Brown and Pink Polka Dots : The Sunday update

Sunday, February 1, 2015

The Sunday update

Last night was not as bad. I was only up for 1:30-3am with her and then up again at 6. This was the best night of sleep we have had all week!

However, today has been harder on her then yesterday. Yesterday my parents came over and helped out. Jillian wanted to show off for them. She did sit some but she wanted to move even though her lungs were not supporting her movement. A few times we had to make her sit on the couch. Part of yesteday's problem was that the steroids and neb meds were all kicking in. She just was not comfortable in her own skin. She had me hold her feet in the air for 20min yesterday because she could not handle them touching anything. She has chewed through 3 passys in 3 days. She was just on sensory overload and did not know how to handle it. She did the best that she could and did not start hitting until later in the night (having worked with many kids during sensory overload, I am proud of how hard she worked to make it work for her)

Today she woke up and was breathing hard. You could hear the wheeze and rattle. I took a voice memo with my phone and it picked up the wheeze and rattle. Brent got up early to head to Church. The roads were bad and the first way he tried to go was impassable and he had to find a different road. Part way to church he got a call that he was not needed to do sound. He then turned around and came home because of the roads (it is a half hour drive on a good day for us to get to church).

Brent came back and grabbed Jillian from her bed and we all curled up in our bed and watched America's Funniest Home Videos.

Jillian is retracting more today, wheezing more and her nose is running more. She spent 80% of her day on the couch coloring, watching movies or looking at books. When she did get up it was for little bits of time. She put her pump in her cart and pushed her pump around instead of wearing it. Her mood has been up and down today. We have seen some smiles and a couple of laughs. We have also experienced crying, screaming and a little girl who has really struggled to tell us what she wants and needs. Her fever has been gone today and her ear has looked better until tonight, now she has gunk flowing again.

Right now she is asleep. She fell asleep taking her 6pm neb and has been out since. Thats really strange for her.

Tomorrow we go back to the doctor. We will see what she has to say. I have spent part of my day working on lesson plans and getting stuff together for work so I have back up plans depending on how Jillian's week goes. Right now, she will at least be out of school a few more days. She needs to be breathing ok before I send her back to be with kids and germs. She needs to spend more then 80% of her time off of the couch before she goes anywhere but a doctors office. So we just keep chugging along.