*Sigh*

Daniel had another overnight pulse ox done a few weeks ago. I was hopeful that since I didn't hear anything that same day that things were better (the first time he had one is when I came home to a message from the home health office asking when they could drop the oxygen off!). I called the next day and was told they didn't have the results. Waited over the weekend and had an apt early the next week. As we were getting on the elevator to go up they called to cancel it since they didn't have any test results to discuss (thankfully we were already there for another appointment or I might have been a bit upset driving an hour and a half only to turn around and go home!). A week later, still nothing! I finally got ahold of the main nurse that we've been working with and she was able to track them down at the main hospital in another department - whew! I was afraid something had happened with the monitor and we were going to have to re-do it (not a huge deal, but still a small pain to work around and detangle an extra cord all night long since he's still not sleeping).

Results? He's still dropping at night even on 1L of oxygen :( Oxygen levels went down to 71, and his heart rate 40 something!!! (The average was 103 to give a comparison). It's pretty much the same, or maybe even worse, than it was before oxygen! (At that point both oxygen and heart rate dropped into the 60's while breathing room air). Thankfully they are only brief moments during the night, but it still scares me. It scares me that I don't know when it's happening, I don't know if there will be a time when he doesn't bounce back, and we still don't know 100% for sure what's causing it! It's just frustrating at this point.

We have had numerous appointments the past couple of weeks, 2 of them were to test the girls' vision. Lillian is a little farsighted, but he is hopeful she will outgrow it so no glasses for her yet. Morgan, on the other hand, is also farsighted and has an astigmatism in one eye. I have been asking about her vision for a couple of years now, and they tested it in office, but it wasn't until I went with her to see what the process was (the nurse coaxed and prompted her through the whole thing, then declared her as having 20/30 vision... ummmm... no?? I'm no expert, but that's NOT how you do a vision test!). The next week we went to an ophthalmologist and all the while I was noticing more and more things to be concerned about and the day before the appointment (and each day since) she has complained about her eyes hurting. Her vision ended up being 20/60 which isn't terrible, but definitely not the 20/30 the nurse put in her file. She was fitted for her glasses last week and we should have them soon! I am excited and curious to see the difference it will make for her! We went with MiraFlex frames which seem pretty much perfect for kids so we'll see how things go. She picked out dark purple for her main glasses, then a light blue/aqua color for sunglasses. I am actually contemplating them for myself ;) Seems a lot more comfortable and less painful when (accidentally) getting hit in the face and head. I will post pics once they come in! She's actually excited about them, I think b/c they match mine (rectangle frames) plus it's something only she gets... no one else. Joah is begging for a pair for himself, and I can see the smile on her face whenever I tell him no (gotta love that sibling rivalry). He then declares that "it's not fair!"  - kids are so silly sometimes.