Saturday, August 28, 2010
Pics above are of Emily taken a few weeks ago. She found a wounded butterfly and was attempting to love it back to health. Love the one with her hugging the butterfly! That's Emmers for ya!
I signed Emily up for cheerleading today, and she starts in September. Can't wait! Funny to think of my little wrestling tomboy oxygen princess as a cheerleader! Very exciting!
On the sign-up form, they made me sign that she was of "normal health," whatever normal is anyway.... I guess that other than her lungs and tummy, she's A-OK normal! I signed the form at any rate as I am fairly sure it is just a formality that I'm not going to sue them! Madison is a small town, and I know people know she has issues, and most people have seen her on oxygen. I guess we'll see how it works out. I can't imagine that she's going to get anymore roughed up than she does in wrestling, and it's not like I'm ever going to be too far away from her! If there is an issue, I'll just pull her out and put her oxygen on her, ya know.... I'm sure that's what asthmatic kids do, come out to use an inhaler. Well Emmers might have to come out to use oxygen. I don't think that's too different in the eyes of a lot of people, is it? Or maybe it is, but there is no way I'm going to tell her she can't be a cheerleader just because she has bad lungs when her doctor says that exercise is her best medicine! And there is no way I'm going to deny her oxygen if it comes up either, just to keep her looking "normal" for the people up at the complex. The heck with that!!!
I took the kids to the football field today for the jamboree. Ashton's team won both their little mini games which was great to see! Great job Madison White! In my haste to get 4 kids, water, the stroller, lawn chairs, diaper bag, and breakfast out the front door, I forgot the oxygen! Of course sitting up in the hot sun, Emily had a spell when she did need the oxygen. She got really out of breath and sat on my lap whimpering and panting for several minutes saying over and over that she needed oxygen, but she finally got okay. I am definitely going to have to be more careful in the future!
Tonight the kids have gone with my mom to Louisville for their cousin Aleah's birthday party. That should be great fun for them!
In other news, Emily is no longer anemic! In fact, her hemoglobin is now on the other end of the spectrum and is almost high at 13.8! It was almost 4 points lower less than a month ago! This doesn't really surprise me as it seems that we have finally gotten the nosebleeds under control, and also her hemoglobin has always been rather high due to compensation for her lung disease. Blood with more hemoglobin in it can carry more oxygen. Another way Emily's body works around having damaged lungs. Whatever works!
Emily will be going back to school soon, and she is soooo excited. She's already planning out what she will wear and who she will get to play with. She can't wait!
Other than that, not much to report. The boys are back to school, Denny is back to school, and I'm working as always, although I did get my hours cut a little! Braylon is doing well, a bit underweight so the doctor has me actively trying to fatten him up, but otherwise, he's doing great, jabbering up a storm always eager to learn new things.
All in all, life is pretty good right now! The usual worries, money, kids' health, etc., but (knock on wood) we are really enjoying some good healthy months! Thanks for checking in....
Saturday, August 14, 2010
Above are pictures from the fishing tournament last week. Ryan got the biggest fish of his age division at 9 pounds 6 ounces, and Ashton won his age division. They both had a fabulous time, and Emily and Braylon had a great time watching the boats from the river bank! Huge thanks to the Chelsea Bassmasters for all they did so that area kids could have such a fabulous experience!
I took my older boys to the doctor yesterday for physicals, and it was a total nightmare! I won't get into it (and the boys are fine, just bad behavior), but I'd have rather taken kicking screaming crying Braylon to the doctor. At least I am still physically stronger than he is. I am so embarrassed!!!
As for Emily, I am again convinced that milk is the source of her GI issues. We've tried her off milk before without much results, but maybe we were missing hidden sources of milk, I don't know. But anyway, what I do know is that yesterday when I got home from work, her belly looked great. It was so soft and normal looking, I couldn't believe it! We were out of milk and had been for two days. I went to the store last night, and by bedtime, her belly was round and hard.
Then this morning, she came to see me in my room bright and early to say that she wanted yogurt for breakfast. I looked at her tummy, and it did not look too bad (bigger than yesterday afternoon, but fairly soft). I gave her one of the little Scooby Doo yogurt squeeze things, and nothing else. Within a half hour, her belly was hard as a rock. Going to try her off milk again, and see how it goes.
She is still having nosebleed issues, but we are trying a new product (thanks Stefanie), and hopefully it is starting to help. About an hour ago, she told me her nose was hurting and felt like it might bleed. I put some of the gel up in there, and there was definitely blood in her nose, but it did not pour out like a faucet like it normally does. I am hoping that might be a little sign of improvement!
Today, we are taking the kids for a picnic (and probably a swim) at Hardy Lake. Emily is already breathing hard, so we will definitely be taking oxygen.
Wednesday, August 11, 2010
Not too much to update....just more of the same. Summer is here, and with it has come the heat and humidity. Heat index of 115+ degrees. Way too hot for normal healthy people, but Emily in particular does not seem to be handling the hot weather very well at all! A few minutes outside, and she is just so breathless. It is sad to see her struggle with this, especially as she wants so badly to just go outside to play.
We have had a few decent days, and we were even able to take her hiking a few weeks back (picture above). But with the super high temps the past few weeks, even short walks down the street are out of the question. I did give in and took her for a little walk on Monday morning, and we weren't a block away when she said her oxygen wasn't blowing hard enough. I turned her up, and she only made it almost another block when we had to put her in the stroller and wheel her back home. Her legs were shaking, and she literally looked like she was ready to collapse. It is just too much for her.
In other news, we did find out a few weeks back that our Emmers is anemic. She is now on vitamins for that. As for a cause, we will assume dietary (although Emily eats everything), but as she is having so many nosebleeds lately (several the past few weeks, another 2 today), I have to wonder if the nosebleeds could be contributing to her anemia. Makes sense that it could be anyway. These aren't exactly little nosebleeds.
GI stuff is still messed up too....no more puking but big belly (VERY big belly after meals), frequent undigested poops, abdominal pain that often leaves her screaming and shaking after she eats, and something yesterday that looked suspiciously like blood in her poo (hoping she just ate something red). The boys have their yearly check-ups at the doctor this Friday, so I am going to bring it up to the pediatrician again then.
Hopefully we can get her all straightened out soon because it is back to school in a couple weeks!