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Showing posts from February, 2012

New perspective on feeding therapy, eating, and "eating"

(Alternate title: today I feel the need to complain/vent/get it all out)

Sometimes when we think we have it all figured out, reality hits us in the face and we realize we don't have a clue. Well, maybe a clue but definitely not the whole picture. When I brought Raya home from the hospital with an NG tube, I naively believed that she would only have it for a couple weeks or maybe a month or two at the most while we got her reflux under control. And maybe if there had been a quick resolution to her GI problems, that would have been the case, but there wasn't. It took me a long time to finally comprehend that the tube was there to stay. Once I finally realized that, I still naively believed that she would need a tube for a year or two but then she'd be able to get rid of it. I also naively believed that resolving her visceral hyperalgesia (hypersensitive gut) and chronic vomiting was the biggest hurdle we had to clear. Wrong-o.

Now here we are, 2 years, 1 month and 1 week aft…

ANOTHER accidental tube removal

This is starting to sound like a broken record, but yes, Raya's tube came out AGAIN. There are no pictures this time because there was blood and a moment of slight fear involved. This was by far the worst one she's had. I got her out of bed this morning and laid her down to change her diaper and realized that her G tube was dangling from the extension tube that was taped to her stomach. When I lifted up her shirt, there was dried blood all over the stoma and part of her stomach. And her finger. Because apparently an empty stoma is a great place to stick a finger.

The crazy part is that I have NO idea how long it had been out but it had obviously been several hours because everything was dry. I don't know when or how it came out but I know it was still in when I went to bed at 10:30 last night. There was a big chunk of dried blood in the center of the stoma and the hole looked so tiny that I honestly expected to have to take her to the hospital to get the tube put back in. …

Periactin and another accidental G tube removal

I love her dearly but she is wearing me out. She is non-stop on the go from the minute she wakes up in the morning and starts yelling, "Mommaaayyyyyy! I wah OUT!" until she finally goes to sleep at night and sometimes also in the middle of the night when she wakes up after her evening doses of meds and can't go back to sleep. Today has been a long day.
I was starting to feel optimistic about Raya being back on Periactin. (it's an antihistimine that's also used to stimulate appetite) She started back on it on Tuesday and hasn't had a real nap since then BUT she has started asking for food again and has been eating some of it. This morning, she REALLY wanted a Nutrigrain bar. (side note: for whatever reason, my kids call them "soft granola bars" so it took me forEVER to figure out that "nah-duhba" meant that she wanted a nutrigrain bar) I gave her half of it and she seemed really happy to have it and was doing a good job chewing it and then …

You know you're a special needs mom if...

I was driving to the post office today and while stopped at a red light, I felt my car start to vibrate. As the brown Oldsmobile with fancy chrome rims bounced up next to me, the vibrating turned into full-on brain rattling thumping bass. I felt like I was sitting in a massage chair. I looked over at the car and it was then that I caught myself thinking, "Wow, that kid must be craving some really strong sensory input! I wonder if he's been evaluated for sensory processing disorder." Then I started laughing out loud at myself. I don't know what was funnier, the fact that I actually thought it or the fact that I now sincerely wonder if the people who like to ride in cars with the bass cranked way up like that might actually have sensory issues.

Pardon me while I brag

I am SO proud of Raya today! I'm also proud of the phlebotomist that drew the full 10ccs of blood that she needed on the first poke. :) Raya has a reputation for being difficult to draw blood from. Her veins are small, "valvey", and they tend to roll and/or collapse. I can count on 1 hand the number of times in the last 2+ years that anybody has gotten the amount of blood they needed out of her in one stick. (I think today makes 3.) Today's blood draw was without a doubt the easiest & best one we've ever had with her.
She's such a smart girl. As soon as we walked into the drawing station, she knew what we were doing and totally took it like a man. Only better than a man because she didn't whine. :) She sat on my lap, pulled the pad down that goes across in front of us and stuck her arms out. (another sad but cute moment :)
I told the girl that Raya's usually a hard stick and puts up a pretty big fight so she got another lab tech to help hold her s…

What happens when Mommy leaves the room

I knew it was too quiet.




It would seem that oral aversions are on her terms. Lest you should be deceived, she spit out all of the M&Ms and Skittles after sucking on them just enough to get them nice and sticky and make the colors run. She did practice her chewing on a couple of the Skittles before she handed them to me though. The good news is that everything washed off easily and the Fun Dip vacuumed out of the rug and chair nicely.

No more allergist for now

Raya had her 6 month follow-up with the allergist scheduled for 8:15 this morning. Obviously when I scheduled that appointment, I didn't realize it was Presidents Day and the kids would be off of school today or I'd have taken a later time slot. Notice how I said we had it SCHEDULED for 8:15 this morning. See, I even have the appointment card:

We got there and checked in and a couple minutes later the girl called me up to the desk and said, "Uh, are you here for shots or a visit?" at which point I knew what was coming. I said, "We're here for a follow-up appointment. Why, do you not have it in the computer?" Of COURSE it's not in the computer. She said they could probably double-book us and asked if I wanted them to try and squeeze us in anyway so I said that was fine. Since it's Raya's first visit of the new year at their office I gave the girl the new insurance cards. Then she started checking to make sure they had our insurance info corre…

Fresh air & sunshine

Raya finally seems to be saying goodbye to the cold that has stuck around since right after Christmas. (knock on wood) Hopefully it will stay away. In a lot of ways she's feeling MUCH better. She's sleeping a lot better now but she's still waking up crying & screaming within 10 minutes of getting her night doses of meds. I really don't get what that's about since we've been doing them the exact same way & at the exact same time for at least several months and probably more like a year. I thought maybe it was the temperature of the meds that was bothering her since they're refrigerated, so I tried letting them sit out on the counter in the syringes for a few minutes first but it didn't help. She's almost always woken up around that time anyway. She used to wake up and vomit at 10:30 every night, so I think this is just the vomit-free version of that. She's also still not eating much, if anything. Yesterday she ate about 1 1/2 tablespoons …

Belly laughs and chew toys

Raya is still not back to 100% but her mood has definitely improved. It's crazy how much she's been affected by getting a sinus infection. The broken arm right before the sinus infection probably didn't help either. Then there's the undesirable side effects of the antibiotics that have messed with her gut and the sneaking suspicion we have that her stomach is bleeding again... I'm SO glad we see her GI doctor next week!
For the past few nights, Raya has woken up in the evening screaming in pain. That's not something that's happened in a long time. Last night she went back to sleep pretty quickly but then this morning she woke up at 5:30 when Donny was getting ready for work and had a poopy diaper that had obviously been that way for a while. It was AWFUL. Suffice it to say we used a generous amount of the huge canister of ointment that her doctor prescribed when she was having major diaper rash issues before and then she and I laid down on the couch and wat…

Sensory Processing Disorder and Oral Development

Of course as soon as I finished typing yesterday's post about how Raya was feeling better & hadn't had a fever or runny nose for a couple days, etc., she made a liar out of me. She's good at that. :) When I got home from the grocery store, Raya had been eating a couple bites of peanut butter. A few hours later, she was standing a few feet away from me and started fussing a little. I picked her up and she had some foamy white-ish snot coming out of her nose (sorry, TMI) and I could smell a vomit-y smell. I wiped her nose and realized that it wasn't her mouth that stunk, it was her NOSE that smelled like puke+peanut butter. Gross. It was about then that I realized she felt warm again and sure enough, her temperature was back up to 100. I put her in the shower since she needed one anyway and by the time she got out & got dressed her temperature was down to normal again. Today has been a better day. Her moodiness has returned to normal 2 year old moodiness, thank g…

One step forward, two steps back

The good news:
Raya's sinus infection seems to be clearing (WHEW)She's sleeping MUCH better this week (knock on wood)She's not nearly as crabby (knock on wood)She hasn't had a fever since WednesdayThe not-so-good news:
She has lost all interest in food again and spits out anything she does put in her mouthHer OT moved this weekend so we are now without OT for the time beingAntibiotics give her diarrhea, even if they're just the 5 day onesI found it ironic that during Feeding Tube Awareness Week last week, Raya went out of her way to make sure we were very aware of her. Our suspicions/fears were confirmed that getting sick and vomiting would lead to her feeding aversion making a reappearance. Last Monday she ate 2T of plain Greek yogurt and then she didn't eat (as in swallow) anything else until today. She's been asking for food all week but whenever we give it to her, she pokes at it a little and says she doesn't want it. Today her darling respite provid…

FTA Week Wrap-up

I just wanted to thank everyone who took the time to read all of my very long-winded blog posts about feeding tubes. I've gotten so many nice comments from people saying that they've learned a lot this past week and that makes me SO happy. I'm so glad that participating in FTA week has allowed me to share some insight into life with a feeding tube. I feel like I need to clarify a couple things though.

First, as difficult as taking care of a feeding tube CAN be, we are at a very good place with Raya now. The difficult time was during her first 15-16 months when so much was happening with her and we were trying to figure out what it was and how to fix it. We are no longer in that difficult "discovery phase" with her, thank goodness. We don't have big scary question marks hanging over our heads anymore like so many of our "tubie friends" do. (just little ones :) We have moved on to more of a maintenance and forward progress phase. That comes with challe…

Feeding Tube Awareness Week- Day 7

The final topic of FTA week 2012 is: Show us your awareness video / Share your awareness idea! How have you been raising awareness this week? What else could we do to raise awareness?

A couple of weeks ago, the kids and I were talking about the fact that Feeding Tube Awareness Week was coming up and what we could do to help people learn about feeding tubes. We came up with the idea that they could do presentations in their 1st and 3rd grade classes at school. I emailed their teachers and explained what we wanted to do and why, and both of them graciously agreed to let us take a few minutes last Friday to teach their classes about feeding tubes. We video taped them doing the presentations in class, but they were a little too far away and the sound on the video didn't come out very good, so we did it again at home. The bummer about that was that you can't see the PowerPoint very well on the tv. Since it didn't work out quite as planned, I'll post the slides & speaker…