LYLA
First, our little girl was born. We are so excited to have Lyla Emily in our family. Lyla was born on July 10, 2009, 12 days before she was due. I was so thrilled when my water broke because I thought I was going to die from the heat and the doctor had told me two days earlier that it would be a few more weeks. During the last month, I would take Aulton to the nearby supermarket just so we could walk down the freezer aisle. Being 9 months pregnant during an Arizona July, while carrying a 40 pound little boy is not fun, but, of course, I would do it all over again in a heartbeat. Her birth was EASY! I was only in real labor for a few hours (the entire process was only 14 hours). I dilated from a 4 to a 10 in 20 minutes and she literally slid out. After 26 hours of labor with Aulton I kind of deserved to have an easy one. The most special thing about that day is that she was born on Mike's sister, Emily's birthday. Emily, who is in Heaven, sent Lyla to us on that very wondrous day.
Lyla started to get colic around 2 months, which is something that I have never experienced before. Aulton was a very "easy" baby, who rarely cried. It was exhausting. At 3 months, 1 day, it was like a switch was turned off and the crying decreased. I could put her down and actually go to the bathroom without Lyla completely losing control
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She has added so much to our family. She is very funny. Right now, she is sitting on my lap running her feet over the chunky, blue bracelet I'm wearing. She is a bit high maintenance, but easy going when it counts. For example, she sleeps great in the car, which is important with our schedule. She is a great eater and is generally very jolly.
She is growing up very quickly. She rolled over "early", started crawling already, babbles like crazy and is sleeping through the night (finally!).
OUR NEW HOUSE
My parents, who plan to move to Phoenix upon retirement, bought a house in Gilbert as an investment and are so kind they are letting us live in it. Of course, we pay the mortgage and utilities and everything you normally pay for. We really needed to move to get Aulton into a school in Gilbert and have a house with a pool for his physical therapy needs. We love the new house, it is bigger than our other house and a better set up for our little family. We have a great tree in our front yard that actually changes colors and loses it leaves, bringing me a little bit of the Colorado, Wyoming and Utah Autumns I miss so much.
AULTON
Aulton continues to be a huge blessing to our family and brings me so much joy. He just had his 4th birthday on Christmas. As I have been reflecting on my life, as I often do during a new year, I realize how lucky I am to have had him be a " baby" for so long. Of course, I enjoy watching Lyla reach milestones and thank God everyday that she is "healthy". Aulton's journey has not been easy and it won't ever be, but every accomplishment means so much because he works so hard for all of them. I also get to spend time working with him because things don't come as naturally to him as they do to a typical child. Sometimes, it is very hard work, but most of the time it is fun and always rewarding. I really cherish his milestones because the don't come quickly or easily.
He attends preschool everyday and he absolutely loves it! I adore his teacher and she doesn't underestimate his abilities, which is invaluable. His peers are similar to him, in that most of them are fairly ambulatory, but have limited speaking abilities. Gilbert School District is well-known throughout the state for having excellent special needs programs and our lives have been blessed by this change in Aulton's life.
At any point in the year, Aulton attends between 4 and 7 therapies each week outside of school, where he also recieves PT, OT and speech. Right now, he only has four (two speech, swimming and horseback riding, which he uses as OT). He receives music therapy through ASU, only when school is in session. So, we are waiting for that to start again and we decided that our Fridays were getting too busy, with speech, school, gym and horses. So, we have decided to discontinue attending gym for awhile, especially since Aulton's gross motor skills are his best area.
Aulton has made great strides in speech. He uses a system called PECS (I'm not sure what the acronym stands for). He uses little cards with pictures to communicate his very basic needs, ie what he wants to eat, what he wants to do, etc. I'm using this program to potty train him. My goal is to have him potty trained by the time he is 5. That way, if it happens earlier it will be a nice surprise. It is difficult to toilet train a child who doesn't speak. I will have to do another blog entry to explain how I'm doing it, if anyone is that interested. I change between 7 and 15 diapers each day. The other day, I changed 7 in 15 minutes. That was fun. It will be over someday...
From his speech therapy sessions, we have ascertained that Aulton knows all his colors, animals, body parts, most verbs and can answer "where" questions (example: does a bee live in school or in a beehive) He picks the correct picture 90 percent of the time. I'm working with him on numbers right now, as well, using the same types of "games" he does during speech.
To strengthen Aulton's facial tone, I do mouth and lip exercises with him everyday and he uses special straws once a day. This also needs extra explaining in a different blog entry if anyone is interested in the specifics.
Aulton has a few words and is attempting to verbalize more frequently. He also makes more sounds than he used to, which is definite progress and improvement. At his last neurology appointment, I asked his neurologist (who specializes in muscular dystrophy) if Aulton would ever talk. He said most CMMD kids talk between the ages of 5 and 7, so I'm optimistic.
Aulton's sleep has improved slightly, we have an appointment with a pediatric sleep specialist in March. His sleep study was not very valuable, as he was diagnosed with "unexplained insomnia." REALLY?!? (for all you SNL fans).
In short, everything is going really well for our family and I can't imagine how 2010 could be better than the previous year, but it's all about outlook and we plan to make this the very best year yet.
Thanks to all of you for your support of and prayers for Aulton and our family. His myotonic page will be up shortly and please donate if you feel so inclined. Researchers are so very close to a cure for myotonic and duchenne muscular dystrophies, but they can't do the work without the funds. (All donations through Aulton's page go directly to myotonic dystrophy research).
