Skip to main content

Exciting and not exciting

Some exciting things happened this weekend and some not-so-exciting things happened, so we'll start with the exciting. Then I'll move on to the not-so-exciting, but not wanting to leave the post on a sour note, I will put a positive spin on it and try to find the silver lining because that's what I do to keep myself from getting angry over things I can't really do anything about. Moving on...

Exciting. I was trying to remember how long it has been since Raya ate anything that even vaguely resembled bread. Her wheat allergy was diagnosed at the end of September last year, so she definitely hasn't had any bread since then. The closest thing was probably the one package of gluten-free crackers I found at Sprouts in December or January shortly before we had to stop letting her have food completely. So yeah, almost a year without bread is a long time. I was honestly starting to wonder how in the world I would be able to find enough ingredients that could be blended together and baked and come out resembling bread since she's allergic to ingredients in every loaf of gluten-free bread I've ever seen. I decided last week that it was time to try adding coconut to her diet, and coconut may just be the golden ticket.

I found a recipe (click here to see it) for a grain-free flat bread that didn't have anything in it that she's allergic to. The only questionable ingredient for her right now is egg since she hasn't had egg added back into her diet yet. We did coconut for a few days and then I threw together these little "coconut buns" for her this weekend. The recipe makes 2 of them, which is perfect when she's the only one eating them and she can't eat more than half of one at a time. Here's how they baked up:

I know it seems really silly, but I was absolutely giddy when these came out of the oven. It's hard to describe what it feels like to have to take ALLLLLL food and liquid except water and 2 kinds of candy away from your 3 year old and then be able to actually give some of it back. One of these days, I will have to video the reaction she always gives me when I tell her she gets to eat something new or that some other exciting thing is happening. She puts her fists up on her cheeks right by her mouth and squeals while she dances around. It's very cute. :)

Anyway, the coconut buns turned out pretty darn good. (PS cooking with coconut flour is WEIRD and nothing at all like using wheat flour) The only complaint I have about them is that they seem really salty, which is strange considering that there is only 1/4 tsp of salt in the recipe. The second time I made them, I cut that amount in half and they still tasted really salty, so I think they need a little bit of sweetener to balance out what must be a naturally salty taste from the coconut flour. They taste good. They're kind of like a subtle and salty macaroon with a bread-like texture. The best part is that they passed the Raya test:

BUT. We're still waiting to see if her little body can handle them. She's been a little off all weekend but it's hard to tell if it's from the new food or not.

She also got to have her very first EVER taste of apple juice this weekend. She has been eating applesauce for a while now without trouble so apple juice is okay too. I gave her a watered-down glass of it and then had fun watching the faces she made while she drank it. It must be very strange to drink something with flavor after having pretty much nothing to drink but water for your whole life.

Despite the concerned look on her face, she did like it. It helped wash down the coconut bun, which is a bit on the dry side. She's had it a couple times since then and still seems to like it but she prefers water and crushed ice. I'm okay with that. :)

And that brings us to the not-so-exciting. There are 2. First, she made it through exactly 1 week of school before waking up with a runny nose. Fabulous. Can't wait to see what she comes home with during the actual cold & flu season. There's a possibility that the runny nose is somehow related to the increased reflux symptoms she had last night, or to eating a new food, but I don't think that's what it is. It wasn't even a bad runny nose, just a little tiny bit. Her eyes look a little funny today too. I gave her allergy medicine this morning in case it was allergies. She willingly took Maalox before school this morning too, which is always a sign that she doesn't feel great. She has eaten pretty much NOTHING today as a result. She had about 2 bites of the half of a coconut bun that I put in her adorable miniature Hello Kitty lunchbox for school and didn't want anything the rest of the day. Whatever it is, I hope it goes away fast.

The other not-so-exciting thing is something that I'm still trying to get 100% on board with. When I picked Raya up from school on Friday, the director of the early learning center was waiting for me so that she could let me know that they had decided to move Raya into a different class. The reason for the move is that she was the only one in her class that wasn't doing full day preschool, so they wanted to put her in a class with other kids that were doing half day. Why nobody noticed that before school started and switched her to the half day class next door BEFORE school started is beyond me, and although I was not at all surprised by the news, it did not make me happy to hear it. In general, I consider myself a pretty adaptable person. With situations that involve Raya, it's much harder to be that way. I know their intentions are good and it will be better for her to be in the class with all the other half day kids, but all I could think was, "How and when am I going to tell this teacher everything she needs to know about Raya before Monday?!" If it was any of my other kids that don't come with pages of documentation, medical history, and disclaimers attached, it would have been no big deal, but Raya is not a kid that we can just hand off to somebody and say, "Here you go!"

I did not get angry and really didn't say much at all because I wasn't even sure what to say. I had no choice in the matter and the change needed to be made, whether I was pleased with the timing of it or not. The director could tell that I wasn't too happy, and what followed became downright comical. She offered to introduce me to the new teacher, and the school nurse happened to be standing right there so she came too. While we waited for the new teacher's class to be released, Raya's class left their classroom to go to the lunchroom. The teacher came out with the clipboard so I could sign Raya out, and the speech therapist that had been working with kids in Raya's class today came out of the room too. Both of them joined the entourage and we all waited for the other class to come out. While we waited, they all gushed about how great Raya is and of course she ate up all the attention and performed to her little heart's content. They were all very sweet and were trying their best to say whatever they could to make me feel better about Raya switching classes and reassure me that everything would be fine. Finally, the other class came out and when they were all gone, the four ladies that were escorting me introduced me to the new teacher. She was very sweet and said that she had seen Raya playing on the playground and thought that she would fit in perfectly in her class. We talked for a minute, I got her email address, and then we left because I was starting to feel a little smothered & we had to go to feeding therapy.

I put off emailing her until yesterday, mostly because I didn't even know where to start. There was a REASON we made it a point to meet with her teacher privately (as opposed to during the come & go meet-the-teacher event) and to meet with the school nurse & district health rep. You can't condense 3 years and 9 months of fairly complicated medical history, instructions for keeping Raya safe from food allergies, and how to handle the feeding pump & G tube stuff into a quick email and expect the other person to really understand it all. Some things just need to be discussed in person with enough time to actually discuss! Then of course when I sat down to try and email her yesterday, my computer wasn't cooperating and I couldn't get it to work, so it was about 11:45 last night before the email finally got sent. I kept it as short as I could (and attached the medical history summary that I wrote up for the district) but it was still long. I tried to keep it to just the most important things, but there are about 4 or 5 most important things.

This morning, I got everybody ready for school and sent the big kids off on the bus, and loaded Raya up in the car for her second first day of school.
(see, you can tell she doesn't feel good)

We went a few minutes early so I could at least show the teacher how to make the pump stop beeping long enough to send her to the nurse's office and how to clamp the tube in case the extension ever comes out of the button during a feed. Bless her heart, I thought she was going to pass out when I popped the extension out of the button. True to form, Raya made the moment even more exciting by passing a large "belly burp" through her G tube as soon as the extension was out of it. That was pretty awesome. I showed the teacher how to reconnect the extension, but by the look on her face I could tell that she won't be coming within 10 feet of that G tube unless she abso-friggin-lutely HAS to. She was very sweet and I appreciated her honesty when she told me that even though she's had other students with tubes and has family members who have had tubes at one point or another, feeding tubes freak her out. She said more than once that she's afraid she's going to do something wrong or hurt her somehow. I told her that I was a bit intimidated by the first G tube I ever saw too but to try not to stress about it.

Secretly, I would MUCH rather have Raya with a teacher that is a bit freaked out and intimidated by her medical conditions than with one who is too laidback about all of it. I feel bad that Raya was just dropped on this teacher without a chance to really talk to me about her issues and ask questions because I would be intimidated too if I was a preschool teacher. The class is really big. Bigger than I think it should be, actually. I hope that the pump behaves itself perfectly and that nothing else ever goes wrong because there will already be a lot going on in that classroom. At this point, I think the school nurse will be our biggest ally (us AND the teacher) and thankfully, Raya is in a very good place emotionally and behaviorally (knock on wood) right now so I think everything will be fine.


Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …