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Showing posts from August, 2011

GI visit and a sad farewell

We had a bittersweet GI visit today. As far as the GI stuff goes, it was great. Raya has made a full 180 when it comes to how she handles doctor appointments. It used to be that she started crying as soon as we walked in the room and we couldn't leave the clinic without her vomiting at least once. NOW on the other hand, Raya waltzes in there like she owns the place.
She holds out her arm to get her blood pressure taken, holds still while we lay her on the measuring board, sits still while she's on the scale, and actually smiles at everybody. Even the doctor. :) I don't know how her doctor was ever able to hear anything with the stethoscope while Raya was screaming and trying to get away from her before but now she just lays there perfectly still and I think she actually enjoys it. :)
Today she weighed 25 lbs 9.5 oz (11.6-ish kg) and was about 33 inches tall. I think there's a bit of a discrepancy between the scale at the GI doctor's office and the scale at the aller…

A great day of therapies

As not-great as last week's PT session went, that's how great today's was. Raya's PT brought her 2 little girls with her and they were the PERFECT distraction for Raya. Her little leg muscles were like rocks today and she really needed some good soft tissue work on them, which she normally doesn't like very much. Today she did great since she had people there to watch. :) She was in a great mood and didn't cry once, which also doesn't happen very often. She usually has a meltdown at some point during her session.
She had a pretty good day all the way around today. I switched out her usual oatmeal & raisins for cream of wheat & raisins and she seemed to like it better. I can't say that I blame her. :) Cream of wheat is much less glue-like. :) After PT she had a nap and then woke up ready for her feeding therapy session. We saw our new therapist today (we alternate between 2 therapists every week now) and this time went much better. I was having a …

And so it begins

It seems that the cold season (as in runny nose virus-y season) doesn't care if it's still 115 degrees outside. It's here anyway. I had hoped that Raya would somehow be tough enough to resist whatever germs she might pick up by going to nursery but 4 weeks in, she caught her first bug. It really hasn't been too bad, just a stuffy nose & post-nasal drip and a little bit of middle-of-the-night croupy coughing one night. And yes, I'm being presumptuous in assuming that's where she caught it, but over the last month, that's the biggest variable that's changed in her life. And by far the germiest. (is that a word??)

Well, regardless of whether or not she actually got sick from nursery, we have definitely started to think about whether or not nursery is a good idea for her this winter. Of course I've always kind of thought about that with all the kids. Who likes having sick kids, right? As always though, it's different with Raya. Just in the past c…

Visit with the Allergist

We LOVE the 2 allergists that our kids see. They are so good with the kids, they're great about explaining things to me and answering questions, they're very generous with samples, and they're just really great people. Now if we could just get in & out of their office in under 90 minutes, it would be perfect. :) They do have a sense of humor about it though. You can tell by their choice of cabinet-top decor:

Raya saw her allergist yesterday and other than having 2 very bored and restless little girls cooped up in a 9x9 room for an hour, it went well. I caught him up on her progress in the past 4-6 months since we saw him last. I told him we're in the process of weaning her off of the medication that interfered with her allergy testing in February and he said that we can keep trying new foods with her for a few months and see if any issues come up.
I told him about when she had a skin reaction to the pureed rice she smeared all over her face & arms and he was surp…

How to use a Zevex Enteralite Infinity pump bag for a gravity feed

To say that I'm excited about this wonderful little trick I just learned would be an understatement. I'm sure lots of other people already knew this but I'm going to share it anyway.
Gravity feeds are not my friend. Up until last week, I was doing Raya's bolus feeds with a 60ml syringe with the plunger removed. I can't tell you how many times Raya has accidentally (or on purpose) knocked it out of my hand and spilled it. Or how many times I've poured the formula in and unclamped the syringe and then had somebody knock on the door and I couldn't answer it. Then there was the time last week (and a couple times last spring) that I got impatient and let the formula run in a little too quick and she puked. And then there's the whole issue of feeding her when we're out of the house without accidentally spilling, etc. So yeah, gravity feeds have been a pain for me. UNTIL last week. Someone on one of my favorite facebook pages posted a link to a YouTube vide…

Not easy, but worth it

Are we tired of gross pictures of Raya plastered in pureed food yet? :)
I've lost count of how many times in the last 10 days that I've thought to myself how much easier it would be to just forget about feeding her food and let her keep getting all her calories from formula. SOOOOOOOOOOOOOOOOOOOOO much easier. Raya has averaged 2 showers a day since we started pushing the oral feeds. There is oatmeal, mashed pinto beans, and cracker goo EVERYWHERE. We can no longer leave cups of water (or anything else) on the kitchen table, microwave, or first 4 inches of the countertops because Raya can and will get to it. 
"Messy" doesn't even begin to describe it. She has now gotten more creative with her "eating" and has started trying to put the food directly from the spoon into her G tube. She usually fills the balloon port up and I'm afraid it will get clogged. (The alternative is leaving clothes on her while she eats and it's just easier to hose her off t…

223

Raya was a rock star yesterday and ate 223 calories! (give or take a couple :) It was definitely a day to be marked on the calendar. That's more oral calories than she's taken in since she was 5 months old and stopped eating completely. She ate 105 calories at breakfast (oatmeal+raisins+cinnamon) and 118 calories for dinner (cooked, pureed pinto beans+a little bit of salsa juice :). I've been measuring everything in exact amounts and then calculating how many calories per tablespoon. It's a lot easier to estimate how much she's actually eating.
We're excited but we also realize that just because she did it yesterday doesn't mean she's "cured" and it's going to happen every time. This morning, she was more interested in playing with the oatmeal again and probably only ate about 65 calories. Then she tried to shovel the rest of it directly into her feeding tube: One of the biggest lessons that we've learned from this whole experience is t…

Whew. And puke.

I'm feeling relieved right now. It turns out she doesn't hate oatmeal like I thought after yesterday's complete failure at breakfast. (meaning I completely failed to get ANY of it into her mouth) Yesterday, she had a couple bites of oatmeal+banana and then dug in with both hands and plastered her entire upper body with it, including her eyes, nose, and ears and the front half of her hair. But as it turns out, she doesn't hate oatmeal, she just doesn't like bananas! I can TOTALLY accept that. :)
We had our second visit with her new feeding therapist after school yesterday too. It turned into another session of me talking to the therapist the whole time and not really doing ANYthing with Raya, but I needed it. I was a little confused by the time she left because I thought it made sense for the next step in the process to be transferring the formula from the night feed to the day feed so she has the opportunity to have her stomach really be empty in the morning. She s…

The rules of the game

Have you ever played a game with a little kid who keeps changing the rules? That's pretty much what life with Raya is like these days. She's SO over oatmeal now. She did great with it the first couple days but yesterday, she only ate half of what I gave her (75 calories). Today she BEGGED me for "mee-o mee-o", took a couple little tastes and then dug in with both hands and plastered her entire upper body with it. Then she started crying and saying "Owie!" because she had oatmeal all around her eyes and pretty much everywhere else. I wiped it off of her face and then said, "Okay, eat one bite and then you can get in the shower." She said, "O-day." and opened her mouth but never even attempted to swallow it. I'm not sure if we'll be able to get her to eat oatmeal again anytime soon.
That's what I mean about Raya changing the rules. Just when we think we've figured something out, she changes her mind and we have to keep look…

Little Ms. Chief

Nothing but mischief: That's 2 bottles of blue craft paint, by the way. Oh, and do you like how the big kids clipped a pacifier (which she hasn't used since she was 5 or 6 months old) to her shirt? And this was after she had already eaten dirt, rocks and red paint earlier in the day. I keep telling Donny THIS is why I never get anything done around here! :)

Accepting, embracing, and moving forward

After moping and questioning and being paranoid for 2 weeks, I'm finally feeling ready to move forward. It really is difficult to put into words why a successful transition from GJ tube to G tube (intestine feeds to stomach feeds) has been so hard for me to accept. I'll try anyway though. First, when you spend 18 months of your child's life trying to document every little detail of her life in hopes that something will be the key to finding an explanation/diagnosis that never comes you end up questioning yourself and questioning whether there even IS something wrong. I know logically that makes no sense because there definitely is something wrong with a baby that vomits 8 or 10 times a day.
And second, when test after test comes back normal though, you start to feel like you are the problem with the equation, especially when you fly her across the country to see a specialist and her symptoms suddenly disappear, only to reappear when you get home. When nobody can find answ…

Never mind, balloon's not leaking

After a few days of being baffled as to the inconsistent water levels in Raya's G tube balloon, I'm pretty sure I figured out what's going on. I thought the balloon may have had a leak in it that was only leaking occasionally because it was probably on the upper part of the balloon where the stoma was keeping it from leaking. Pretty sure I was wrong though.
Okay, so I'll admit I'm a little on the lazy side about flushing the tube as often as I should and we used to ALWAYS leave the extension tubes on. That was because she was on continuous feeds and/or drainage for upwards of 18 hours a day, and it really bothered her skin to have tape put on and then taken off multiple times a week, let alone every day. It was easier on all of us to just leave the extension tubes taped on. Fast forward to now, she's only needing to be fed about 15 hours a day and it's less than that when we do bolus feeds, so I've been really good about flushing the extension & unho…

Keeping me on my toes

If I have bags under my eyes, it's probably (still) Raya's fault. :) Now that she is pretty much back to digesting like a normal human being (aside from her food's method of entry, of course) she seems to have an endless supply of energy. I also still think her busy-ness has something to do with her sensory issues, and now that her stomach is more heavily involved in digesting her food, her hypersensitive gut makes her fidgity.
Anyway, every time I turn around lately, Raya is on the kitchen table looking for abandoned food, under the kitchen table looking for food that's been dropped on the floor (or thrown by her at an earlier time) or climbing over the back of the couch or climbing up to the kitchen counter to get into whatever is on it or getting into things in my room or getting into things in the pantry or getting into things in her medical supply bench or getting into things... Are you catching the recurring theme here? Basically she's like a normal 21 month …

Eating oatmeal

A certain little red-haired girl decided she wanted to eat oatmeal for breakfast this morning. I made a packet of banana oatmeal (because nobody else will eat it) and put it in the blender with half a banana. The little pill ate all of it except for what she painted herself with. That required a second shower for the day, the first being due to an overflowing diaper of epic proportions. (because it's the first day of school and she wanted attention too:) Anyway, we seem to be on the right track now. Full speed ahead! :)
I know she doesn't look too happy in the picture but really, she was. She's trying to say "Me!" for the camera. :)

One extreme to the other and Happy Tubiversary!

If you're looking for Raya, she's probably in the high chair stuffing Cheerios in her mouth. Or under the kitchen table grazing for whatever the big kids might have dropped. Or on top of the kitchen table looking for abandoned food. We have most definitely gone from one extreme to the other. We are no longer in the stage of gagging & puking just because somebody looked at her with food in their hand or because she picked up a tiny crumb off the floor and put it in her mouth. Now we have moved into the phase of if it even remotely resembles food, she wants to put it in her mouth, even if she's not coordinated enough to actually eat it.
The funny thing is that I'm 99% sure that Raya's eating has NOTHING to do with being hungry. She's gone for as much as 48 hours with nothing but IV fluids and didn't care at all as long as Child Life kept bringing her new toys to play with. I'm pretty sure that the entire reason she eats is because it's a novel thin…

Simple.

The other night, I was talking to my grandpa on the phone like I do every Sunday night. As always, he asked, "How's that little Raya doing?" I let out a disgruntled little laugh and said, "Oh, she's doing just FABULOUS." and explained to him that none of the complications we were anticipating from her tube change came to fruition and how frustrated I was feeling that she could have so many problems for so long and then suddenly just be fine. I said, "This is too easy. It just seems like after everything we've gone through and everything we've had to do in the last year and a half, this should be harder or we should have to do something big in order to move forward. Grandpa, can it really be that easy?" He chuckled and said, "Well, I guess sometimes it just is, Brandis."

That conversation got me thinking about a story from the Bible. Naaman was "captain of the host of the king of Syria". He was a very important person, bu…

Raya's first REAL day of nursery, with a moral

At our church, when kids turn 18 months old, they can go to the nursery class for the 2nd and 3rd hours of church. Raya was technically old enough in May (read about that here) but ended up not going. At first, it was because she started sleeping through most of the time that she would have been in nursery. Then her GJ tube broke and she started having problems with a lot of bile backing up into her stomach, which needed to be drained for several hours a day. That also made it so that she had to be on the feeding pump for about 20 hours a day again. I had told myself that the next time she was awake for the 2 hours of nursery, I would take her in. Then that day came, and I just couldn't do it. Who in their right mind would send their kid to a little classroom full of other busy, curious 18month-3 year olds for 2 hours with a feeding pump backpack on (with tubes coming out of it) AND a catheter bag full of fluorescent yellow-green bile hanging from a tube taped to her stomach?!? Th…