Thursday, June 18, 2009

Kayla's Story for MDA Telethon Highlighted on Local TV Station - KCRA

As you know we recently had a television crew in from the MDA corporate office in Tucson, AZ to film a story about Kayla for the 2009 MDA Jerry Lewis Telethon in Las Vegas. Our local Sacramento TV station, KCRA (Channel 3/58), who hosts the telethon in Sacramento on Labor Day, came to interview us about this event and to capture some of the filming. Here is the story that aired in Sacramento on June 14, 2009:

When I know the exact time that our story will be air on Labor Day, I will be sure to post it here so you can watch and support the MDA and all of the families living with so many neuromuscular diseases.

We are so excited to be able to share our little girl with everyone and have already had several people we don't know in Sacramento come up to us to say they saw Kayla's story. I remember on the first telethon when Kayla was only 1, they told her story and I remember saying "I feel that Kayla is going change the world, one person at a time." Well, I think she's doing that. I feel so blessed to be her mom. It's a job that I treasure every single day as we don't know what Kayla's long-term prognosis is. All we can do is live in the moment and enjoy watching her grow up.

With Love and Hope,

aka: Kayla's Mom

Tuesday, June 2, 2009

Filming Our Family Story for the Jerry Lewis Telethon Today!

Well, today is a big day for us. The TV production crew for the Muscular Dystrophy Association (MDA) in Tucson, AZ, arrived in Sacramento last night and took us out to dinner at PF Changs. We had dinner with several of the producers and crew who have been doing this work for over 30 years together. Amazing! Chastity, from our local MDA office, joined us for dinner too. We had a great time getting to know them all and can't wait to begin filming today. The crew will be arriving with 7 people at our home in a few hours to begin filming for this year's National Jerry Lewis MDA telethon on Labor Day. They are here to tell Kayla's story. Our local news channel, KCRA, is bringing one of our favorite anchors, Adrienne Bankert, over at 10:00 am to also do a quick interview with us. She interviewed us when Kayla was one years old on the local portion of the telethon here in Sacramento in 2006. She is so fun and I can't wait to show her how far Kayla has come since then. Well, I had better jump into the shower so I can get ready but I thought I would keep you updated on what's going on in our lives. Never a dull moment. I'll write more about this experience later.


Monday, June 1, 2009

An Angel is Watching Over Kayla

On Friday, May 22, I started my day just like any other day the only difference is that I headed out to my new office instead of my home office. As I've mentioned before, I have been working for the last year, running the Myotonic Dystrophy Foundation out of my home. Well, we've grown so quickly over the last year that we were able to finally move to an office space. It's only about 2 1/2 miles from my home so the commute is great. I used to commute (for 4 years) down to San Jose, when I worked for eBay, which is a 145 mile commute. I'm loving the 2 1/2 mile commute.

Anyhow, I went to work and then took a quick break in the morning to go with Kayla to her 30 minute horse therapy session. I wasn't planning on going but something hit me that morning and I felt like I should be there. Well, not long after Kayla mounted the horse, Jerry, they took off around the arena with Doc at the lead. Doc is an amazing guy who has worked at this horse ranch for a long time. Kayla fell in love with him the first day she met him. He's amazing with kids and he loves his job, which is so evident from the enthusiasm and energy he puts into his work.

Well, the horse therapy is in a huge tent and the windows were rolled up since the weather has been so nice. Someone walked by the window with some sort of a cart behind them at the same time as Kayla went by on the horse and the horse, Jerry, got spooked. Jerry started bucking back and forth and Doc was trying with all of his might to pull him back down. Doc eventually got the horse down but then seconds later, he bucked up again and then took off, riping the rope out of Doc's hand leaving severe blisters on his hand. Kayla went flying backwards and landed flat on her backside of her body almost evenly from her head to her toes. I was on the side watching in horror and ran as fast as I could out to where Kayla was lying down. It felt like a slow motion movie trying to get to her. Everyone rushed in to help and we stablized Kayla and then called 911. The paramedics got her in a neck/back brace and put her on a stretcher and rushed her to the ER. Kayla was amazing and only cried for a little while although she was a little scared in the ambulance as I had to ride in the front.

Anyhow, to make this long story short, Kayla ended up having an IV put in and then had contrast dye added to her IV for a CAT scan. Kayla was so brave as she went into the tunnel. I held her hand and she layed really still. She always amazes me with how brave she is. I wonder if that were me at 3 how I would have handled the situation. Anyhow, they scanned her from her stomach to the top of her head and after about an hour and a half, the results came back that nothing was broken and that Kayla could be released.

Well, the fun doesn't end there. I headed back to work to try and catch up from the time that I was out and at 8:30 pm headed home for the night. I got home and put Kayla in the tub and then went downstairs for a quick snack before bedtime. Kayla poured water on her nightgown so Jeff pulled it off and then he and our friend David took off to drop our cars at our service center for maintenance. Moments after they left I opened the gate to go upstairs and then reached out to pick Kayla up and she slipped in water that she she spilled and landed directly on her the back of her head. The sound of her head hitting our tile was so horrible, kind of like what you would imagine would sound like if you dropped a melon. I was in total shock. I scooped Kayla up and held her in my arms on the stairs and rocked her back and forth. She kept crying which is so unusual for Kayla as she's always had a really high pain tolerance. I walked her up to her room and sat in her rocking chair trying to calm her down when I notice that my arm looked different. It was yellow, sort of like Jaundice, if you've ever seen someone with it. It was a funky yellow color. As I looked closer and lifted Kayla's head from my arm, I realized it was smeared blood and then I noticed that blood was all over my arm just below that. I trained as an EMT 10 years ago but at that moment my heart started racing and I panicked. Seeing blood coming from her head was more than I could handle. I raced downstairs with her in my arms, grabbed my keys to the car and then realized as I got outside with her that Jeff had taken our car to the dealership. I ran back in and back upstairs to grab a phone and called 911. The ambulance arrived just behind Jeff and David so as they arrived back home. Jeff and David later told me they saw the ambulance and said to each other, "it can't possibly be for Kayla". Well, they quickly realized it was for her and once again, we got Kayla strapped down, this time she was put in her car seat on the gurney and they taped her head to the car seat to keep it stable. We rushed her to the ER again. The ER was packed at this point and they dropped us in the lobby. I was a wreck but was trying to hold it together for Kayla. They took us back pretty quickly and assessed Kayla's head. On the way to the back I ran into a nurse that was still on shift from the morning. Her eyes got so big when she realized it was us AGAIN. Kayla had a huge head wound that looked more like a bullet wound than a long cut. We held Kayla down and they gave her a topical to numb the pain. Then they proceeded to put 6 staples in her head. I think we were all in shock at that point. We made it home by 1:00 am, completely exhausted.

The next morning we went downstairs for breakfast and I put Kayla directly in her high chair. I gave her some grapes, which she eats several times a week and she proceeded to inhale a grape. She looked up at me and then started drooling and trying to breath around the grape. I quickly went behind her in the high chair and did the heimlich maneuver on her twice with no success. I then ripped her out of her high chair and stood her up against me and did it again. It took a couple of seconds but then the grape shot out of her mouth. I grabbed Kayla and took her upstairs to the TV room where we have huge couches that are soft and cushy and we sat there in our pajamas for the next two days barely moving. Jeff brought us meals so we didn't have to go anywhere. I just held her and didn't want to let go. We watched video after video and just vegged together.

I know that an angel is watching out for Kayla. Within a 24 hour period, she had 3 life threatening accidents and was totally fine. In fact, Kayla acted like nothing had really happened although she did tell us several time over the weekend what happened to her. She would sign and say 'Horse', then 'Fall'. She also was signing 'Fall' then 'Hurt', then 'Head'. She is such a trooper.

Well, I need to run but I thought you might want to know how things were going.

More later.