Kayla has hit some new milestones again and I just couldn't wait to tell you about them. On Friday, Sept. 15th, in a moment of me feeing stressed and overwhelmed, Kayla looked up at me from her highchair and said "Mama". My whole world stopped at that moment and I scooped Kayla up and held her until I could stop crying. It was such an overwhelming moment of joy for me. That day she started making typical baby sounds like "ya ya ya ya ya" and "ba ba ba ba ba". Up until that moment she had only made squealing sounds and said the word "up" when she wanted to be picked up. On Monday Sept. 18th, Kayla said the word "Dada". Since that time, every time I pass a picture of Jeff in our house she says “Dada” It is so adorable. Now she is making a bunch of repetitive sounds and it seems she is on her way to real communication. It is such a miracle that a baby who didn't even make one sound until she was 5 months old, is now at 14 months old, beginning to speak. Once again, Kayla keeps proving to us that she is determined to fight her disease. She seems to be on a great quest to catch up for all the time that she has missed out on while she was so sick in the hospital at her birth.
We have been teaching Kayla 'baby signs' since we arrived home with her last November. She finally caught on to a few and is now clearly signing 'milk, hi, bye, high five, eat, dog and big. When we ask her how big Kayla is, she raises her arms over her head and giggles. It melts my heart every time. On Wednesday, Sept. 27th, Kayla started signing the word 'More'. Now she is able to let us know when she wants more food or wants to continue playing with a toy or hearing a story. It is so amazing to be able to communicate with her in this way. Kayla has also learned to shake her head for 'no' so she can tell us if she's full or done playing with a toy.
Kayla has also learned to scoot herself backwards off of the couch and onto the floor. She stands by herself against the couch usually with a big grin that says "hey, did you see that?” She hasn't quite started couch walking yet but I think she is well on her way. She also hasn't gotten enough strength to crawl forwards effectively yet but she is able to get from point A to point B by rolling and scooting herself around. In physical therapy we are working on getting her up on all her 4's but she can't stay in that position for more than a minute or two before getting tired and collapsing to the floor. I think her body is so big now that her arms and legs have trouble supporting her weight. Every day Kayla is getting stronger and stronger and we are hoping that she will be able to get there soon.
On Sept 16th, we took Kayla to LA where I was asked to be a speaker at our annual conference on Myotonic Muscular Dystrophy. Kayla had been sick and in the ICU less than a week before, so we had to wait until the last minute to see if she was able to travel without her oxygen. Luckily one of our friends in LA offered to loan us an oxygen tank while we were visiting so we were able to make the trip. Most airlines don’t let you travel with your own oxygen so without the help of our friends we wouldn’t have been able to go. Many members of our chat support group were at the conference and they were amazed at Kayla's progress and strength. During the conference, we heard many heart wrenching family stories from other families with MMD and we learned what a toll this disease can take on a family both physically and emotionally. The age of onset of the disease can vary from birth to mid 60's and 70's. Some of the stories I heard, made me think of my brother Steve who died by his own hands 20 years ago. During the conference, I found out from my mother that Steve was born with club feet, a clear symptom of congenital MMD, although it can happen for other reason as well. Steve didn’t learn to walk until he was 2 years old and had to wear braces for a long time. I wondered if Steve had gone undiagnosed with MMD and was suffering in silence. So many thoughts ran through my head including 'how in the world did we end up here?". It still baffles me that after being a collegiate athlete and having most of mine and Jeff's life focused on sports, that now we are dealing with a degenerative muscle disease in our family. I really have to scratch my head sometimes. One of the strange things for me was that I have always watched the Jerry Lewis Telethon over the years and felt a bond with the kids and families who told their stories. I guess I just never imagined that we would be one of the families on the telethon one day. The one thing I do know is that we have made some incredible friends through this experience; one's that I may have never had the opportunity to meet without going through this myself.
At the conference, one of the world-renowned doctors, Dr. Ashizawa, who studies Myotonic MD was there as a speaker. He has dedicated his life to studying MMD and working towards a cure. He talked about the ethics of saving babies like Kayla who may go on to have severe brain damage and a life that is shortened by the debilitating effects of the disease. It really hit home for us how lucky that we are for Kayla’s continued upward progress right now. Although most babies who are born as severe as Kayla don't survive, those who do don't usually follow such an encouraging path. To date, Kayla still has the most severe levels of MD of any child we have met so far but yet she is doing so incredibly well. I feel blessed every single day to be in the position that we are in. Jeff and I both know that there is no one in the world who can tell us when her disease might begin progressing further so we have really learned to live day by day and enjoy every moment we have with her right now.
On October 7th, I took Kayla on her first car road trip to the bay area to see an old friend and to visit my parents, sister and nieces in Santa Cruz for the first time in over a year. It was so great to get out and travel with Kayla. I turned her car seat around to face forward for the first time so that I could keep an eye on her and also let her watch movies. I have a baby signing time video that Kayla loves to watch so we watched it over and over again. Every time it ended Kayla would look up at me with her beautiful brown eyes and sign for more. Part of the reason that I needed to keep an eye on her is because her new favorite thing to do is pull off her purple speaking valve (Passy-Muir Valve – or PMV) and then once that is off, she pulls at her trach tube. She has gotten her trach tube out now a handful of times so I have to keep a very close eye on her. Oh, the joys of having a trach!
On October 10th, I took Kayla to an outing with other some other special needs kids that go to the same Sensory Motor Gym as Kayla. We went to a farm where we played with farm animals and picked pumpkins. I added a new picture of Kayla with her pumpkin that is absolutely adorable. That day we also found out that Kayla was selected to be the Regional Goodwill Ambassador for Easter Seals for 2006-2007. We were so honored that Kayla was selected to represent Easter Seals in this area. We will be invited to several events throughout the year where Kayla will make appearances and I will get a chance to talk about her and how this disease has affected her and our family. On the 26th we have been invited to the Easter Seals annual dinner and Kayla will be officially introduced as the Youth Ambassador for the year. Easter Seals is the organization that we have Kayla’s physical and speech therapy through. They have been absolutely wonderful and very critical in Kayla’s current upward progress. WE LOVE EASTER SEALS!
Kayla is nearing 15 months old now and is getting so BIG! She weighs over 26 lbs. and is almost 3 feet tall. She is wearing size 2T to 3T clothes already. Everyone who meets her thinks that she is either 2 or 3 years old. It’s fun to see their faces when I tell them that she was a preemie and is only just over a year old.
Love to you all!
Lisa
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