Brown and Pink Polka Dots : Sleep Study and first real ouch

Tuesday night we had the fun of getting to sleep at Children's for Jillian's sleep study!

When we did Jillian's 24hr pulse ox test a few weeks back the doctor did not like something during the night and ordered a sleep study to be done.
Tuesday we met Brent for dinner in New Berlin (I had a mac and cheese burger that was amazing!) and then Jillian and I headed over to the New Berlin Children's clinic. We checked in around 7pm. They hooked Jillian up to everything a little after 8pm, and she finally fell asleep just before 10pm. She did fine with them putting all of the probes on her head but she flipped out when they put the pulse ox on her toe and the oxygen cannula in her nose. I just shook my head! Those are "normal" things in her world.
She woke up around 11:30 and cried for quite a while. Got back to sleep and then I woke up around 1:30 to them moving Olaf off of her face. Up at 2am to fill her milk and then up with her again at some point before 5am. I also woke up at some point during that time period to them coming in to do something. I got up at 5am and at 5:30 they woke her put by doing a prick on her finger to get blood for a blood gas test. We then got dressed and ready to go and we were out the door before 6:30.
I can say that night made me LOVE the new YouTube Kids app. Seriously if you have a child that plays on your iPad and likes to watch videos this is the app. It has preset playlists from disney, pbs kids, storybotz, the learning station, just dance kids, ect. It has many of the videos that I use in my classroom. But most importantly they are appropriate videos (although I find it hightly strange that my child likes to watch videos of people opening a toy or playing with a toy...). When on the YouTube site my child likes to click on the vidoes on the side that supposedly related to the video she was watching however sometimes she ends up on some weird things, however in this new app there are not those buttons on the side. While I don't let me child live on YouTube, during times where we are in medical situations it is a good distraction for her (ps, thank you to our friend in collage who gave me this iPad to use with kids while doing autism therapy... several years later there is a little girl who still gets a lot of use out of it and it makes things easier for all of us!)
We will not have the results from the sleep study until at least late next week. Sometimes I think the theme song to this portion of my life is the Jeopardy do...do...do...do...do...do...do...do! I try my best to put most of the tests out of my mind after they are finished and am just happy when someone calls me with results, and I am getting better at that then I use to be, but sometimes you just want to know!
We then met Brent for breakfast in Elkhorn before I went to work and he went to his ENT for his post op appointment. Brent then flew out later that day (on a flight that got changed no less then 6 times in 24 hours) for work. As I type he is in the air coming back home :)
Wednesday afternoon my goal was for a nap for Jillian and myself. I was exhausted, but she hit that overtired I'm not going to sleep point so it was a long afternoon. At one point I sat down on one of our couches (we have two Ikea small couches side by side in our livingroom.. they kinda seat two people and are lower to the ground) to fix something on the iPad. Jillian was sitting on the other couch. She stood up to see what I was doing and lost her balance as she stood up and fell on the floor (trust me, I have told her over and over and over to not stand on that couch!) She fell onto a blanket on the floor. She cried but it was a really short drop onto something soft so I figured she had to be fine... she then fell asleep. I woke her up around 6pm to get her a bath to get all of the glue like stuff out of her hair. After washing it twice I got about 90% of it out. She did not want to stand up when I put her pajamas on but she was still acting tired. She then went to bed.
Thursday morning we got to school and Jillian was limping really badly. She would not really put weight on her leg. It continued that way all morning and it was hard to get her to stand at all. I called the nurse practitioner's office and they got her an appointment in the late afternoon because we were waiting for an oxygen delivery. Thankfully her oxygen came right at 1pm (the first time her oxygen delivery has gone on without a problem) Oh that reminds me, Monday VNA had to come out because we got home from therapy and her oxygen concentrator would not stop erroring. It would turn on for 30sec-2min and then the error light would come on and the alarm would go off. After 20min of troubleshooting I called VNA and amazingly they had someone to my house very quickly to replace it.
So after VNA delivered oxygen Thursday I called the nurse practitioner's office back and they were able to get Jillian in sooner. We got there and waited in the waiting room for a little bit. The nurse called us back and as I stood up I could feel my skirt was wet. While sitting on my lap Jillian peed through her diaper and clothes and onto my blue jean skirt and leggings. We are not talking a little wet spot here... we are talking the size of a paper plate wet spot in the middle of the front of my skirt. Sometimes you just have to laugh! There was nothing else I could do at that point.
The nurse practitioner looked at her tail bone, hips, knees and legs to try to figure out why she was still not putting weight on it 24hrs later. She is too young to know to be careful with it after falling and has never not put weight on her leg before. The nurse practitioner said she thinks it is muscle not a bone problem and to give her Tylonal and bring her back Monday if she still is not walking on it.
While we were in with the nurse practitioner the GI office called and left me a voice mail. I called back once we left and they were calling to schedule a EDG with biopsies, and full motility testing to be done again. So July 30th we head into Children's for the tests. The first part is done in the OR and then the rest will be done in a room. We also got a call this week that it will no longer work to have Jillian's CT scans and pulmonology appointment done in the same day because the pulmonologist will be gone... We will be spending a lot of time at Children's in July between different doctor appointments and tests.
She is still limping today. She is mainly walking when she has to and holding onto furniture to walk. She is walking like a baby who just learned how cruse along furniture. She is crawling some, and when you ask her where her boo boo is she shows you her shin so I am guessing that is where the injury is however there is not a bruise and you can touch it without a problem, but when she tries to walk she says "ow." I am kinda at a loss for why she can not walk on it correctly. It was a short fall onto something soft and she landed on her back. Hopefully she starts walking on it normally soon.I fell bad for her that it seams to hurt her to walk on it, although she is handling this like a champ!
This is her first real ouch. In fact I dont think Jillian has ever had a band-aid that was not given to her by a medical professional. She falls over all of the time while walking however this is the first time that she has an injury that she gave herself that lasted longer then a few seconds of crying.
Today we also had our home visit for Jillian's state insurance. For the first two years of having state insurance for a child who is disabled you have to have a home visit each year and then it goes to every other year. Since this is her second year, we have to have a home visit to do her renewal paperwork. Each year you have to submit current information to the state about how your child is then to determine if they still qualify for this type of insurance. Jillian is needing more this year then last year so I am not concerned about them renewing it for another year, infact her caseworker gave us paperwork for additional programs Jillian qualifies for. We try to use state programs as little as possible because there are so many families that need them, so we try hard to only use what we have to, not based on what Jillian qualifies for but what we actually need. Without state insurance as a secondary Jillian's medical bills after our primary insurance would be 10s of thousands of dollars each year. Brent's work has a good insurance plan and that is still the case. We are very grateful for the state insurance.

My goal for this long weekend... rest! Hoping for some sleep, looking at grilling out and hey... the main level of our house is pretty clean for our home visit today so I don't have to worry about cleaning this level! Its all about finding things to be happy about!