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.