Failed to share that our community health nurse has asked if I want to come **sassy voice ** 'edjumacate dem all about CHARGE Syndrome. Apparently, the other nurses haven't heard or don't know much about CHARGE. So, sometime in June, Andi and I will be enlightening our first group, officially. Luckily for me, our CHN actually encourages my usual sense of humor ... bad jokes and filter less ways... which makes her July 1st retirement really chap my hide!! :0) We will miss her monthly visits, and the input she has toward Andi's progress.
I told her about my book idea, and that's what inspired her to invite me to talk. Wowza. I've only made time to write one page, so, I need to find a way to carve out a few hours a day for me to write. But, they say that if it's important to you, you will make it happen.
I've been working on preparing for Andi's 1st birthday party at the end of May. We're going to have just a small party here at our house, but there's planning that needs to occur, as our house is small - and thus, the party will be outside. Now, if we were living in say, California... a backyard party in May, no problem! But, let's face it, this is drizzletown USA, and there's no telling what weather we're going to get that day...so therefore, we'll be renting a tent. Under that tent, we need places for people to sit, so, we need to rent some tables and chairs. No biggie...it's all good, but still... a lot of thought has to go into such a production. Originally, I was planning on having the biggest party west of the Mississippi, to celebrate the end of a very difficult, yet wonderful, year. But, things aren't as $imple as they used to be, so, therefore, all her Dr's & Nurses will simply get an update card in the mail - letting them know how she's doing.
Andi's spending more time in her bumbo and high chair these days. Since operation turbo flip -- pulling out her g-tube on her contour pillow, we're going to try to do her daytime bolus's upright in her high-chair. It's too tough to sit next to her for a little more than an hour and try to keep her from trying to flip over, despite the tight seat-belt. There are too many other things going on to be tied down to her every feed, so... it will help with the sitting upright, although it seems to put her g-tube in a more leaky position... so be it.
In any case, she's getting stronger. Hopefully, she fattens up soon.
I'm having trouble getting the 30ml flush down in between feeds. Because 1 oz is quite a bit of liquid to add to her full tummy, I'm trying to do the flush between feeds... which isn't always easy. It means stopping her from her play-time to put the MIC-key back in and gravity in another 1 oz of pedialyte. It's kind of a PITA, but, it has to be done.
The 33 calorie formula seems to be tolerated. She had a great night last night, slept deep and hard, and then at 6 a.m., pukage. As I vented, she got sick a few more times. Big bummer, but... her daytime bolus has been sped up to 81/86. So, I kicked in another 1 ml (which is nothing) to try to counter the stuff we don't keep, and sped her up so it's done in just about an hour. Makes for more time to work and play... which she seems to enjoy.
We're trying to get her to say 'Mom'... she says 'da da' all the time...although, she doesn't really associate 'Dad' with 'da da' just yet. But she does say 'hi!' and will wave. I don't think I've posted video of that yet...will try to capture it, as it's pretty dang cute.
I'm pretty excited about talking to people and teaching them about CHARGE Syndrome. It will be a great incentive to finally master my monolog. I'm sure Andi will love seeing a bunch of new faces, and after a few minutes, she'll probably smile really big, say 'hi!' and give them all a wave, or ten. Yeah, we're looking forward to educating others.