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Showing posts from February, 2011

GI visit

Raya got to see our favorite doctor today (and I mean that, she really is our favorite :). Luckily, a nice friend took Kaida to her house so she didn't have to go with us because wrestling with Raya is just about as much fun as I can handle in one appointment. :)

Anyway, we had a good visit with the doctor, meaning that there was minimal vomiting during the appointment and the doctor and I could pretty much hear each other over Raya's crying/screaming. :) Here's a brief rundown:
Raya weighs 23 lbs 6 oz this week, which is 8 oz less than last week and only 1 oz more than when she was there in January. Not sure why she lost weight but the doctor wasn't concerned. She has a little extra cushion. :)We're still battling the worst diaper rash ever (we're talking blisters & bleeding, TMI) so we now have prescription #3 for that.Dr. S hadn't heard about the inconclusive allergy testing & didn't know that any of Raya's meds would possibly supress hista…

Having difficulty adjusting

I don't know where my happy/content child went but I'd like her back. It started last Tuesday when she had those 3 appointments in the same day, which obviously was a lot to ask of a 15 month old but that's just the way it worked out. On top of the 3 appointments, we switched from giving her 11 oz of water/day in her G tube to giving her 7oz water+1 oz formula in her G tube the same day. She threw up 4 times that day & a couple times the next day and her sleep patterns have changed for the worse this week. Further disrupting her life, we moved on Friday and it seems to have thrown her for another loop. I suppose that could have had something to do with the fact that we weren't able to clear enough room for her crib until today so for the last 3 nights, she's slept in the pack & play in the closet under the stairs. She didn't seem to mind it but once the big kids wake up and run down the stairs, it's a little tough for her to sleep. For pretty much t…

Conclusively inconclusive

Have I used that title before? I feel like I have. Yesterday was a very busy day for the little girl. She started off the day at her pediatrician's office for her 15 month well check, where we found out that she has an ear infection. Luckily since she didn't have a fever, we were still able to get her 15 month shots. She wasn't a fan of that, of course. Her official 15 month stats are 23 lbs 14 oz (64th percentile) and 30 inches (30-50th percentile, depending on which website you look at :). In other words, she's a healthy weight and is WAAAAAYYYYY bigger than the other kids were at her age. Kaida's only 4 1/2 pounds heavier than Raya right now and she's 2 years older. :)

After we were done getting shots & a prescription for the ear infection (that explains the fever she had the other day and the return of her runny nose, by the way), we headed to the pharmacy to pick up a couple of her prescriptions. For once in their lives, the pediatrician's office wa…

A great week of therapies!

Raya is 15 months old today and I'm so proud of her this week. She had all 3 of her therapies and she did really well with all of them. OT was on Tuesday, FT was yesterday and PT was today. At OT Raya reaffirmed her unnatural love for the sandpaper board and we've actually been able to use that to our advantage. I don't like to use the term "manipulate" but in a way, we can manipulate her to touch textures she's aversive to by letting her stand or sit on the sandpaper board while she touches the things she doesn't like. It's like her little safety zone. :) I joked with her OT that we should just get a sandpaper board at home and put a border of hardwood around it (which she's scared of) and we'd never have to worry about her wandering around the house & getting into stuff. :) Anyway, she was a really good sport at OT and we were able to push her limits.

Feeding therapy yesterday was probably the best session we've had the whole time she…

Still puking but still not puking the water (YAY!)

The girl had a little tougher day today. I'm not 100% sure why but I think today it has to do with the fact that on Saturday morning, Daddy doesn't have to leave for work at 5:30am so he didn't shut her pump off until later. I don't know what it is about 5:30 but it seems to work for her.
She threw up 4 times today but none of them were when she had water in her stomach. They were all during the formula feeds with the pump or else on a break from all of it. Perhaps we're on to something. I don't know why but whenever I run the water into her G tube I feel like I'm doing something good for her. Hopefully it keeps working. Her nurse will be back in the office on Monday so I want to talk to her about it & see what the doctor thinks we should do next, or if we should just keep doing what we're doing until after the allergy testing the week after.

Probably jinxing myself but...

We are on day 2 of the every-30-minute-for-5-hours water bolus feeds and things are still going well. She still hasn't thrown up when I've given them to her (it helps that she's pretty much over her cold/cough, knock on wood). Today I even did 7 in a row (30ml/half hour for 3 1/2 hours) and she was fine. I'm going to fiddle with things a little more over the next few days and see if maybe we could do some formula in a few of them.
Aside from tolerating the actual feeds (or drinks, whatever you want to call them :), she also seems to be generally happier during the day. She's never been on a very consistent schedule because it's hard to do that when her schedule is dictated by therapy appointments & doctor appointments & whatever the rest of us have going on but yesterday and today she's been really happy and cooperative, even when it's naptime. I put her in bed after her 7th water bolus had time to settle and hooked up her formula in the feeding…

OT, Textures, Walking, and G-tube Feeds

OT/Textures
I took the camera with me to OT yesterday and I'm glad I did. Raya was in a good mood and was very cooperative. :) Here are some of the things she did at her appointment yesterday:




So far, OT is going great. Most of the time, Raya doesn't realize that the person playing with her is actually pushing her to test her limits and making her work. (not the case with PT. She totally gets that the PT is working her! :) She definitely has reservations about touching certain textures. Watching her at OT is interesting. It's amazing to me the lengths she will go to to avoid certain textures and to seek out others. I think we had about 6 different texture boards out and the one that she wanted to sit on to play was the sandpaper. Of all the pleasant, comfortable things available to her, she wanted the rough, scratchy sandpaper. I can't imagine kneeling on sandpaper with bare feet but she seemed really comfortable on it. When she touches some of the other textures…

Where the blood was coming from

**Once again, I'm warning you that this post will talk about blood and stomach drainage and have a gross picture.**

I posted last week that there was blood draining from Raya's G tube again and then I posted that the bleeding had stopped. This weekend we found out where the bleeding was coming from. I was changing her diaper Saturday morning, which is when I usually check & change the gauze around her GJ tube. I glanced at it and saw that it looked a little bit pink, which is unusual. Normally, there's nothing but a little bit of drainage from her stomach (greenish & kind of looks like what you blow out of your nose when you have a cold). I carefully took the gauze off, which normally doesn't bother her, but she flinched & started fussing. When I pulled it off, I saw a rather large lump of tissue sticking out of the stoma (hole in her stomach where the GJ tube is). I never actually measured it but I'd guess that it was sticking out about 1cm from the hol…