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A few updates from the week

This week has been a real energy zapper. We've had 5 appointments this week (in 2 days) and weren't really too sad when appointment #6 got canceled for tomorrow and moved to next week. Tuesday started out with allergy testing. I'm very fortunate to have a dear friend who lets Kaida come play at her house whenever Raya has appointments that would be unpleasant for her to come to, like the allergist. (did not know exam rooms could be that small...)

We dropped Kaida off after we dropped the kids off at school and Raya was mad that I didn't get her out of the car too. In order to make her happy, I told her that we were going to the allergist and then to see her OT, whom she loves dearly. The allergist is Dr. S and Raya's GI (whom she also loves dearly) also happens to be Dr. S, so she was confused. When we pulled into the parking lot, I don't remember exactly what she said but it was something to the effect of, "Hey, Mom, what are you doing? This is NOT Dr. S's office!" Then for the rest of the day, she kept asking me when she could go see her GI doctor. Silly girl!

The allergy testing was not fun, of course, but at least this time the results weren't skewed by any of the medications she's on like what happened last time. We tested her for the major food allergens and a couple of other specific things that we've suspected issues with. Scratch testing is unpleasant and I felt bad for her because she has become a very tough little girl but after being poked with 2 sets of 8 prongy things and then 5 more individual prongy things, she was bawling and saying, "Owie! Ow! Ow!" I know it sounds terrible but I was actually relieved when welts started popping up on her back because I knew that the tests were at least working this time. Last time she had a zero reaction on EVERYTHING, even the positive histamine control that's SUPPOSED to have a reaction. Here's what she looked like a couple of minutes into the testing:
The giant red spot under the A is where the positive histamine control is, so it's good that there was a reaction. All the other little welts mean she was mildly positive for each of those things. I don't have the list in front of me right now but I know she was mildly positive for:
Peanuts
Tree Nuts (Brazil, hazelnut, cashew, pecan, etc.)
Milk
Wheat
Oats
Chicken
Rice
Shellfish

So yeah, that's a lot of stuff but I'm not panicking about it yet. Except for maybe the wheat. She was negative on soy, corn and eggs, which is good. Since the results were all fairly mild, her doctor ordered blood tests for all of those specific foods as well as an IgE so that we can get a better idea of how allergic she really is and if we need to keep her from eating any of those things. Wheat seemed to be her highest reaction on the skin testing, which I really wasn't expecting. We go back in a month to go over the results with her doctor and he'll let us know at that point if we need to cut anything from her diet. It always makes me laugh to make reference to Raya's "diet" since lately it consists of ice cubes and anything powdered. :)

The next appointment of the day on Tuesday was occupational therapy. Raya really loves both of her OTs. We've been SO blessed with wonderful therapists and I know that her quality of life is so much better because of the work they've done with her. Raya was in a much better mood by the time we left the allergist's office. Possibly because I fed her chocolate for being a good girl...
"MMMM...Yummy! I wieh choh-wih!" :) ♥ her!!

So lately, Raya has been a bit obsessed with Backyardigans. For a week or two she insisted on being called Tyrone. Then she started changing her name to various imaginary characters from the show. It's rather entertaining to hear a 2 year old yell, "NO! I not Raya, I Medusa!!" That one caught me off guard and gave me (and everyone at the library) a good chuckle. One of her favorite names is "Lady in Pink." I'm not a big Backyardigans fan so I'm only assuming she got it from there but it's SO funny to hear her say that her name is Lady in Pink. Back to OT, the black SPIO that she's been using was at the other clinic so she got to use a different one that day. It happened to be hot pink and SO stinkin' cute on a little girl whose name is frequently Lady in Pink.
See what I mean? We were DYING of cuteness. The necklace was a nice touch, don't you think? She did a pretty good job cooperating during that session but a lot of it was a battle of wills between her and her therapist. She is a teensy bit stubborn. She got to do some things that were a little bit different because her therapist wanted to work on her defensive reflexes a little bit. What I mean by that is that when does something that would trigger a defensive movement, like putting her hands out to catch herself when she falls or avoiding tripping over something, she's often not quick enough with those reactions. They did a lot of cross-plane work where Raya was having to balance while reaching across her body to grab a lego.
She really seemed to enjoy it but it took a lot of verbal cues to get her to do it right, especially since it was a new thing for her. She had a good session Tuesday.

After therapy, Raya fell asleep in the car and we picked Kaida up on our way home. Of course Raya woke up when I got her out of the car but she told me she was "So super tired" and laid down on the couch with her blanket. She's been doing that a lot lately. Even at 7:45 in the morning when we're leaving to take the kids to school she's telling me that she's so tired. All day long she tells me she's tired. It's been strange. While we're on the subject of strange things, she also sweats MUCH more than I think she should and at times when you wouldn't expect her to sweat. Even in the super cold air conditioned therapy room at OT she sweats like crazy, whether she's working hard or not. Then other times she doesn't sweat at all. I'm interested to see if that changed when the hot weather goes away, which hopefully will happen within the next 3 months. blech.

Since Raya hadn't had a formula feed yet that morning, she was "willy humbwee" and wanted something to eat but all she wanted was a Dum-Dum, so I gave her one. I didn't want to give her formula because her feeding therapist was coming and I wanted her to be "humbwee" so she would eat for her therapist. The whole issue of hunger has been interesting lately too. I think there is a part of her that grasps the concept that some gastric pains can be alleviated by eating, but I'm not convinced that the pain she's trying to alleviate by eating is necessarily hunger. Does that make sense?

From personal experience, I know that it can be difficult to discern certain gastric pains like gastritis and GERD from strong hunger sensations. We also know from prior history that Raya's gut doesn't always perceive sensation accurately anyway. This last week or maybe a little more than a week, she's been getting into cupboards and the pantry every chance she gets just to be able to shove SOMETHING in her mouth. Aside from the fact that half the fun for her is climbing to reach things she shouldn't have, I also wonder if she's doing whatever she can to try and make her stomach feel better. She's getting the same number of calories she's been getting plus whatever she's eating, so it's not that she's not getting enough calories or fluids. When she asks for actual foods that we know she likes, like refried beans, she might have one or two nibbles and then she's done. If she was really hungry and hunger was actually driving her motivation to eat, I think she would be taking more bites of foods she likes because we've seen her do it before. Add in the fact that she is once again bleeding from her stoma and this time it doesn't seem to be responding to the Carafate like it usually does, and I think her "hunger" is actually just gastric pain. *Sigh* It's SO hard to know what's going on with her. I used to think that it would be so much easier when she could talk and tell me how she was feeling and what hurt. She can jabber up a storm but she's still pretty much incapable of giving me any details about what's bothering her or if anything even is.

So back to feeding therapy. Raya had a pretty decent session but it still ended in her not swallowing what was in her mouth, and therefore not getting her M&Ms or ice cubes. Her therapist and I may not always completely agree on things (she's an expert with feeding disorders and I'm an expert on Raya) but we agree that Raya needs a break from therapy. I think we all do. I've made no secret of the fact that feeding therapy is hard for me in more ways than one. I would imagine that it's probably frustrating for a therapist to work with a child for however long we've been seeing this therapist (can't remember...) and see some progress but also see a lot of stagnation and some regression. It makes me sad that we are at 2 years and 9 months old and still almost completely dependent on the feeding tube. I can still remember the early days with the NG tube when I naively believed that she'd have the tube for a couple months tops and then be back to eating everything by mouth. We've made huge leaps since then but we are still so far away from being tube free. I'm okay with the tube, it's just hard not to take it personally or feel like it's my fault for not working harder to get her off of it.

Anyway, we will be taking a break for the forseeable future from feeding therapy. One of the big road blocks for us is that our schedule is no longer working for Raya. We had scheduled feeding therapy to follow OT with the hope that she would be nice and calm and organized after OT so she'd be able to sit through a feeding therapy session. The gap between OT and FT had to get bigger than originally planned because the feeding therapist has to drive quite a ways to get to our house from her previous appointment. Raya has been wearing herself out in OT and is crabby and tired by the time we get home so she does crazy things to keep herself from falling asleep during FT. If her therapist has a different opening in her schedule that would work better for Raya, then we'll start up again or if we happen to find another therapist that has openings. She's going to wait a month before she does a discontinuation report and if nothing opens up in her schedule, then she'll discontinue Raya. She won't do a discharge because that would imply that Raya doesn't need feeding therapy anymore, but she'll discontinue so that she can give Raya's slot to someone else.

I've felt like this was coming for about a month but it's kind of scary now that we're here. Even though I understand that she's not saying Raya is a lost cause when it comes to eating, having someone tell you that your child needs a break because they're not progressing stings a bit. We went over all of the "rules" that we try really hard to follow and discussed a bunch of things that I need to bring up at Raya's preschool evaluation, which was very helpful. I'm feeling slightly more prepared for that even though I still don't really know what to expect.

Yesterday was rough just because the big kids got out of school at 12:50 so when it was time to go pick them up, I had to wake Sleeping Beauty from her peaceful slumber on the floor next to her crib.
(And for the record, we don't encourage our children to use plastic bags with wet diapers in them as pillows, nor do we support them in leaving syringes laying all over the floor.)

Today was a long but very fun day. Raya's big sister turned 5 and we spent the entire day doing fun things in between Raya's appointments. First, we went out to breakfast:
Raya wanted waffles too so I got her a plate and gave her some bites of mine. She mostly licked the syrup off the plate and ate ice cubes.
After breakfast, we went to the GI clinic to have Raya's allergy/IgE labs and some other GI labs drawn. The girls read magazines while we waited and Raya kept kicking off her shoes and leaving them in various locations in the giant waiting room but refusing to let anyone else touch them. She somehow managed to make it out of the house with mismatched flip flops that were both the left foot. Oops.
Raya is so tough. I think if it hadn't been for the trauma of the allergy tests this week, she wouldn't have even cried for her blood draw. As always, she got up on my lap in the chair and then stuck her arm out for the lab tech, who saw her do it and made a sad face. Because it's a little sad that a 2 year old knows exactly what to do in that room. We have a great phlebotomist there who has had a good streak of getting in a good vein on the first stick and her streak continued today. She had to draw 4 vials of blood because of the number of labs ordered and Raya cried the whole time but she held completely still anyway. When she was done, she picked out pink coban and 2 princess stickers and we left. We had books to take back to the library and time to kill before OT so the girls read books for a while and we hung out in the air conditioned library.
It didn't take long before she had used up all her ability to focus and behave in public so we left the library and went to OT, but not before taking a lousy self portrait of the 3 of us:

Raya had a good therapy session today. She didn't seem to have a whole lot of energy and we didn't use a SPIO today so she bounced all over the mat and had her own little agenda while she did it.
She also fell off of the scooterboard a lot, which doesn't usually happen. She was just off her game today.

After OT, we went to the mall so Kaida could get the bunny she's been wanting from Build-A-Bear. By the time we finished that and did a little bit of clearance shopping at Children's Place, the girls were worn out so we went to have ice cream.
I'm anticipating that there will be fallout from letting Raya eat ice cream but she was really into it and we were celebrating so I let her anyway. I wolfed down about half of both of their ice cream cones to keep them from making a huge mess and by the time we were all done, we'd all had way too much ice cream. We had a good time though. By bedtime, Raya was an exhausted emotional wreck and alternated between saying, "I so tired" and "I want you!" until I finally put her in bed. And then peace was restored to our house. :)

Comments

  1. Her hair is so cute! It has really grown lately. What is a SPIO for? I haven't read the last few posts so maybe you've talked about it so I'll do a search. I can't believe Kaida's 5. Holy cow.

    ReplyDelete

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