Wednesday, June 3, 2009

GI Appt today

Not yesterday, today. Not the 2nd, the 3rd.
I say that because in my infinite wisdom, I packed up my girl, her equipment, her afternoon feed, her DVD player, her favorite toy, and her lovely nurse and headed to the GI clinic yesterday. Only to be told that our appointment was today. ARG! I came home, convinced that I had written it on my calendar for yesterday and they must have made a mistake ... only to see that it was written on my calendar for today. Perhaps a sign that I am TOO busy lately? LOL

So we went back today. She is down to 29lbs 6oz. The GI isn't thrilled at all with her weight loss. The dietician was out today though, so I have to wait to talk to her about what to do to boost calories.

He was happy that the Miralax is working. We are on one tablespoon daily. He reminded me that you're supposed to put it in at least 4-6 ounces of fluid, but she has never tolerated that much at one time. We put it in her afternoon food mixture - 70 cc's of baby food blend and 100 cc's of pedialyte. It's working, but he told me to be sure and watch her for dehydration.

We are being referred back to feeding therapy, we were supposed to have an evaluation on June 19th. Now that I'm going to the Microcephaly Convention that weekend, I have to reschedule. He said he wants us to do outpatient feeding therapy twice a week for a month or two. Then once she's comfortable with the feeding therapists, he wants her inpatient for intensive feeding therapy. She is able to chew and swallow with no problems. She even enjoys food once you can fight her to get it in her mouth. But she will absolutely not open her mouth for it, and fights you putting it in. It's an oral aversion that is beyond extreme! I have wanted to do the inpatient intensive therapy for years, but he says she's just now ready. I am excited about that!

That was about it for that appointment. We are almost out of school, and it is SO busy around here right now. I am chairing a reading program picnic this Friday for 100 kids at Monkey's school. Guess what? It's supposed to rain that day. A picnic in the park is not much fun in the rain. I am stressing to figure out what to do. I know it will be fine no matter what, but it's going to take a lot of replanning and figuring out new games!

It has been gray and rainy all day. It thundered like crazy last night, from 1:00-2:30am. Our poor old dog Koda, she was scared to death. She was shaking the entire time, whimpering and breathing hard. It was like an anxiety attack in a doggy! Poor thing. I brought her into bed with me and the thunder finally ended. Here's the crazy thing - for 90 minutes it thundered and lighteninged like NUTS. But, no rain! Nuts, huh. :)


Junior said...

We will be praying hard that the feeding therapy works well for Peanut.

Lacey said...

You know what, I never put his miralax in that much water, he can't tolerate it either. I only mix it in like 30 cc to disolve it, and put it in with his formula.