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Sunday, September 12, 2010

10 Months and the Saga of the Brown Liquid Continues

Raya turned 10 months old on Friday. We took Kaida to play with her cousin-friend Kennedy while Raya and I went on a LONG drive to her appointment with the Anat Baniel Method (ABM) lady. Raya got a nice long nap since it was 60 miles each way and I got to sing along to the radio as loud as I wanted because Kaida wasn't there to tell me she didn't want me to sing or that she didn't like my music. :)
She had a great time at the appointment again. She just plays with toys the whole time and I think for the most part she's totally oblivious to the lady working on her. It's kind of cool to watch her play though because you can tell when the lady is able to free up more range of motion for her. If that makes sense. (If you want to know more about ABM you can check out the website of the lady who developed it and the website of the lady we see. There are videos that show what a therapy session looks like & information about the method.)

It could just be the fact that I actually put pants on her that day but doesn't she look like a big girl all of a sudden?


She is such a sweet girl, especially considering everything she's been subjected to in her short little life so far. Even though she's had an increase in some of her symptoms lately and has some new ones as well, she's still such a happy baby. She's been making some funny new faces lately and she points with one finger a lot now. She also LOVES the shower and she loves taking baths with Kaida, who, by the way, has started figuring out that Raya can actually be fun to play with. Well, really, Kaida just likes bossing her around but it works out well because Raya likes attention from the big kids even if it is in the form of bossiness. :)
I don't have any current height or weight stats because miraculously, she hasn't been weighed or measured for 3 weeks now. :) If I had to guess based on the clothing she's wearing and how close I am to getting her a convertible carseat so I don't have to lug her around in the baby one, I'd say she's probably around 20 lbs. My biggest 1 year old was Cole, and he weighed 20 lbs and 1/2 oz at his 1 year check-up 3 weeks after his first birthday. It's amazing to me that Raya has gotten that big already, especially considering the amount that comes back out of her on a daily basis. Her growth and general health is something we are very grateful for.
Raya is coming to a point when the differences between her and other kids her age are starting to become apparent. At church today, we sat next to a friend of mine whose baby is about 6 weeks older than Raya. It made me realize how much we depended on food to entertain our other 3 babies at church when they were Raya's age. My friend's little girl started to get noisy so she handed her a cracker. The little girl sat down on the floor and munched the cracker and then got into her mom's diaper bag & pulled out a bottle and drank it. If I tried to give Raya a cracker to make her happy at church, she'd just laugh at me. :)
For the most part, I've been oblivious to the things about Raya that aren't "normal". Well, aside from the whole being fed by a machine thing. :) I guess what it comes down to is that I never realized what a huge role food plays in the whole developmental process of a baby. So much of their world revolves around discovering and experiencing food and learning what to do with it. I don't know where I'm really going with that, I guess it's just an observation that I never made before I had a child whose relationship with food is pretty much non-existent and negative.

Now on to the brown liquid. We had thought/hoped that the brown stuff she threw up on Thursday (I think) was going to be the only brown stuff we saw from her but unfortunately that wasn't the case. Last night she threw up brown again but the feeding pump had been on the whole time. This morning she threw up more brown stuff. We didn't catch any of it so that we could take a sample to the doctor but luckily her G tube's backflow valve is defective so as soon as I unplugged the extension tube from her G tube to put her in the shower this morning, she started dripping coppery-colored fluid from her stomach and all over my bathroom rug & her pretty pink pants which will probably never be the same.  :) I happened to have some pediatric urine specimen collectors which are pretty much just plastic bags with a hole in them & adhesive around the hole, so I stuck the hole around her G tube & stuck the adhesive to her skin and let her drip into the bag for a couple minutes. Voila, sterile stomach content specimen. :) Later, I plugged the decompression tube into her stomach and got another good sample and that one had some pretty visible flecks of blood in it. They look like tiny little coffee grounds. I have no idea what it means that there's blood in her stomach other than the fact that there shouldn't be blood in her stomach. I don't know what, if anything, they'll do about it but we'll be taking the samples in tomorrow for testing.

2 comments:

  1. First time visiting your site. My son is 14 months and just had a gj tube conversation done today. He previously had a G tube. He threw up brown colored liquid after getting the hick ups. I already called the GI clinic to let them know. I was just wondering if you got an answer as to what and why.
    Thanks

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    Replies
    1. Yes, it turned out that she had formed a large lump of tissue next to the bumper of her non-balloon G tube button and the bumper was rubbing against it and causing it to bleed. That went on for about 6 weeks, and during that time, she was vomiting brownish liquid and we vented it out of her G tube too. I would suggest that you try to take a sample of the brown liquid because they can test it to see if there is blood in it. We've had smaller but similar incidents since then and it's usually a gastritis flare-up that causes it now, or else she gets irritation inside her stomach around her tube. I hope that helps!

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