4.12.17 When She Sleeps

Last night Aimee fell asleep pretty quickly and slept through most of the night. These pictures show how she was this morning! She has been visually engaged, chatty, and dancing. 

So, sleep. We are pursuing it aggressively for Aimee's sake. These hours awake late at night, during the night, early in the morning are holding her back. This has been the discussion in recent appts. Yesterday in our Epileptologist Neurology appt and last week with Neuodevelopmental, we considered different options. It seems like with an abnormally working brain, typical sleep remedies (like typical remedies in general) are not sufficient. We've tried! 

From here, we will have to go back to meet with the Sleep Pulmonologist to consider effects on bipap settings. We may need to also meet with the Sleep Neurologist to make the final choice of dosage for a new medication. We will use a seizure medication that has sedative side effects. Hopefully we will eventually be able to replace one of the lower dose seizure meds that she is already using, though the Epileptologist would prefer to wait until after puberty is finished before making extra changes. 

Yesterday, we were finally able to discuss the extended EEG Aimee had a few months back. I had gotten the impression from the Attending Physician that this EEG was the most clear of any that Aimee had previously had. She did not have any active seizures while hooked up and I actually thought this might mean lowering medications. Yesterday I was put back in place. The Epileptologist said that the EEG showed an extremely high seizure risk and we are to continue treating any extended or clustered movements as seizures. Darn.

With Neurodevelopmental we talked more about the bowel difficulties. We have pretty much reached the end of our options, aside from a surgery that is not likely to help much. I am praying that they think of another idea fairly soon though, because it is just getting more time consuming, less effective, and more messy.  

 

Last week we also met with an OT to have Aimee fitted for elbow braces. I was really thankful for the real life understanding that this OT provided. Aimee wrings her hands, plays with her hands, waves her arms, and sleeps with her hands under her chin. The OT mentioned that we may need to use one brace during the night and one during the day, contrary to the recommendation of the Rehab Doctor, so that Aimee can still get her hands together for stimulation and comfort. We had to have a special custom brace made for her left arm as the angle is much tighter. It is good that we went forward with these now before more movement was lost. We should be able to go in for a final fitting for these braces in a few weeks.

Other exciting news? This week we were able to attend church again! Finally the sick season is ending and we can begin to venture out to the more risky places. Thank you Jesus for Spring!