Tuesday, August 28, 2012

1st Day of School and Selah’s Sleep Study

Cooper and Conner’s first day of school is today.  We visited the classroom yesterday, and both boys were showered with attention and affection from their teacher, their occupational therapist, their speech therapist, and their physical therapist.  I know they’re going to soar at school, but I’m sure going to miss them.  I couldn’t be more grateful for the team of teachers and therapists who will be working with Cooper and Conner.  God’s hand is all over these school details, which, of course, gives me great peace.




Conner got his PICC line removed yesterday—WOOHOO!!!  His labs look good, but his IgG levels are still low, which indicates an underlying immunodeficiency.  He had 15 ml’s of blood taken yesterday for more labs, and then he’ll have to return next week to get even more labs drawn.  Conner’s feeling great and completely back to his normal self, which we’re all so grateful for.


Selah’s sleep study is tonight.  I’m really not looking forward to it, as I don’t think either of us are going to get much sleep.  We must arrive at 7:30PM and plan to stay until between 5-7AM.  The sleep study is done at Dell Children’s Hospital in their sleep lab.  Selah will have all types of electrodes stuck to her, which I’m quite confident she’s not going to leave in place without a continuous battle.  Since Selah doesn’t even sleep much in her own house, in her quiet sleep chamber for a princess, where she has a room all to herself with a HEPA filter and fan to drown out all disruptions, I just don’t have a very good outlook for this sleep study.  Basically, they’re just doing the sleep study to rule out seizures, apnea, and any other common forms of sleep disruption.  The sleep specialist believes it’s neurological (since Selah is missing the section of her brain that connects the right and left hemispheres), but, unfortunately, there’s not a “fix” for that. 


The sleep paperwork states that only one person may attend the sleep study with the child, which would be me.  The paperwork also states that a chair will be provided for this person, so plan to bring a pillow and blanket to try to make the night more comfortable.  I never sleep well in a chair regardless of whether I have a pillow or blanket.  The paperwork also states that Selah should  not bring any live animals with her to the study.  I kid you not.  I’m assuming they had to write this in the rules because someone actually brought a live animal with them to their sleep study in the past.  Crazy.


I would GREATLY appreciate prayers that Selah would sleep well and that I would, too!!!  Pray that Selah will be a perfect sleep patient, that she’ll leave her electrodes alone, that the technician will be able to gather all of the data necessary, and that the study will be successful and helpful in determining how to help Selah sleep better.  Thank you!!!

No comments:

blog comments powered by Disqus