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Showing posts from January, 2012

Feeding therapy with a fresh perspective

We are enjoying a much more normal week this week after last week's crazy schedule. Raya had feeding therapy at home today and it is SO nice to not have to drive her to all of her therapy appointments. This therapist was sick last time so we haven't seen her in almost a month, and boy did we have some things to talk about. :)

I started out with the positive things, like how Raya had a whole week of 250-350 oral calorie days, the fact that she will now eat a 4 oz container of YoBaby whole milk yogurt (100 calories/4oz) and can now do it in less than 45 minutes, and that I can give her more than 1 tablespoon of "sour cream" (plain Greek yogurt) at a time without her smearing it everywhere. All of those things are progress. :) She will also eat Gerber vanilla custard pudding with bananas, strawberry nutrigrain bars, and small amounts of pasta (but only if it's cold). It's exciting to see the list of food she has eaten more than once get longer.

We discussed the…

What a joke!

Have you ever tried to keep a 2 year old's arm in a sling?

It's pretty ridiculous.

Breaking things

Remember how Raya fell off of a chair Monday night & hurt her shoulder? Turns out it wasn't really her shoulder. Appointment #6 of 7 for the week revealed this:
Small buckle fracture of the proximal humerus. Oops. In my defense, the girl has a serious lack of appropriate pain response. She's been favoring it a little bit this week but it has seemed to improve over the last couple days, especially after one of the OTs did some myofascial release on her shoulder on Wednesday. On Tuesday when I had her at the specialty clinic for her weight check, I scheduled an appointment with the orthopedic doctor for today since we already had a full schedule on Wednesday & they only do ortho on Monday, Wednesday & Friday. Wednesday, I had planned on taking her to the urgent care in the evening to get it x-rayed but she seemed to be feeling better & was moving it a lot more so at that point I thought she probably hadn't broken anything or she would have still been more guar…

The big genetics appointment

Some of our appointments are a bigger deal than others. Today was one of the big ones. :) When you have to wait 4 months to get in to see a specialist, you know it's kind of a big deal. And that there are not very many pediatric geneticists. :)
Back in October of 2010 when Raya was in the hospital, her GI doctor had the geneticist come in and see her because there were so many things going on with her at that point in time. She was a mess. We had done labs several times up to that point to test for things like mitochondrial disease, genetic disorders, metabolic disorders, and probably other things that they didn't share with me. :) Some of the lab work had come back abnormal but nobody was ever really sure what to make of it so we just kept plugging along and waiting to see what would happen next. Dr. A (the geneticist) came in to have a look at Raya and when he walked through the door and looked at her, he said that after reading her chart he was not expecting to see such a h…

Weight check, bump in the road & more progress

January has been a wild month around here. We had a busy weekend that started with our lousy appointment on Friday, after which I popped in to visit a friend whose daughter was in the PICU, and then drove to the other side of the moon to take pictures at the 1st birthday party of our little tubie friend Lily. That was the best way to end what had been a very stressful day! Here's my FAVORITE picture from the party:
 Lily's clever mom Alix came up with the idea and I LOVED it! The cute little girl on the right side holding a green balloon is another little tubie friend, Whitney. I wish Raya could have come with me but it was neat to have 3 tubies represented. :) I am SO thankful for our tubie friends! :)

So this morning, Raya had a weight check at the clinic she's usually seen at. As usual, they weighed her sans clothing & diaper, and what do you know, she's NOT 29 pounds like the people at the downtown clinic said she was when they weighed her fully clothed with a…

Wastin' time

We had an appointment yesterday that reminded me of how lucky we have been with the medical professionals that we deal with on an ongoing basis. Now that Raya has been taking in a good amount of calories orally, and after hearing all of what was said at the POPSICLE Pediatric Feeding Disturbances Conference I went to last weekend, I had decided that I needed to take Raya to see a dietitian so that we can make sure we're maximizing the benefits she's getting nutritionally from what she's eating. I had high hopes for this appointment and felt like it was going to be really helpful for me. Not at ALL how it ended up being.

For starters, at every GI appointment we've ever had, they weigh Raya with no clothes on. For obvious reasons, this makes sense when you're dealing with a GI patient. Consistency in measurement techniques is very important when the whole focus of treatment is to monitor how well the patient's body is responding to what is going into it. This app…

2 Year Tubiversary!

Today is Raya's 2 year "Tubiversary" It's something that I have mixed emotions about. Tube feeding was medically necessary but not without long-lasting consequences. If you think potty training a kid is difficult, try teaching a 2 year old how to eat and drink. :) Here is Raya the day she got her first "tubie":  Thanks to the tube, in 1 year on the feeding tube (NG, then G, then GJ) Raya went from "underweight and malnourished" to this:

In year 2, Raya went from being tube-fed directly into her small intestine (because her stomach couldn't tolerate having anything in it) to eating a couple hundred calories a day:

Even though we wish our little girl didn't need a piece of medical-grade silicone sticking out of her stomach in order to be fed and hydrated, we are grateful for the technology that has kept her alive & well, nourished her developing brain, and given her the strength to grow and develop like a typical 2 year old.
We lo…

POPSICLE Pediatric Feeding Disturbances Conference-Part 1

This past weekend I had the opportunity to attend the 2012 Pediatric Feeding Disturbances Conference put on by POPSICLE Center. I thought the title, albeit descriptive & accurate, was kind of funny. J The conference consisted of several speakers from different areas of expertise who deal with children who have feeding difficulties. Overall, I thought it was very well put together, but I wish it could have been stretched out over 2 days to allow more time for the speakers to answer questions afterward and make it through their whole presentations without running out of time. There was SO much valuable information and I’m still trying to process it all. Because there was so much information, this will get very long so I’m going to break it into parts and since the point of going was for me to better understand Raya, I will probably be relating a lot of it to her. I should start by explaining what POPSICLE Center is. POPSICLE stands for Parent Organized Partnerships Supporting Infants…

Good strange and not-so-good strange

Good strange:
I thought about not making this information public yet because it seems WAAAAAYYYYYY too good to be true, but for the last 3 days in a row, Raya has eaten (WITH HER MOUTH) over 300 calories per day. Even more important than the number of calories is the fact that the variety of foods has increased. In other words, she's not getting ALL her calories from sour cream and wheat thins anymore. :) In the past week, she has eaten YoBaby whole milk yogurt (blueberry flavored), vanilla-flavored snowman marshmallows (can we say "chubby bunnies"? :), pita chips, strawberry Nutrigrain bar, Honey Nut Cheerios, rice (guess she's not allergic after all), refried black beans from Chino Bandido (and if you've ever eaten there, you'll understand why this can be classified as strange), pasta (a first), plain Greek yogurt, peanut butter, and Gerber vanilla custard with bananas. It is SO strange to see her eat food, and to eat THAT MUCH food in one day.
I really th…