Follow Up to this mornings post

I'll be honest, I am sitting here writing this post with tears in my eyes. I just turned on Pandora to as Jillian calls it "Jesus Music" which is the station for the song Good Good Father, that station has been played a lot in our house lately. I turned it on just needing to clear my head a little and a song came on that I have never heard before (I listen to this Pandora station almost every day and frequently for several hours of my day, so I know most of the songs they play on there) The song was by Lauren Daigle called "trust in you." These lyrics hit me hard:

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less

If you read my post this morning it was about how the past 3 years have been about a lot of waiting and having to trust in God in all of this even when I don't get things in my timing. This song hit my heart.

See I wrote this morning how Jillian has been sleeping in some mornings because she is not falling asleep until later. Well once Jillian woke up this morning she was in a good mood but just sitting and not doing much. She is not overly a morning person so I was just letting her slowly wake up. She was sitting and playing iPad about 4 feet from me (which this weekend she completed a puzzle on the iPad of putting together the skeletal system, and then figured out how to do mazes on the iPad...) and I could hear her breathing. Last night she was playing iPad and refluxing a ton (no the child does not live on the iPad) and I just figured it had to do with the fact she was playing her Mickey game and in part of the game you can use nacho cheese to paint (weird!) and when she sees food like that she starts to salivate and then refuxes the extra saliva. I told her to do something else last night and then it was bed time and her reflux seamed to get better.
I went and got my stethoscope and listened to her lungs and they were not making good noises so we started a neb. This is her first neb since June which is such a huge change from pre-oxygen. I tried getting a pulse ox but our stupid pulse ox (just one you can buy from Walmart) gave me a different pulse ox and heart rate for each finger. She spent her morning just laying around. We then headed to therapy (they have a nice pulse ox) Her pulse ox never got above 95 and with her on oxygen and walking for a few minutes it would dip into the low 80s (while on oxygen). We would have her walk a little bit and then sit for a little bit. We spent the last half of therapy blowing bubbles while she sat and used her leg muscles to kick at the bubbles (she blew a few bubbles too). She was also refluxing a lot during therapy, it has been a long time since I have heard her reflux this bad when she was not watching something about food or doing an oral trial. As we were leaving therapy she told me she needed to go home and lay down because she was sick. She did her "I don't feel good" moan/whine the whole drive home. We got home and she laid on the couch for a while. Then she sat and did puzzles. Then it was time for another neb. After her neb you could tell her body was feeling the neb meds and she got very jittery and cranky. Finally around 5pm tonight she started playing with toys for a little bit (she had a melt down too because a paper free "toy" that came in a movie  broke months ago and it was recycled and she wanted to play with it today) She and Brent were just playing an iPad game together and cuddling. Thankfully she is feeling a little better tonight and I really hope that whatever earlier today was is turning around.

After therapy while she was resting I worked on getting together all of our paperwork for tomorrow. We gave permission months ago for them to get all of her records from Children's but there are a few different reports that are really important that we want to make sure we have with us, including the one with the muscle biopsy report that was missing for a while and someone had to find so I could find out the results.
On top of it today I am just feeling really pregnant. My belly is working on stretching and expanding today and every time I stand up I have to pee. It is just par for the coarse but I think because today has been so stressful between Jillian's lungs and getting ready for this big appointment that I think I am noticing the discomforts of pregnancy even more today.  
Tonight my mind is just racing. My heart is anxious. I know that all I can do is place my trust in Him.

Playing iPad while doing a neb

She just laid on the floor for a while this morning