit traumatic, she is healing nicely and the trach site closed within the first month and a half. She still plays with it and seems puzzled that it’s gone. It’s been a part of her since she was 2 months old. When I ask her, “Kayla, where’s your trach?”, she’ll point to her neck so she is still very aware of having had it. Now at night when she is sleeping, I just sit and watch her breathe, reveling in the pure miracle of her life. I think back to how the doctors gave us the option to pull her life support. That was such a scary time and to see her now, it’s sometimes hard to remember all the stress we were under back then.

In June, Jeff and I took Kayla back to Baltimore for an early 2nd birthday and celebrated with both of our families and friends. My brother and his wife Dawn came with their kids and my cousin Laura brought her daughter Elizabeth and then on Jeff's side, everyone was there including a bunch of Jeff's old friends. This was the first time that most of Jeff’s family met Kayla so it was a very emotional day for everyone. It was especially sweet to see Jeff’s father, who has been struggling with Alzheimer’s for the last few years, meet Kayla for the first time. We were able to share a few videos of Kayla and let everyone into our world for a few minutes. Kayla had a blast at the party but was a little shy with all of the attention on her.

In July, our nieces, Shelby and Lindsay came out to visit for a couple of weeks. It was so fun having them here but it went way too quickly. They helped us plan and prepare for Kayla’s 2nd birthday. Two days before Kayla’s birthday, Kayla took 13 independent steps (with her braces on) across our TV room. Every day she gets stronger and stronger.



Today, she is able to walk with us just about anywhere by holding our hand. She gets tired quickly so we always have to have our stroller handy to give her breaks but it's truly amazing have her walk with us. Thank god she's walking now because if I had to keep carrying her for much longer, my back would break! :)


For Kayla's 2nd birthday, we had a pool party and celebrated with a bunch of family and friends. It was fun seeing Kayla get excited about opening her presents. What a huge change from last year when we were just beginning to help her to sit upright. Speaking of changes, Kayla is now 3’3” tall and weighs 38 lbs. She looks like a 4 or 5 years old now. No one can believe that she’s 2 and was a preemie. She definitely has the Vittek/Harvey genes.

In August, the MDA brought over a television crew to our home to follow up on last year's story for this year's 2007 MDA Jerry Lewis Labor Day Telethon. Kayla was freaked out by the camera and spent most of the time crying and looking away from the camera. We got a few shots of her smiling and dancing but luckily the crew was skilled at editing and the video came out really nicely. Here a link to the final video that was aired on this past Labor Day.



September was the craziest month ever. We took Kayla to Washington State for a wedding of a good friend of ours. We had a blast and took Kayla sightseeing to all of the local waterfalls in the area. The wedding was located very close to the gorge. What a beautiful area! It was so fun having Kayla with us. We were so excited to try out our hiking back pack but quickly realized that Kayla was already too big to fit in it. Moments like that make us realize how much we have missed over the last two years. After the wedding, we rushed home on Sunday to be interviewed live on the MDA Jerry Lewis Telethon. They aired Kayla’s story the night before and then interviewed us that day. We had Kayla with us, but she was pretty cranky from traveling and she had a pretty hard day. Overall, it was an amazing day and we raised over $800,000 for the MDA Sacramento region alone.

One week after the telethon, we took our first vacation in over 3 years and we took Kayla to Cabo San Lucas, Mexico for Jeff’s 42nd birthday. We had a blast and spent most of the time relaxing by the pool and eating. We stayed at the Sheraton Del Mar. The accommodations were nice and we had a room with a separate kitchen, bathroom, living and dining rooms overlooking the ocean. That week flew by and just didn’t seem long enough. This was the first time we had both just stopped to breathe and relax together. Unfortunately, Kayla got sick while we were there so it wasn't all down time. We could have easily stayed for at least another week but I had to get back to work.

At the end of September, I was invited to speak at the annual family conference on myotonic dystrophy held in Manhattan Beach, California. This is the conference that we attended one week after we got Kayla’s diagnosis in 2005. It was so nice seeing all of our friends and catching up with everyone, most of whom we hadn’t seen since last year’s conference. I also had the pleasure of finally meeting my fellow board members for the new Myotonic Dystrophy Foundation. I was asked to be on the board at the beginning of the year and have been helping to get the foundation up and running in my spare time, which I don’t seem to have enough of these days. We are planning on launching our new website for the foundation at the end of the year. I just received a small grant from the eBay Foundation to help us build out our community development program so I'm excited to get that going. Thank you eBay! If you would like to make a donation to help fund medical research, go to the "Our Links" page and click on the donation button and then select the 'Kayla Vittek Fund".

In October, we took Kayla to the NICU or Special Care Nursery reunion. We got to see all of our old friends, nurses and doctors from Sutter Memorial where Kayla was born. It was a fun day and Kayla seemed to have a blast. It was great walking Kayla into the NICU and PICU and seeing the shock on everyone's face. No one can believe how great she is doing.

In the last month, Kayla has really improved her balance and is now walking all over the house by herself. It took a couple of months for her to gain the confidence to take off by herself, but now we can’t seem to keep track of her. Every time I turn away, she runs off into another room. I think she enjoys running away from us and being independent. Kayla is still wearing AFO’s (Ankle Foot Orthosis) or braces which will most likely be part of her life forever. Most kids with myotonic dystrophy wear them to keep their feet flat. Kayla has a tendency to go up on her tippy toes and without the AFO’s, eventually, her heal cords would shorten and she would need a heal cord lengthening surgery to correct them. We are doing everything we can to avoid that so she wears her AFO’s most of the day now.

Kayla has had a bunch of colds over the summer as we have gotten her out of the house more and more to mingle with other kids. It’s tough because we want to protect her from getting sick since her lungs are still very weak and it takes her a long time to fight off a cold but we have to balance that with wanting to help her socialize with other kids. It’s always a tough call cause it seems like such a great idea to get her out and about until she’s sick and then Jeff and I end up staying up half the night giving her breathing treatments and pounding her back to help loosen up the gunk. I have a feeling this will be a lifelong battle. UGH!

Kayla has really taken off with learning and she now knows over 60 ASL (American Sign Language) signs and says around 22 words. Kayla was recently tested for her level of speech and came in at 18 months. She is currently 25 months (adjusted for prematurity) so her speech is about 7 months delayed. She makes up for that delay in other areas though. Her test results for comprehension came back in the 32 month range. So she’s 7 month behind in speech and 7 month ahead in comprehension. I guess she breaks even then, huh? We are so pleased with these test results because with her disease, we expected the speech delays but never expected her to test so well in comprehension. I guess signing with her has really made a world of difference. If anyone else is interested in purchasing the videos that we use to help teach Kayla signing, you can go to www.babysigningtime.com or www.signingtime.com and they have 15 videos that Kayla absolutely adores. It’s all she wants to watch.

Kayla knows so many new signs; it’s hard to keep up with all of them now that I’m working full time. Here are a handful of the words she knows now: cracker, ice cream, want, book, hungry, apple, cheese, cereal, candy, help, fish, cheese, hot, like, boy, girl, baby, signing, time, dog, cat, bear, horse, pig, fish, puppy, butterfly, flower, shoes, hat, coat, pajamas, brush teeth, wash hands, potty, please, thank you, sorry, boat, car, home, me, love, hug, ball, play, all done, more, again, stop, orange, red, yellow. I know I'm missing a lot.

Kayla will be going in for surgery soon to repair her feeding tube hole which hasn't closed on its own. Every time she drinks milk or any fluid, she leaks out of her g-tube hole. It's pretty crazy to see milk coming out of her stomach but I guess things could be worse. She will have surgery to repair that and an umbilical hernia which happened when she initially had the g-tube put in at 2 months of age. Surgery is always a risk for Kayla since patients with myotonic dystrophy are at risk for complications with anesthesia. We have a friend who died after complications so even a minor surgery like this is a little scary for us. I'll let you know more about the timing when I hear back from the surgeon.

Anyhow, that's all for now. Thanks for keeping up with Kayla and for being so patient with my delay in updating Kayla's journal.
Hugs & Kisses,
Lisa
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