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.

We're Expecting!

It's A Girl!

In early November, we decided to try in-virto fertilization for the 4th time. We were shocked when we found out it had worked. The road has been a bit bumpy, but has smoothed out and things are going wonderfully. My ultrasound tech was confident that I'm having a girl and I have felt, since the beginning, that that is the case. We are having trouble picking just the right name for the little one, but it will come to us. Here's a picture of me at just over 12 weeks, with a little baby bump.




I have also included pics of the ultrasound. They are not crystal clear, as I don't have a scanner and used my camera to duplicate them so I could post them. The second one is a bit harder to read, but so cool. I get 3-D ultrasounds every once in awhile, as I'm seeing a perinatalogist (a high risk doctor).


The baby is due July 22. I am trying my hardest to help Aulton prepare to share his mother. We talk about the baby all the time and how lucky she is to have Aulton as a big brother. We read books and talk about all the things babies do. I'm so excited to experience the joys of being pregnant again (now that I'm in my second trimester, of course), as well as raising another child.

Christmas, Christmas, Christmas

We went to Elko, Nevada to celebrate Christmas with my parents. It was sooo cold, but Aulton didn't seem to care. Mike made a little track around the front yard to pull Aulton's sled on. Mike also would pull the sled around the neighborhood. I hate the cold and snow so I just snuck out and snapped a few pictures, before heading back in to enjoy my hot cocoa and watch from the window.Aulton got spoiled for Christmas, but did not care. Last year, he was into opening presents, but not this year. It seems anytime we want him to do something, he wants to do just the opposite. So, depending on how much his attitude changes by this time next year, he may just get one or two presents and we will call it good!


My parents did get him a wonderful swing set, while they were here visiting for Thanksgiving. My father-in-law and Mike put it up, as my father ended up in the hospital for almost the entire visit. I'm thankful he is fine and for Elmer generously giving up a Saturday.
Aulton's birthday went much the same as Christmas. Even though Christmas Day was his actual 3rd Birthday, we celebrated on the 26th because he was just too tired. His cake was covered in Swiper (from Dora the Explorer), but he wouldn't even look at it, because we wanted him too. He did, however, partake.We had a wonderful time in Elko, watching movies, playing games, sleeping in (thanks grandma and grandpa), entertaining Aulton, shopping, eating, eating, and eating. It was truly a joyous holiday!