My "Heard"

Something very fun has been happening at our home lately. My children are filling the air with "ba" sounds. For Lyla, this is a typical sound. According to the "chart" that is supposed to tell me when every "normal" thing happens, babies typically start making "b" sounds between 7 and 12 months. It also says she is supposed to start shouting for attention. Umm, I guess she's ahead of the curve on that one.

Aulton, on the other hand, has never been able to make that sound. Myotonic Dystrophy gives children weak facial muscles, which explains Aulton's very kissable, chubby cheeks. The hardest sounds to make are "b", "m" and "p" because a person must bring their lips together to make those sounds. I have been consciously working with Aulton on producing a "b" sound since he was 14 months old. In fact, we work on it EVERYDAY by reading, "Brown Bear, Brown Bear." We also work on it in every speech therapy session. This probably doesn't seem like a big deal to the outside observer, but trust me, it is! This sound, combined with other sounds Aulton already makes, will eventually lead to words and I want so badly to know what my little boy is thinking.

I can't recall the first day it happened, but I remember hearing Aulton in the back seat, saying, "ba, ba, ba". I couldn't believe it. It made me so happy.

Around the same time, Lyla starting making the same sound. I don't know if one inspired the other, or if it was merely coincidence, but I'm so excited for and proud of both of them.

I love my little sheep. BAAAAA!

Where to Begin?

It has been seven months since I updated the blog. At first, it was because I was too busy to breathe, then I felt like it was too late. However, the new year is upon us and I thought an update was in order and possible. I'm working on getting Aulton's MDA Stride and Ride page up and I like to include this address for those who would like to check on his progress, so I can hopefully fill you in on those changes, as well as many of the other things that have happened to us during the past few months.

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.

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).

Sleep Study

Aulton is scheduled for a sleep study next week at Banner Children's. I am excited that we found a great doctor who may be able to help us with this on-going problem. It's been over a year that Aulton has been waking in the middle of the night for no apparent reason. After doing a bit of research, I found out that congenital myotonic muscular dystrophy kids have problems with sleep apnea and with periodic limb movement (plm), which is similar to restless leg syndrome. The difference is that it can also affect arms, and in rare instances, other muscles groups (ie bowels, etc.). The sleep study is mostly being done to rule out apnea, which he likely doesn't have, as his airway and palate are not affected by CMMD (a miracle in and of itself). The doctor also feels his problem is related to PLM. He was up at 3 a.m. last night and didn't ever go back to sleep. For those of you who know about RLS, it is very uncomfortable. For Aulton, it seems, it is painful enough to wake him and keep him awake. A diagnosis will be helpful, but most children with CMMD don't start experiencing PLM until they are adolescents. The doctor is unsure of how, or if, we will be able to treat it. The medication they use is not recommended until children or 15 or 16. It is much too strong for a three-year-old. The reason I'm posting this is because I would appreciate it if you would keep him in your prayers. I will be happy with a confirmation of the problem, but happier if he doesn't have to suffer in pain for the next 12 years, especially since he can't tell me where it is hurting. Thank you!

Little girl update

Unfortunately, I'm growing a very stubborn girl who won't let me see her face. But, I think she just wants me to be surprised by how beautiful she is. We had our third trimester ultrasound two weeks ago. She is in the 70th percentile for her gestational age, so just a little over 3 pounds. The funniest part about the ultrasound was the size of her femurs (thigh bones). They are measuring in the 90th percentile. She still looks completely healthy and we feel very blessed to have this little "dancer" coming to our family. I think we have settled on a name, as well. Lyla Elizabeth should be here in about 10 weeks. *disclaimer-name is subject to change :)

Orthotics update

Aulton is still doing incredibly well with his night splints, so much so that we have started to put him in his new taller orthotics for half days. I don't really like them because people stare at them and it is so much more difficult to get him in and out of carts. He falls more frequently and tires more easily. However, they are working. He is walking with flat feet more often, even when they aren't on. I still haven't sent him to school with them because I know they are uncomfortable and sometimes his teachers don't read his cues as quickly as I can, which is understandable given the amount of time they spend with him compared to the amount of time I do.

His sleeping problems have returned and we went to see a pulmonologist last week. As soon as insurance approves the doctor's recommended sleep study, we will get it scheduled. The doctor believes Aulton has something called periodic limb movement (PLM). It's similar to restless leg syndrome, but can happen in a person's arms and other muscles. I have read about it and this explanation seems very probable. The sleep study will rule out other things that could be causing his night waking. If it is PLM, no one is sure what steps we will take from the diagnosis. There are teenages with CMMD who suffer from PLM and take medication, however the medication is too strong for a child. So, we will pray that if this is the diagnosis, his doctors will be able to find something to help him get more rest.

A Blessing in Disguise

Last month at Aulton's orthotics appointment, we learned that Aulton's current orthotics (SMOs) were no longer "working." He walks on his toes all the time. In the beginning, the toe walking was actually a good thing: he was giving input to his calf muscles to make them work. However, he liked that input so much he decided he would become "my little ballerina" and tip toe 1oo% of the time, even in his shoes and orthotics. His heel cords are so tight his PT cannot stretch them without hurting her arm. So, the orthotist gave me several options; continue what we were doing, which would likely result in casting and surgery, get night splints and use the SMOs during the day, or get night splints and new, taller orthotics (AFOs). We opted for option three because it made the most sense and will be the most beneficial in the long run. The AFOs and night splints make it virtually impossible for him to toe walk, thus improving his pelvic, core and anterior tibia muscles.

I was pretty devastated, though. I knew the adjustment would not be easy and would likely be painful for him. Plus, a lot of other stuff was going on with him in school and therapy. I just felt completly overwhelmed. However, Aulton was blessed with an amazing personality. He is very easy going and the orthotist presented a plan that was quite conservative. We started slowly, we had Aulton wear the night splints only for a hour on the first day. Every night we increase the duration, which increases the stretch. Last night we were able to get nearly 3 hours out of him before the crying started and broke my heart.

We will see the orthotist next week to determine whether the night splints have created a great enough stretch to make wearing the AFOs during the day beneficial.

While all of this has been challenging, something very good (besides the longterm benefits) has happened. Aulton has gone back to sleeping through the night. It is a struggle to get him to fall asleep when he is so uncomfortable, but once the splints are off, he is out and out for good. This morning and one other morning this week, he woke in the 4 o'clock hour. In previous days, he would have stayed up until Mike or I went to get him around 6 a.m. This morning, however, he went right back to sleep and slept until 6:20. It's practically a miracle. His OT at school even commented on how much better Aulton did in his session. I told her it was because he was getting an additional 2 to 4 hours of sleep than he used to. Obviously, he is more alert than he would have been operating on 6 or 7 hours of sleep. As you may recall from a previous post, he has been waking up between the hours of 1 and 3 a.m. as if it was time to start the day.

Hopefully, he will continue to sleep well and he will continue to adjust to his new orthotics.

Big Changes

Aulton has always been a really busy kid. He has had various forms of therapy since he was six months old. When he started school, his in-home/private services were discontinued, as he receives therapy at school. After he turned three, however, he was eligible for a state program called Long Term Care. He did not qualify for this program, which helps pay for medical expenses and therapy, when he was 18 months old. Now that he is three and is still delayed, he did qualify and we are going to start having private therapy again. I'm so very excited to start these services again. None of therapies will be at home, as Aulton pretends to fall asleep when the therapists come over. We will be doing therapy at clinics and in different locations to keep things interesting for him. If we go somewhere for therapy, it doesn't seem like it is a much work for him. Here is a look at our schedule:

Monday: school 9-12, speech 2
Tuesday: school 9-12
Wednesday: swimming (PT) 11:20
Thursday: school 9-12, music 1-2
Friday: speech 8-9, gym (PT) 9:30-10:30

He is also going to start hippotherapy (horses) soon and will use it for occupational therapy. I'm not sure what time will fit in with the busy schedule, but we will make it work.

At school he gets speech on various days, physical therapy on Mondays and occupational therapy on Thursdays. So, he will soon be getting 8 therapy sessions each week. We are so blessed to have these services in our lives.