Monday, October 4, 2010

Cooler Weather at Last!

This is a picture of Ryan and Emily taken when Emily was supposed to be cheering. Note she is on the ground playing trucks instead, and in this pic, Rhino is actually saying, "Emily if you aren't going to do it, then I'm going to take your spot." And he did too for a couple of minutes, til Dez ran him off by kicking him. Gotta love the Rhino!

This is a picture of Emily and her cheerleading team. Emily is the shortest one in the pic, 4th from the left.

This is a picture of Dez and Emily getting ready to cheer in their first game.

And this is Emily's favorite part of cheerleading, making posters! Maybe I'd be better off to enroll her in an art class instead! :-)

And yeah mom, sorry, but I've just gotta include this one! This is an adorable picture of Braylon kissing his Mawmaw through the fence at the football field!

As you can see, it's been an exciting but busy month! Emily had her fifth birthday and Ashton had his tenth birthday all within six days time! Wow, hard to believe how fast my babies are growing up! Emily's health is stable right now, for which we are very thankful. She is still breathing fast and hard (as she always has) and still has issues with pretty bad breathlessness during activity, but she's stable. The other kids have had recent ups and downs (mainly asthma related stuff and viral illnesses), but we are getting through that as well. Ashton and Ryan are both doing amazingly well at school this year which is wonderful to see! Emily is also very happy to be back in school and is doing well, having only missed one day so far this year, and that was just because she refused to get dressed for her dad because she said she had bad breathing that day. So just an "off" day, not a real illness. Knock on wood, hope the good health continues!

Braylon and Emily have an appointment with their pulmonologist next Monday, and wow, I'm already getting nervous about that! I know it sounds silly to get so nervous about an appointment that is basically just a check-up, but it seems like I never know when "just a check-up" is going to turn into something much more stressful, and I feel like there is a limit to what I can say at the pulmonologist's office also. A misunderstanding between the doctor and me just about led me to a nervous breakdown a few years ago. (No, I'm not exaggerating either.) So for back-up, I'm bringing Bridget to help me handle both Braylon (and Braylon's super loud crying) and Emily so hopefully the doctor and I will be able to hear and understand each other well, and also hopefully Bridget will give me a little extra backbone. Don't know why, but I always need a little extra in that department when dealing with specialists. :)

I'm on vacation this week, and since we are still having insurance issues and apparently don't qualify for any additional help either, and since the cost to continue to rent her medical equipment is so much, I am hoping against all odds that since the weather has cooled down to a more comfortable range, maybe this might just be the time when we will finally be able to wean the O2, right now before flu season hits. She's five now, and if it is ever going to happen, now would be the time! And if not, then at least I'll have it documented in writing exactly what happened when we tried to wean her, and it'll be recent enough (since her appt is Monday) that maybe the doctor will be able to help us line up something else. So that's the, I don't see it happening, but we're going to give it our best shot and see how long we can go, and document vitals AND behaviors along the way, starting tonight! Wish us luck!

Other things I hope to gain from the pulmonology visit...Braylon's chest is beginning to look a whole lot like his sister's, with the protruding sternum, sunken ribs, then flaring ribs at the bottom. If Emily's grew like that due to her lung disease, then what are the odds that Braylon's is also growing that way due to lungs. Right now, he has a diagnosis of chronic lung disease of prematurity, which has always seemed a bit odd to me since other than mild retractions, he never had respiratory issues at all until he got RSV at ten months old. He was a 3 pound preemie and was only on the vent 1 day and on oxygen 1 day and always had an oxygen saturation of 99-100% even throughout being severely ill with NEC as a young baby. He was always fine til the RSV, and only then did he have to do oxygen for a while. The pulmonologist wanted to do an IPFT a few months back, but it was cancelled due to illness, then wasn't rescheduled because he seemed to be doing so much better. I'm kind of wondering if we maybe should consider rescheduling that, just to be sure. He has become quite the fast breather lately as well, although probably still not fast as his sister. Also there has been recent worries by the ped that Braylon has fallen off the growth charts despite very good eating, so we are giving him Pediasure to help that. He has put on a couple pounds since then, but why would his growth have halted after finally having some good catch up growth?? I mean he was tiny for a long time, but once he did catch up, shouldn't he have held to the chart? Of course that may just be some excessive mom worrying. I'll admit it, I do worry about my babies!!!

For Ashton's birthday, we surprised him with the thing he has been wanting, the DSI. Probably the last kid his age in the county to have one, he was soooo happy! But with a perfect progress report, how could we not reward that??

And our little Emmers wanted a baby doll that looked like her! She ended up choosing her own...a brown haired brown eyed doll that she named Emma Lee. Imagine that! :-) That's our girl! I'll put pics from birthdays on as soon as I get them onto the computer.

Until next time, thanks for checking in....

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