Next surgery quickly approaching...

First things first - things have been going GREAT! I can't tell you how happy I have been lately. She is still on room air - 5 straight days now. I think we are approaching a record for the longest stretch on room air. And to make things even more amazing, we haven't even had to turn on the oxygen concentrator for her naps. She has been able to maintain her best sats ever - even while sleeping!

They want her to be between 75% and 85%. (a normal, healthy person should be close to 100%) Too high sats for too long would be bad for her lungs. And yet she has been as high as 92% while awake. That's CRAZY!

Last week, Brandy had some time off during the week. So, I had to take Harlie with me to take Murphy to school. I just can't tell you how great it felt to be able to carry her in with us! Such a small thing that most people never, ever think about. Much less appreciate and downright ENJOY! And it made my week!!! We definitely got some stares, but I don't think they were bad ones. Just curious I think. I think the helmet stands out. So, it didn't bother me at all.

Murphy's teachers were very nice and enjoyed meeting her. And oh, by the way, Murphy is LOVING his new school. I picked him up on Friday and he looked at me, and got these huge tears in his eyes and said he didn't want to go home. I couldn't believe it. He has never done that before. He made pudding in his cooking class the other day. I can't really blame him for not wanting to come home.

My friend, Melissa, and her two girls, Abby and Isabella came up for the weekend. We took all the kids (including Harlie) for a walk to the pond to feed the ducks and then to the playground. While at the playground I put Harlie in the bucket swing. She LOVED it! She kicked her little feet and held on to the chain. I wish I had thought to take the camera. But I just didn't realize I'd be doing that. It didn't occur to me until we got there. I'll be getting some pics soon though.

We have really been enjoying our little break from so many doctor's appointments. But, unfortunately, we are looking at her next surgery already. I got the call on Friday that she has surgery on September 24th - the day before her first birthday. This is a time sensitive surgery that really should have been done months ago (unfortunately, due to her other issues, it just never made it to the top of the priority list).

This surgery is to correct her anoperineal fistula (we call it her butt reconstruction). Her anus is located too close to her girly parts, and not in the middle of the muscle like it should be. So, somehow, the surgeon will move the opening to be in the middle of the muscle (which luckily, is in the right place). This has been explained to me on several occasions - and I still do not get it. Maybe it just feels so weird and uncomfortable to be talking about this area, complete with diagrams and pictures, with this man I just met, that I simply stop listening. I have determined that I really don't care, I just want him to fix her and make everything work the way it should. He tells us that she should only be in the hospital for a day or two. I am anxious for him to see her again though. He is the same surgeon that operated on her lung just a few weeks ago.

Well, I think this has gotten to be long enough. More tomorrow!

Take care,
Christy