|She loves to say, "Beeeeeee!" when she sees the camera, hence the funny face. :)|
I fully expected a meltdown at the surgeon's office. She has never been a fan of him. (I don't know what her problem is, he's handsome and his cologne smells SOOOO good. :) She has puked at his office every time she's been there. :) Today though, she was like a new woman. She stood up on the scale all by herself and was very patient with the new MA that didn't know how to work the scale. She got bored during the 40 minutes in the exam room so she had a little dance party with music from my cell phone. The surgeon walked in and Raya was gettin' jiggy to "Take a Chance on Me" by Abba. :) She sat on the little stool and let him look at her tube and never whined at all. Then we stopped by the DOC Band place down the hall to say hi to the cute girls that work there. They couldn't believe how big Raya's gotten. :)
We stopped at the produce market on the way home and got a bunch of fruit & veggies and then went to the pharmacy, which ranks right up there with the bank & the post office as one of my LEAST favorite places to take kids. They have a drive-thru but I had to go in because I was trying to get them to fix 2 things that they screwed up on last time. That turned into a half hour wait, so by the time we got home it was about 5:00. Very. Long. Day. It was still a good day though.
We got a lot accomplished. At the allergist, we discussed the fact that if we want to re-test Raya for food allergies, we would have to take her off of the medication that keeps her from dry heaving all night & morning, and that is something that NONE of us want to do. Nobody wants to rock that boat! :) We've decided that the best thing for Raya would be to continue offering her as many single-ingredient foods as we can and stay away from the common offenders like dairy, nuts, eggs, etc. The reality is that with Raya being suddenly willing to put a lot of different foods in her mouth, we need to encourage her by giving her a lot of things to try, even if it means that she gets a little bit of the things on the list we're trying to avoid. Mainly though, we'll stick to things that are very simple and try to find things that she likes enough to work on her eating skills. We also discussed the changes that have taken place since Raya switched formula. She's had eczema on her legs since she switched from Neocate to Peptamen so he gave us some hypoallergenic moisturizer to help with that. She has also started to drop a little from the weight curve that she had going. She's still between the 25th & 50th percentile but she's dropped some in the last couple of months. She'll have her 18 month well check next week and then a weight check w/the GI doctor in 2 weeks so if she's not moving back up on the curve by then, we'll start talking about increasing her caloric intake either by increasing her volume or by adding duocal to her formula.
Our OT session today was one of the most productive ones she's had. After being bored out of her mind at the allergist's office, she was more than happy to go play with her OT. :)
The visit with the surgeon went exactly how I predicted it would go. I gave him a brief rundown of how things had gone from the time we last saw him in August/September until now and explained the problem with the leaking J port. He agreed that the ports are wearing out and the backflow valves don't work (hence the bile backing up into the extension tube) and said it needs to be changed. However, since it's a GJ tube and not just a G tube (which I could have changed at home by myself), it has to be changed at the hospital by the interventional radiologist, so all they could do for us was call scheduling to try and get us in faster than if I just called them myself. It was kind of a pointless appointment but sometimes you just have to jump through hoops. Honestly, I really enjoyed my day alone with Raya. She was so good today and we had a really nice day together.
This evening, I knew she was exhausted and thought about putting her to bed right before the rest of us ate dinner, but then I figured she might as well stay up and "eat" with us. I put her in her high chair at the table with the other kids (aka her peer models :) and fixed plates for the 3 big kids. Normally I just bring Raya an empty plate or bowl with a spoon in it, but I figured what the hey, I'll give her a couple french fries. Everybody, including Raya, folded their arms for the blessing on the food and then I gave them their plates. Raya picked up a french fry in each hand and started playing with them. She licked them, broke them in pieces, put some pieces down her shirt, and dropped some pieces into her chair so she could smash them with her bum.
|Putting a french fry in her mouth without it actually touching the inside of her mouth :)|
|Stabbing the mango|
|"kissing" the mango :)|