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Showing posts from December, 2012


Tomorrow is big brother's birthday, so tonight we went out to dinner to celebrate. He chose Mexican food, so we went to our favorite Mexican restaurant. They always bring out bowls of chips, bean dip, and salsa while you wait for your food. Corn tortilla chips are one of Raya's favorites, so she was excited when they brought everything to the table. I gave her a plate and she said, ”I want fwee chee-YIPS!” while holding up 8 fingers. Then she grabbed herself a bowl of salsa to dip her chee-YIPS in. This is her saying, ”I LIKE chee-YIPS!” For as incoherent and off in la la land as she was yesterday, she was absolutely delightful at the restaurant. She and I have had some fun and funny conversations today. She hasn't been quite as moody today either and got to spend some time outside this afternoon. She seems to be past the worst of her cold. I'm sure she'll get healthy just in time to go back to school and catch something else. This evening when th…

So much silliness!

I don't want to jinx myself but Raya seems to be starting to feel better. She and I have gotten to sleep in our own beds for a couple nights in a row now. It's been lovely even though I've ended up being up really late anyway. We had an interesting day today. I'm not sure if it was because we accidentally missed a dose of one of her meds last night or if it's because she's not quite back to herself, or if it was just Raya being Raya, but she was in rare form.

She was very happy to go see her OT today. She was out last Friday so Raya has really missed her. For whatever reason, Raya wouldn't talk during OT. All she would do was make little animal-ish sounds and her funny hand gestures that she does with the sounds. When her therapist made her answer a question out loud, she would state at her with a cheesy grin and not answer for a minute or two. Then when she did answer, it was a one or two word answer that was barely even a whisper. She was acting silly …

Christmas with a sick kiddo

We had a great day on Christmas Eve. I fixed our 2nd annual fancy-schmantsy Christmas Eve breakfast, including buckwheat pancakes for Raya. She was pretty excited about her pancakes.

When breakfast was all cleared up and the house was nice and clean, we loaded up the car and drove to Donny's parents' house about an hour away. It was a bright, sunny, beautiful day, which kind of ticked Raya off while we were driving because she doesn't do well with bright light in her face. She fell asleep pretty quickly though and had a nice nap during the drive. The kids were all excited to see their cousins, aunts & uncles, and grandparents. And the horses and dog. :) Raya followed her daddy around while he helped Grandpa feed the horses.

By then, it was getting chilly and windy so I made her come back inside since she's still not over her cruddy cold. It was time for dinner too so we headed in to help get things ready. I had brought her special crackers and a fresh jar of strawbe…

Merry {tubie} Christmas!

Tacky as it may be, medical tape + Sharpie marker = effective way to mark Christmas stockings. Merry Christmas to all and to all a good night! :)

Not a creature was stirring...

...except Raya. She fell asleep on the floor while we watched Home Alone. This would be adorable except she only sleeps like that when she doesn't feel good. Tonight her stomach hurts, inside and out. She has another round of granulation tissue coming on so her stoma is sore. I plugged in a Farrell bag to drain her stomach because she was in obvious pain and I didn't want her to throw up. Once again, there shouldn't have been anything there other than maybe a little extra mucus, but formula came out too. :/ I'm hoping that things will get better so she doesn't have to miss the family Christmas party. Ashtyn sounds pretty cruddy too. I'll be sad if Raya doesn't get to decorate cookies. I made her some everything-free cookies so she can share them with Santa. :)

Focusing on the positive

Today, I'm trying to focus on the positive. My mood recently has been rather negative in general. Lots of frustration, other people making mistakes that cost ME time & energy, people interjecting their opinions about our family's decisions for Raya where they're not welcome, too much time required on the things I HAVE to do, and not enough time to focus on the things that I WANT to do. However, in the midst of a very frustrating and difficult week, there have been bright spots. Here are a few of them. In a bulleted list. Because I like bulleted lists.
Raya has gone to sleep by 8:00 every night this week, and usually earlier. She's calm, relaxed, and content in the evenings in spite of being sick. She's also been surprisingly sweet and pleasant considering that she's feeling yucky. Regardless of the negative opinions we've been given, our choice to try something to help her sleep has been a huge help to her this week as she is fighting this cold. Without …

A little rant about food allergies

*Rant warning. Sleep-deprived, crabby Mommy rant warning. Not directed at anyone in particular, just EVERYONE in general. I'm really crabby today.*

Food allergies are not a joke. They are not a matter of preferential dietary restriction and they are not an attempt to get attention. If someone tells you they or their child are allergic to something, THEY MEAN IT. If they tell you they are allergic to it, THEY ARE ALLERGIC TO IT. That means they can't eat it, can't eat anything that has that ingredient or its derivatives in it, can't eat anything that has touched that food, and probably shouldn't even eat off of a surface that has had that food on it unless it has been thoroughly cleaned. It does not MATTER what, if any, previous reactions they've had to that food. It does not MATTER if they've never had an anaphylactic reaction. It's really not even your business if they have or have not had a serious reaction to that food and the parent does not need to …

2 week post-op follow-up

My facebook status yesterday afternoon said:
"If you ever walk into a doctor's office waiting room and see kids swinging from the chandelier (figuratively, of course), don't judge their mother. She's probably been sitting there for over an hour and has used up everything in her bag of tricks already so she's resorted to letting them rearrange the furniture and rip all the little cards out of the magazines. Just sayin." And that pretty much sums up how fun our surgery follow-up was. I had both of the little girls with me and they did GREAT for the first hour that we were in the waiting room. Especially considering that we were there at 1:30 in the afternoon when Raya normally would have been taking a nap (if it had been a nap-taking kind of day) or at least would have been playing at home. I was SO proud of the girls for behaving as well as they did because I know they were bored out of their minds after the first 20 minutes. I think that was about the point whe…

Granulation Tissue 101

Granulation tissue is the nemesis of tubies everywhere. Some are lucky enough to never experience it and others are not. Raya has been one of the unlucky ones so far. It can happen with ANY type of stoma, not just feeding tube stomas. In case you've never seen it, here's what it can look like:
It is usually somewhere between light pink and bright red, shiny, and has kind of a wet appearance. These are just 2 examples. It varies greatly from person to person. The first picture was when Raya was 8 or 9 months old and the second was this week.
Granulation tissue is a result of the body's natural wound healing process. This process includes 3 phases (4 if you include the initial hemostasis phase, i.e. stopping the bleeding): inflammatory, proliferation, and maturation. In the inflammatory phase, the body's immune system triggers the release of chemicals and specialized white blood cells that flood the area and destroy any invading bacteria as well as "digest" an…