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Showing posts from October, 2013

IEP meeting

I told Donny on Sunday afternoon that I just wanted to go to bed and wake up in a week because of everything that was on the schedule for this week. It's been busy.

We had Raya's IEP meeting on Wednesday. For all the awful IEP stories I hear from friends, I am extremely grateful for how well it went. I can't say enough wonderful things about Raya's teacher this year. She has been so great about being careful to keep Raya safe with her food allergies and just from things she said in the meeting, I can tell that she is very aware of Raya's needs and is proactive in working on them. There are things that I would like to have seen written into her IEP but we weren't able to write goals for them because they didn't fit into the 3 areas that Raya qualified in. Even so, her teacher explained to me the things they do (or can do) to still incorporate those things into her preschool experience so they're still being worked on. She has also emailed me more than on…

The biggest meal of her life

Raya has had a good eating day today. I don't know what exactly has brought it on, but I hope it's her periactin (because who wants to be giving a kid medicine that's not doing anything for them). Since the first 3 weeks of it were pretty rough, I decided to do it at night this week. I gave it to her after she had been asleep for a couple hours last night to reduce the risk of her being awake all night (which has happened before with periactin) and she slept great. All of the kids actually slept until just after 7 this morning, which is unheard of, and they almost missed the bus. 

Since we were running so behind this morning and Raya was kind of in her own little world (another gift from periactin), and because I wanted to push the oral eating today, I didn't plug her into the pump first thing this morning like I usually do before preschool. (She's going to preschool at a friend's house on Tuesdays now.) Instead, I gave her a 2 ounce syringe bolus, which we push…

Grain-free, dairy-free baking with Raya

I've never been huge on baking with my kids. Kids are gross and I like my food to be free of germs and other child-related debris. That being said, I do like to do a little bit of baking here & there with one kid at a time. Raya has helped me a handful of times but she's usually either not interested or else I don't want her touching or being near the ingredients I'm using because of her food allergies. She and I stayed home from church today though and I decided it was a good time to do a test run of the recipe I'm hoping to use for her birthday cake. I've had a pinterest board for a while that's all recipes that would either work for Raya as-is or could be easily modified to work around her allergies. We picked out a muffin recipe and a cupcake recipe and got to work.

Props to whoever started the paleo diet craze. It's making it WAY easier for me to find recipes that work for Raya. Looking for gluten-free recipes doesn't always work since most…


What, you mean your 3 year old doesn't ask for potato chips and jam for breakfast??

I need to release some word vomit.

It's been a day, and this is going to be very, very long and I really don't expect anyone to read it unless you're wondering what it's like inside the mind of a "tubie mama" on a stressed out day. Actually it more or less started last night when I was driving to the grocery store. I was already tired, it was after 9pm, and I was thinking about what I needed to talk to Raya's GI doctor about at the appointment this afternoon. Next thing I know, I'm bawling in the car and trying to compose myself so I can go in the store without looking like a crazy person. Most of the time I think I do a pretty darn good job of being positive. I know I could be working harder on...well pretty much everything, actually, but I think as far as Raya's medical stuff goes, I do the best I can with where she is at as far as food and her stomach go. I can remember what her worst times were like and I know how very far ahead of those times we are now, and that usually makes…

Updates from the week

It's been a whole week since I updated and there is much to tell. I should start by finishing the story from last Sunday night. Saturday night, she had woken up late at night with a fever and wanting her stomach drained. The fever only lasted a couple hours and she seemed fine Sunday morning so I wasn't sure what to make of it but thought maybe it was some strange allergic reaction to the cheese she had gotten into the day before.

Sunday evening, she went to bed and seemed fine. She had eaten a little less than half of a peach at dinner and seemed pretty normal all evening. She came charging down the hallway dragging her usual armload of stuff (2 blankets, a few stuffed animals, feeding pump backpack, etc.) with a frown on her squinty-eyed face and I could tell she didn't feel great. She climbed up on the couch and I asked her if her stomach hurt. She said yes so I asked if she wanted it drained again and she said yes. I plugged in a Farrell bag and got maybe an ounce of …

A new calorie record

So this is very exciting but it comes with a disclaimer: Raya is not "cured" and this probably won't be a consistent thing. (Not trying to be cynical, just going off of previous experience.)

Raya has broken her all-time record for oral calorie intake twice this week, probably because of the help of Periactin. On Friday, she ate a whopping 440 calories, which blew her previous record of 310 out of the water. The 310 calorie day was in January 2012, and she had 3 days in a row of 300 calories, also with the help of Periactin. Then she caught a cold that turned into a sinus infection and she didn't eat a single crumb of anything for a whole month, and had not ever hit 300 calories in a day again since then. Up until this week, her max has been about 260 with her average being about 160 (which is her daily oral calorie goal) so obviously, 440 is a big deal. And what did her 440 calories consist of? Here's the breakdown:

1/2 of a HUGE peach at feeding therapy=31 calorie…

Friends who "get it"

I've said it before and I'll say it many more times: we have been SO incredibly blessed to have so many other "tubie" families living in our area. There are only 2 things I would change if I could. One would be that the metro area we live in wasn't so huge and spread out since a lot of us are on opposite corners and more than an hour apart. The other would be that I only wish I could have met them all MUCH earlier on! (most of them either weren't tube feeding yet or weren't born yet when Raya started tube feeding though.) Anyway, I can't say enough about how much of a help and a sanity saver it has been for me to have these awesome momma friends and their kiddos that we know in real life, in addition to all of the amazing people I've met online.

What makes it even better is that Raya is old enough now that she's starting to understand the concept of friends. Toddler friendships are adorable and I love that she has friends at school and at chu…