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Showing posts from November, 2012

Mixing textures and DGE

Good news: Raya ate really well at feeding therapy today. Apparently black beans and applesauce are a tasty combo. (blech) The reason this is so exciting is because for Raya, eating applesauce is huge due to her aversion to its texture, but what's even better is that she mixed the applesauce texture with the whole bean texture. A lot of kids with oral sensory issues and oral aversions have difficulty mixing foods of two different texture together. As gross as it was to sit and watch her eat black beans smothered in applesauce, I was very proud of her. Especially when she would make her yuck face and then kind of gag the beans forward in her mouth to keep from REALLY gagging. That showed a lot of self awareness. She still struggles to drink water without coughing but she really did have a great therapy session.
Bad news: The reason she was willing and able to eat so much at therapy (2T of applesauce and 1-2T of beans) was because just before we let her start eating, I drained her st…

reflux and feed intolerance. blech.

Last night I decided to vent Raya's stomach before her dinnertime feed. Since it had been 4 hours since the end of her last feed and she hadn't eaten anything but 2 or 3 ice cubes, I expected it to be empty. Nope. 3 ounces of junk. Mostly partially digested formula and a little bit of water. She had nothing to eat yesterday by mouth other than ice, so it wasn't solid food. 3 ounces is a lot to have in a stomach 4 HOURS after the end of a feed, especially since everything she gets is liquid. The crappy thing is that there's really not much we can do other than slow down her feed rate more (which stinks) and use farrell bags to vent her during feeds, which stinks more. Then there's the part about not really knowing why things keep slowing down. That stinks too. Maybe (probably not but maybe) we'll be able to see something helpful during her endoscopy next week.

The increase in reflux has led to some interesting conversations lately. I hear a lot of sounds come fr…

Things that are hard to hear

Raya saw a new specialist today. It was an appointment that I had put off for a year, mostly because I didn't really see the point in going but also because I felt like we already had enough doctors to see & didn't really want to add another one. In September when she had her annual CP screening clinic appointment, the very kind and wonderful NP that we saw suggested again that I make the appointment. After talking with a few of my friends whose kiddos have seen this same doctor, I decided to go ahead and do it.

The doctor we saw today was a neurodevelopmental pediatrician. The first thing she asked me was what my goals were for our visit. I must have had a blank, puzzled look on my face because she then said, "Or are you just here because someone told you to come?" Um, yep. That would be it. I told her I just would like to get any insights she could give me on why Raya is the way she is and what we can do to help her be as happy/successful/functional/productive a…

So much to be thankful for!

This Thanksgiving was SO much better than the last 3 have been. 3 years ago on Thanksgiving day, Raya was 2 weeks and 2 days old. I was not sleeping much back then and she was a constant stream of spit up and vomit.
The day after Thanksgiving that year, I dragged myself out of bed around 6:30 (I was probably already up anyway) and went shopping for a few minutes and then went home and probably took a nap. We decorated the Christmas tree that weekend too.
I don't think she really enjoyed it as much as the rest of us did. :)

The next year, her big sister woke up sick on Thanksgiving day. She puked all day. It was awesome cleaning up puke from 2 kids  and trying not to contaminate the non-ill puker all day long on Thanksgiving while Donny and the other 2 kids had the traditional Mexican food feast at his parents' house. (ha ha) I did get a lot of online Christmas shopping done that night though and had a peaceful, quiet evening to myself once they went to sleep.

Then there was last…

Food: Friend and Foe

The unwanted theme of my life for the last 3 years has been patience. I had always thought of patience as just being one thing. You're either patient or you're not. I've learned, however, that there are countless forms of patience. In some situations you're only required to be patient for a few minutes, like when you're sitting in a doctor's office trying to keep yourself from getting angry about having to wait for a long time to be seen. In the grand scheme of things, it's over with pretty quickly. Other things require more long term patience, like waiting weeks to get test results (or waiting months for schedulers to coordinate a surgery/endoscopy...nope, not bitter about that at all...:) Then there are things that take YEARS of being patient hour after hour, day after day, week after week, month after month. Things like wondering if your child will ever be diagnosed with something that will explain all of the other diagnoses or knowing that you may never…

Preschool Thanksgiving

Since Raya's surgery got canceled (or, rather, never got scheduled) yesterday, she was able to go to school and have her little preschool Thanksgiving party. It was a little Thanksgiving feast. Her teacher sent home a paper last week with assignments of who needed to bring what but the teacher had written a note asking me to circle anything that Raya was allowed to eat and then send something with her that she could eat. Knowing how much food was involved made me nervous so I gladly checked the "I will be able to attend" box. :) I really wanted to see what she's like in the classroom anyway and figured that a class party where all the other kids are eating would be a great time to work on all of our feeding therapy skilllllllz.

When I walked into the classroom, there were 10 or 11 toddlers sitting around a table wearing the most elaborate construction paper turkey hats I've ever seen. They (the kids and the hats) were ADORABLE!!
Is that not the most adorable constr…

Surgery postponed...unhappy momma

Back in September after our ugly accidental tube removal & multiple failed replacement attempt incident (more about the incident & frustrating phone calls that followed here and here), I decided it was time for Raya's big puffy scar tissue to be removed. Her GI and I had been talking about it for a year or so, but it didn't seem necessary until we had a problem. Here's how it looked in September:
Big puffy scar tissue. We had the surgery consult in September & scheduled it for November 19th, aka today. November 1st, the GI doctor and I decided that it would be better to move it from the outpatient surgery center to the main hospital so she could do an EGD (endoscopy) at the same time, so the GI scheduler was going to work on getting things coordinated with the surgeon's office to move the surgery to Tuesday the 20th, aka tomorrow.
Long, irritating story short, I'm not even sure to be mad at but somebody didn't do their job, everybody's passing th…

New feeding therapist and a reality check

After a 2 1/2 month hiatus, we have finally found a new feeding therapist. To be perfectly honest, the break has been nice. She started feeding therapy at 5 months old and we both just needed a break. I'm very excited about our new arrangements though. Our very hard working and dedicated OT is teaming up with one of the in-clinic feeding therapists on a few of their patients. We will be seeing both of them on Fridays. We'll start with OT and then go straight to the feeding therapy room. I think this will be a really good thing for Raya and I'm excited to get her back on track with feeding therapy. She's been feeling better GI-wise and I think she's ready to move ahead.

We had our first visit with Miss Heidi yesterday and it went pretty well. Most of the time was spent talking & going over Raya's medical history & feeding therapy history. It was nice to get the chance to start over fresh with a new therapist. We learned helpful things from both of the oth…

First day of PRESCHOOL!

All of the stress and frustration over getting little missy into preschool FINALLY ended this week. We have officially transitioned from early intervention services to preschool. Raya's first day was on Wednesday and she was less than thrilled to get ready for school that morning. She wakes up pretty early every morning so it's not like I had to wake her up or anything. The problem is that you just can't rush this kid. If she's not ready to get dressed, she's not ready to get dressed. If she's not ready for me to give her meds, she's not ready for me to give her meds. We were GOING to have plenty of time to get her to school a few minutes early, but between having to coax her to let me put clothes on her and formula in her belly and another child being slow as molasses to get ready, we barely made it in time.

She was sporting her "Preschool Rocks!" t-shirt and sparkly pink hairbows in her pigtails. (and a randomly placed hot pink teddy bear barret…

Things I hope the neighbors don't overhear while the windows are open...

"Raya get over here so I can plug you in!"
"Mommy, I want unplugged!"
"I don't want to be plugged! I don't LIKE formula!"

"I can't unplug you until you ask with nice manners and a happy face."
"I can't squeeze you until you let me plug you in."
"Eew, gross! It smells like Raya's stomach in here!"

"What was that sound?" Raya: "*giggle giggle* That was just my stomach."

"What's that stuff coming out of Raya?" (referring to syringe connected to G tube) "Oh, that's just chocolate, snot, bathwater, marshmallows, and a little bit of formula."

"Swallow that bite of potato or you are NOT getting anymore butter!"
"Hold still and let me put this back in your stomach or I'm going to have to sit on you. You don't want Mommy to have to sit on you, do you?"

"I don't WANT to go to THAT doctor, I want to go see Dr. S!"
"Raya, it's time…

The belated birthday post

I suppose since I did a whole blog post about the birthday cake, I should do one about the birthday girl too. I don't really even know where to start. How can a parent ever put into words or quantify the ways that their child has changed them? I had been a parent for 6 1/2 years when Raya was born. 3 times over, I had done the newborn/toddler thing and I naively thought that I had it all down. I was pretty sure Kaida had been my rough patch (wicked reflux, stress over 18 months of being off the bottom of the weight chart, weekly weight checks, etc.) and that Raya was going to be smooth sailing. (I will pause while you finish laughing at 3-years-ago Me...)
When she was born, everything seemed fine. At the time. Looking back, I can see now that there were little signs. I will never forget one thing that happened when a nurse had come into our hospital room the day after she was born. I was sitting in bed holding Raya on my lap and she was peacefully zonked out. The nurse accidentally…

Raya's Icing Smile

Just after Raya's birthday last year, I found out about a wonderful non-profit organization called Icing Smiles that involves a network of volunteer bakers who donate their time and talents to make birthday cakes for children with medical challenges and their siblings. After reading through the criteria on their website, I didn't think we'd be able to get one for Raya's next birthday so I just shared it with all of our friends instead and hoped that some of them would be able to benefit from it. Our sweet friend Whitney got to have a beautiful cake & cupcakes from an Icing Smiles volunteer baker for her birthday this summer. It was beautiful AND delicious, and I thought about how fun it would be to have a cake like that for Raya's birthday.

As it got closer to Raya's birthday, I kept seeing more and more pictures on facebook of Icing Smiles cakes and although I of course thought that it would be awesome to have one for Raya, I kept pushing the thought aside…

Something fun

I feel like everything I've posted lately has been negative. I suppose a lot of what we've had going on has been less than positive, (like how Raya's medicine is STILL not here even though it was promised to me by last Friday or this Monday at the latest...) but we really do have fun sometimes and Raya is a sweet and delightful child. :)

Yesterday Raya's Aunt Holly got married. We waited for them in the bright sunlight & 89 degree weather outside of the temple. The kids were bored to tears but they were good. :)
I'm not sure where Ashtyn's other leg disappeared to. My sister-in-law must have snapped her picture at the same time as I did because Ashtyn was missing a leg in her picture too. :)

We didn't stay there long because once they came out, it was time to get ready for the reception. Obviously my kids were nowhere near ready since I had grabbed them from school & rushed over. I felt SO bad when we got home because Raya was having some…