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Showing posts from 2011

A facial expression is worth a thousand words

Fun story to share. So we went out to dinner for Cole's 7th birthday tonight. We went through the usual, "No, we don't need to order anything for her, she doesn't know how to eat yet." conversation, and then Raya started to get impatient. She had been a little testy this evening due to the runny nose that hit her today and got a little upset that I wouldn't just hand my glass of water over to her. In order to keep her happy until our food came and we could give her a french fry to stuff in her mouth, I gave her a 60 ml syringe with a little bit of water in it. She's pretty good at drinking out of it but we had to work to keep her from accidentally unloading it all over everybody around us. :)
She'd been playing with it for a few minutes when she accidentally dropped it on the floor. Right then, a lady who was walking by saw her drop something and was kind enough to pick it up. As she reached out to hand it to me, it suddenly dawned on her that sh…

Shaving cream for sensory processing disorder

We got a rare opportunity to go to Raya's OT appointment without Kaida today. Sometimes I wonder if Kaida is getting in the way of Raya's therapy because she is right there playing with Raya & Miss Elizabeth the whole time, but then on days like today when she's not there with us, I can see how it can be beneficial to have Kaida there.
Elizabeth started out with doing Raya's "rubs and squishes", which is part of the sensory protocol. It involves doing long rubbing strokes down the arms & legs and then doing joint compressions to help increase body awareness. There's more to it than that, but that's the gist of it. :)
Then she got out the platform swing, and this was one thing that is much better done when Kaida is there. Usually when the platform swing is out, the girls race to see who can get on it first and they spend 15 minutes just swinging. Today, I was really surprised by how reserved and cautious Raya was when the swing came out. She sat …

Anticipated decrease

Kids are so predictably unpredictable, aren't they? Here's how Raya's calorie consumption has gone this week:
Monday: 260 calories
Tuesday: 170 calories
Wednesday: 129 calories
I don't know if it's realism or pessimism but I had expected her to have a decrease after her big 260 calorie day on Monday. I was a bit disappointed with how little interest she had in eating a Nutrigrain bar this morning after doing well with them 2 days in a row. Thanks to my handy little digital kitchen scale that I bought yesterday, I discovered that she only made about 6 calories out of 120 disappear, and I'm not sure that they actually made it into her mouth. Such if the life of a tube-fed kid. Some days are great and some, not so much. Today her calories came from Chicken In A Biskit crackers and Greek yogurt and a tiny nibble of Nutrigrain bar.
BUT. I did do pretty well with the real food through the tube part today though. :) I made my grandma's minestrone soup for dinner …

In which Brandis rambles about decisions and blenderized diet

I am happy to report that after 5.5 days on the new dosage of neurontin, there has been a notably positive change in Raya's mood and disposition. Whew. :) I had been really conflicted about where to go next with it but I think increasing the dose was the right thing to do.
I struggle more with some decisions than others when it comes to medical care and nutrition for my children. Some obviously have more potential for impact than others, and I feel like decisions about medications and feeding are the most significant decisions we have to make. It's hard for me to explain the reasoning behind some of our medication decisions. Sometimes all I can say is that we made the decision we made because we felt that we had exhausted our options, a doctor thought it might help, and we hoped he or she was right.
I'm learning that there are people that I can't talk about those things with because their own personal convictions about medication and vaccinations, especially in child…

A Beautiful Christmas Indeed

I love Christmas. I can't say it enough, I just love everything about Christmas. We are so blessed to have 4 sweet children for whom the magic of Christmas is alive and real. They love to talk and learn about baby Jesus, and they get excited about Santa Claus. This year, Raya is old enough to get excited about everything too. We spent Christmas Eve with Donny's family and Raya spent quite a bit of time riding on a wooden rocking horse. Too bad she didn't ask Santa for one. :)
(I've been taking a vacation from the computer this week but hopefully I'll remember to add in pictures.) She wasn't interested in the cookies we decorated for Santa but I did look over at her once just in time to see her put a handful of strawberry frosting in her mouth. She liked it enough to have another scoop after that too. We stopped her just as she was putting some in her sister's hair though. :)
Christmas morning with a 2 year old is so much fun! She kept saying, "Wow!&quo…

December GI Update

I must be getting soft in my old age or something because today wore me out. The big kids are still in school and Donny is off today and tomorrow for Christmas, so he took them to school while I tried to get Raya to eat another Nutrigrain bar. Tried being the operative word. This time she just wanted to smash it and throw sticky crumbs all over the floor I swept AND mopped yesterday. The nerve. :) She did eventually come back and eat half of it though.

After I ran a couple errands, we went to order Donny's glasses and then went to watch Ashtyn in her little class play. Raya lasted all of 10 minutes before she was drawing too much attention and I decided to leave. It was almost time to go to her GI appointment anyway so it was fine.

When we got to the clinic, Raya's insomnia had finally caught up to her and she was asleep. Since we were early we say in the car for a few minutes. I expected her to wake up any time but she didn't. She slept through me unbuckling the carseat…

Fun with Periactin

Before Raya broke her arm on Thanksgiving, we had started her on a medication called periactin (cyproheptadine). It's an antihistamine but it's also used in children with feeding disturbances to help simulate appetite. When it was first prescribed to her, I was told that it would cause drowsiness. (Is it terrible of me to admit that I was totally ok with that?) I didn't think much or expect to see any real side effects though, and we didn't notice any on the first course of it. It did seem to give her a little more desire or capacity to eat a little more at a time though.
Then she broke her arm. She wanted to eat her precious "ta-TEEM" (aka plain greek yogurt/sour cream) but she lacked the ability to hold the spoon or feed herself, let alone do it without getting smelly sour cream/yogurt on her cast. Since she wouldn't let me help her, I decided to stop giving her periactin until after the cast was off. The whole 4 weeks she had it, she didn't eat mu…

It's gone!!

The cast is GONE!! Hooray! :) My computer is only semi-functioning at the moment so cell phone pictures are all I have but here's the events of the day:

All in all, it was a lovely day. I LOVE the clinic that we got the cast taken off at. It's the same place we see her GI and neuro doctors so we're very at home there. Everybody is nice, it's clean, and we just love it. We hadn't met this ortho doctor before but I liked him, and here's why. He was looking at the paperwork I had filled out and asked me to clarify why we had gotten it x-rayed and casted at 2 different places & then were having the cast removed at a 3rd. I told him that we'd had it x-rayed at the urgent care in that clinic, then we had an appointment with the ortho at the CP clinic so they just casted it there. As I was telling him that she has CP, she was more or less dancing on a chair, so that statement was followed up by me saying, "I know it's hard to believe, but sh…

T minus 15 hours

In 15 hours, the cute little purple cast will be gone and Raya will be getting a good scrub in the shower!

(outfit compliments of Ashtyn :)

Clean cast, yeah right!

Asking a 2 year old (or their mother) to keep a cast clean is ridiculous.
It's dirty all the time whether she's eating sour cream:

Or sand:

Only 5 more days until it comes off! :)

Never ask what's next

There are certain questions you just don't ask, like "What's next?" I never ask what's next. It's like saying, "I don't see how this could possibly get worse" which inevitably precedes finding out how it could get worse. I learned a long time ago that praying for patience always leads to opportunities to develop patience, so I don't do that anymore. :) I also never ask what Raya will do next, in part because I don't want to know, and mostly out of fear that she will continue to outdo herself.
She seems to be on a mission to outdo herself this week. Hopefully she won't because I'm already tired. :) We always say that she's lucky she's cute because it's hard to get upset with her when she smiles at me and says, "Hi Mommy!" as I'm plucking her off the kitchen counter. Here she is chewing a piece of gum she found in the cupboard:

Last time I took a shower, I didn't dare leave her running amok in the house …

A smile in the ball pit

When we first started talking about OT at Raya's first neuro appointment, I totally didn't get it. I vaguely remember the neurologist mentioning that she thought Raya would benefit from OT, but she didn't write anything down or make a referral or anything, and I was trying really hard to remember the BIG things we'd talked about so that kind of went out the window. Not to mention that at the time, Raya wasn't on her secondary insurance through the state and didn't have OT as part of her early intervention therapies (we hadn't even started the EI therapies yet at that point) so it would have been yet another out-of-pocket expense. There were a LOT of expenses then since we were seeing GI every couple of weeks & paying higher Rx copays. I didn't understand how much of a difference OT could make and I felt like I was pretty much maxed out on appointments then so I didn't pursue OT for her.
Anyway, at the appointment when the official CP diagnosis wa…

Busy girl

It's amazing how a kid can change so much so fast. Raya has made all kinds of leaps & bounds with talking and just seems so grown up lately. She makes me laugh all the time, even when she's being a pill. :) She's a total parrot lately. She repeats EVERYTHING she hears. Last night at dinner, Donny said something to one of the kids not thinking that Raya was even paying attention, and she repeated it back word for word. You still can't understand most of what she says unless it's in context but she's working hard at it.
Some of my favorite Raya words lately are:
bebbit= blanket
tubie :)
I luh loo doo!= I love you!
Diddy= Ashtyn (we call her Tinney so that's how Raya says Tinney)
Bubba= Cole
Deeda= Kaida
foh-lah= formula
dah-TEEM!= sour cream (still her favorite food :)
bee-bee Dee-us= Baby Jesus
Be nice, Mommy!
You're mean, Mommy!
dammit= stomach (which is why we encourage her to say tummy instead of stomach :)

She's been pretty creative lately with entertainin…

Getting on just fine

If it wasn't for the cute little purple cast on Raya's arm, you'd never guess that she's got a broken arm these days. The little turkey is doing all kinds of naughty things, like climbing on things, falling off of things (sometimes on purpose), hanging from things, putting sour cream on her cast, and so on. I'm SO thankful that it's not hot outside while she's casted. (We had our share of that kind of smelly back when she had her DOC Band! :) Here she is hanging from the table (with the splint, sling & her elbow at a 90 degree angle) about 5 minutes before we left to go to the orthopedic clinic last week:

A couple days before that, I had been talking to my grandpa on the phone and was telling him about Raya's arm being kept at a 90 degree angle in the splint and I jokingly said something to the effect of, "Well, on the bright side, at least she won't be swinging from the kitchen table for a while." and he said, "Oh, I wouldn&#…

Pretty purple cast and an ortho consult

(Note: if you don't want to read about a downer of a doctor's visit, feel free to skip ahead to the pictures at the end.)

Raya had her consultation with the orthopedic specialist today. We've had it scheduled for about 3 months now and I was glad to finally get it over with. It was at the clinic where she's seen for cerebral palsy, and for many reasons I dislike going there. It's really far away (like about an hour each way, longer if there's traffic) and the clinic is dirty and we don't really get to choose our appointment times. (at least not for the first visits with the different specialists.) They just mailed us appointment cards and we showed up when we were told.

Okay, so here's where the frustrating part comes in. Raya's CP is very mild. I get that. We've always known that. I've also said before that if she didn't actually have it, her doctor wouldn't have diagnosed it. Doctors can't just make up diagnoses for patients. We …


This weekend I saw a short documentary on YouTube called "Swallow". This documentary was made to bring light to a condition called dysphagia, which is the medical term for difficulty swallowing, and it can have many causes. Dysphagia is one of the many things that Raya has dealt with in the past. One of the reasons we had to stop her oral feeds at the age of 5 months was because she was not swallowing safely. Instead of the formula going directly down her esophagus, it was pooling over her airway before going down, which can lead to aspiration and pneumonia. Fortunately, she already had a feeding tube at that point and we were able to bypass her having to swallow the formula and reduce the risk of aspiration and upper respiratory infections that can be caused by aspiration.
I am sharing this video with the hope that it will help people to have a better understanding of dysphagia, which is just one of countless possible reasons that a child may need a feeding tube or have dif…

Raya's Thanksgiving Feast (and other festivities)

This Thanksgiving beat the heck out of last year when I was stuck at home by myself with one sick 3 year old and a 1 year old with a fairly new GJ tube who was still vomiting a lot of bile, battling c. diff, and on a crazy around-the-clock feeding/med/G tube drainage schedule. It was quiet but pitiful. :) This year was much more eventful.
For starters, Raya enjoyed a lovely Thanksgiving meal that consisted of...drumroll please...
sour cream and wheat thins, just as I had predicted. :) She was offered a lot of other things by various people which she sometimes took little courtesy nibbles of, but when it comes down to it, she doesn't eat what she doesn't want to eat and it's just good that she's over her super duper gag reflex and knows how to spit things out now. :)

After her sour cream & wheat thins, she decided to play on all the fun things in Aunt Debbie's back yard:
I went in the house for a couple minutes and when I looked outside, my sister-in-law was holding…