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Saturday, March 17, 2012

General busy-ness

Maybe it's just because the kids have been out of school on spring break this week but I feel like I've been running around like a headless chicken lately. I'm excited about everything that we have going on right now in our lives, I just need a little time to figure out how all the pieces fit together. :)

We had a nice visit with my mom last weekend. Raya was fascinated with her and also with the toy airplane she brought her. Raya LOVES airplanes right now and yells, "Eh-pane! Eh-pane!" every time she sees one, so a toy airplane was the perfect "GramE gift" for her. She often insists on sleeping with it and one of the nights that she and I ended up on the couch recently, she HAD to bring her blankets AND her airplane to snuggle with.
It's not very cuddly but she had a fit if I touched it. Since she actually went to sleep, I just let her have it and didn't rock the boat. There was one time that she had dozed off and it wasn't touching her anymore so I thought it would be safe to carefully take it off of the couch & put it on the floor but she woke up about 10 seconds later and said, "Hey! Wheh ma eh-pane?!"

Last Monday morning, we decided it would be fun to take the kids to the zoo after Raya's weight check. To make a long story short, we checked in at 9:00 and the guy didn't bother to page anybody to tell them we were there for Raya's weight check so we sat in the waiting room for 30 minutes because the MAs didn't know we were there. At Raya's last GI appointment, I was running 10 minutes late and the people at the front desk acted like I had showed up an hour late or something. It was totally okay for them to just not bother to page anybody and make me wait for 30 minutes but it wasn't okay for me to get a hole in my contact lens so I had to go home and change it and show up 10 minutes late. Thank goodness things like that don't happen very often!
On a positive note, we did have a good weight check. Raya is up to 12.835kg (28 lbs 4.7 oz) which is a gain of about 7 ounces since her last appointment. Good enough for me!

After our 45 minute weight check, we started driving to the zoo and ended up being forced to take a detour because of an accident blocking the freeway we needed to take. I've only been to the zoo once or twice and I only knew how to get there from that particular direction so we accidentally took another detour but eventually found it. When we pulled in, there was a guy directing traffic into the overflow parking lot that they use for field trip buses. It was half full already. We got there about an hour later than we had planned on and Raya was already getting really sleepy and a little crabby. It was hot too. We realized upon seeing the massive crowd of people that were still waiting to even get IN to the gates that the first day of spring break is the WRONG day to try to go to the zoo so we decided to go have lunch and see if the neighborhood pool was warm enough for a swim instead.

We got everybody ready to go swimming and walked to the pool. As we were getting ready to get in, the guy from the pool company came and dumped a bunch of powdered chlorine into the pool. Thwarted again. He said if we waited 10 minutes it would be safe to get in but honestly the idea of swimming in chemicals that I had JUST seen him dump in didn't seem like a great idea so I let the kids stick their feet in on the side opposite of where he dumped the chemicals. Then the people in the hot tub got out so we had the hot tub to ourselves for the kids to swim in, which I prefer anyway. I don't like cold water. :)
They had a great time and Raya was thrilled to be back in the water again. She's really missed "fwimmeen" with her OT!

We went out for dinner Monday night at a Mexican restaurant where they give you a bowl of chips, salsa and bean dip to snack on while you wait for your food. Raya likes chips so we gave her some. She saw everyone else dipping their chips into the bean dip, so I let her have a taste of that. All it took was one taste of that spicy, onion-y bean dip and she was hooked! She hogged it so we scooped most of it out of one bowl and turned her loose with some chips and a little bit of dip of her very own.
For the rest of the week, she's been saying, "Mommy, ah-wah ma-BEANS!" and then she gets mad when I tell her they're all gone. We might have to go back and get some more, darn it. :)

I emailed her GI doctor on Wednesday about all of this waking up late at night crying like she's not feeling well and seeming to have an increase in reflux symptoms. There can be a lot of different reasons for that but for now, we're giving her Carafate (an ulcer medication) in case there is any irritation in her stomach that's causing her to be uncomfortable. She also started up another periactin cycle (read: I remembered to give her periactin) this week and as luck would have it, periactin can have a positive effect on slow motility so maybe the combo of the two will help get her past whatever is bothering her.
I've also started giving her pureed food through her tube again. So far it's just been baby food purees mixed with kefir and coconut milk so it's all liquid and I haven't had to blenderize anything but I'm looking forward to getting back into more of that. She has done well with gaining weight on her formula and I'm not intending to take that away, but I do think it's really good for her body to have some real food to digest too. Even if the dietitian at the hospital doesn't agree with me. :) We're still meeting her daily calorie goal, we're just using food to make up a portion of it and I feel good about that. The tricky part is that she wants to feed it to herself and one of these times, the syringe is going to come unplugged and pureed food is going to go flying. :)


The highlight of my week was a little photo session that we did with two of our little tubie friends, Lily & Whitney. We've been trying since November to find a time when the girls were all healthy, didn't have any broken arms (Raya kept messing that up), weren't in the hospital, had openings in their busy therapy & doctor appointment schedules, and when the weather was good. FINALLY after 4 months, the stars aligned and we got our photo session in. :) It definitely deserves its own post but here's a little preview:

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