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KayTar is doing much better! She is still on Suprax, but she was doing well enough to attempt the day on Thursday. She made it through the day, although her glucose was a bit lower than usual (probably from the extra stress from the pneumonia). Friday was a in-service day, so she had extra time to rest/heal over the weekend. Monday was a totally normal day (right down to the daily headache)!

This zebra art car parked in front of us.

Since it has become clear that it will be months before we get the insurance issues sorted out so she can be seen at the facility that houses her mito doctor, and her soon-to-be geneticist and pulmonologist, we decided to see another pulmonologist in the meantime. Our pediatrician recommended someone (who happened to be the same doc that a friend recommended, too) so I called yesterday to get an appointment and they fit us in today, right after her already scheduled ophthalmology appointment. Perfect! It is so nice when we can take one trip out to the medical center and knock out more than one appointment...especially when we don't have to kill a chunk of time between them.

"Take a picture of how strong I am!"

First up was ophthalmology and the dreaded eye drops. Oh, how she HATES the eye drops! She did pretty well this time, though. Yes, there was screaming, but it was like 5% of her normal eye drop screaming level, so we're putting it in the wins column. Her prescription has changed some since last time, enough to justify new glasses, but not enough to be causing the daily headaches. Drat. He said it is RARELY vision that causes these recurrent headaches, but it is good to rule it out altogether. KayTar got some of those super cool post-dilation shades and we were off to our second stop.

Gloves! She was ecstatic they gave her some!

The pulmonologist seems great. He wasn't dismissive, which is what I was worried about. KayTar isn't a typical kid, even in terms of her systemic dysfunctions, so she needs doctors who can look a little beyond how normal kids function and how normal diseases progress. Those kind of doctors can be hard to come by! I told him about her weird breath-holding breathing pattern (and showed him a video) and told him about the transient desats. First, he started to say that those fingertip pulse oximeters are sometimes in accurate on little kiddos (which I agreed with) and that you really have to pay attention to things like the waveform and heart rate, too...and I politely interrupted to tell him that I had been paying attention to those factors, too, and it seems to be accurate. I had a video of it on my phone, so I showed it to him and he agreed that it seems accurate on all fronts. He doesn't think it is related to the weird breathing (so maybe that IS a tic?), but he thinks the desats are worth looking into. She had a pulmonary function test in the office today, which was good, and she is being scheduled for a sleep study in the near future. He said if it is happening when she is awake, it is probably happening as much or more while she sleeps, so hopefully that will give us some information. He's also going to look at her previous chest films to be sure nothing was missed. I think it is a solid plan and I'm glad we're looking into this a little more closely, it has been a nagging worry for months now.

When all was said and done, KayTar declared it the BEST DAY EVER (she's probably had a couple thousand best days ever by now) because she got disposable sunglasses from the ophthalmologist, and gloves and a nose clamp (from her PFT) from the pulmonologist. She's madly in love with that nose clamp because, "I can finally hold my nose without having to use my hands!" We're very lucky that she is so easy to please. :)

THINGS! RANDOM! SIX!

One of my marvelous BlogHer roomies, Assertagirl, tagged me for the 6 Random Things meme, which is perfect timing really, because I'm preoccupied with a whole list of things and this gives me the ideal alternative to writing about all of it!

1. Link to the person who tagged you.
2. Post the rules on your blog.
3. Write six random things about yourself.
4. Tag six random people at the end of your post by linking to their blogs.
5. Let each person know they have been tagged by leaving a comment on their website.
6. Let your tagger know when your entry is up.

1. When I was very young, my imaginary friend was Humpty Dumpty. He lived in my bathroom with his family; Mother, Father, and Sister Egg. For my fourth birthday, my mom hand sewed me a Humpty Dumpty, and I remember sadly going to the bathroom and telling Humpty that we couldn't be friends anymore because my mother had given me another Humpty Dumpty that I was supposed to play with instead.

2. When I was in first grade I had the following dream and I have never forgotten it. It was Thanksgiving and I had to go in my parents' bedroom to get something. When I came into the room, a man with a gun stood up from where he had been crouching behind the bed and came towards me. I turned to run, but these white hands grew from the door frame and held me fast as the man with he gun got closer and closer, until finally...I woke up. I think it is the only dream I've had that I have remembered long term.

3. I've told this one before, but in case you didn't know, I met Josh online when we were 13. 13! And we got married when I was 17. 17!

4. I was born in Alaska and somewhere on the North Slope there is a beach named after me, "Kyla Beach". My dad had the opportunity to name it and I have photos of the sign and the beach! Of course, no one is sunbathing or swimming on the North Slope, but still. It's random.

5. I love Guitar Hero. LOVE IT. I've beaten Guitar Hero II on medium with 5 stars across the board, and we just got Guitar Hero III a couple weeks ago. Then the XBOX broke and we had to mail it in for repairs. I've got the SHAKES from withdrawal. It is such an excellent stress reducer that I was really missing it while preparing for finals. It is the only video game I play and I totally whip Josh at it.

6. I failed speech my second semester of college, which I find amusing in relation to last week's events. It was the end of the semester, I had just had knee surgery and therefore missed finals. All I had to do was video my last speech and turn it in and I didn't do it. I was 3 weeks away from getting married and healing from surgery and my speech assignment wasn't high on the priority list, unfortunately.

Now for the tagging...

Kristin, my other roomie Mimi, Heather if she can pull herself away from the craziness of her big move, AJ, Dawn, and Flutter.


And a bonus random thing...yesterday in the car, BubTar was playing with my camera and shooting little videos and he happened to catch that rolling thing KayTar's eyes do. The video ends before it resolves itself, but it is the best clip of it we've ever gotten. And it was such a fluke! I'm posting it mostly for record keeping and so I can access it easily (OneTrueMedia always cuts off a couple seconds at the end and it drives me crazy for things like this), but if you have input you'd like to share, I'm all ears!



Friday we are "stimulating the economy" by taking KayTar to the ophthalmologist because of a totally different eye issue, because we can't just have ONE thing, of course. Her left eye was noted to be drifting inward a couple months ago, but it has progressed so that at times she is fully crossing them when trying to focus on objects that are near to her. We are concerned she needs glasses, but I'll also be able to ask about this while we are there, and thanks to BubTar, I'll even have a video to show!