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Showing posts from November, 2011

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…

Public display of G tube grossness

We are on a bad streak this week. That darn G tube keeps getting pulled out. 3 times in about 5 days, to be inexact. I've forgotten the details of the first one other than it happened. I think she was just wearing a diaper and the extension tube got caught on a kitchen chair she was climbing on and the tube got pulled out. The second time was pretty much the same. I was upstairs, Donny & the kids were downstairs, the tube got pulled out, and Raya walked around for a couple minutes leaking an orange mixture of formula and a smashed cracker she found in the bottom of her sister's lunch bag (gross, I know) before somebody finally noticed it. Then I put the tube back in with one hand while I used the other hand to try and keep Raya from sticking her finger in the hole. I'm sure it was quite the sight to see but my camera was upstairs and I was out of free hands anyway.

Today takes the cake though. This was the first time it's ever happened in a location other than our …

Still eating sour cream

I'm not going to say that Raya likes sour cream because if I do, then tomorrow she'll hate it, but she's now been eating it for a little over 2 weeks. I haven't given it to her every day because I didn't want her to get tired of it, but she's been pretty consistent with wanting it when it's in front of her and she hasn't started spitting it out & saying that it's yucky yet. And that, my friends, is huge. :)
Tonight she was crying so I picked her up and asked her if she wanted some dinner. She said yes and then said, "Ah-dah BEEM!"  (translation: I want sour cream!) So of course, I indulged her. :)
I started her out with 2 tablespoons (which equals 1 ounce, by the way) and a few minutes later, she was asking for more "dah-beem". She makes me laugh so hard when she asks for it sometimes because she waves the spoon around in her hand and the way she says "dah-beem" reminds me of the part in Forrest Gump when they're …

Thankful to be where we are

This evening, I got a text message from a friend asking me what kinds of things were helpful to me when Raya was in the hospital. When I asked her why, she said that her friend's daughter had just been diagnosed with leukemia and was in the hospital and she couldn't think of what to take her. I gave her a few suggestions (snacks, book/magazines, chapstick, shampoo & conditioner, a notebook & pen, etc.) and told her a few things that I wish I had known back at the beginning about being in the hospital with a child.
As I was thinking back trying to remember what helped me or what was nice to have at the hospital, I couldn't stop the tears from filling my eyes because although I have NO idea what this poor family is about to endure, I've seen enough to know that it will be a hard fight and they will never be the same. Memories of each of Raya's hospital stays have been flooding my mind and I'm realizing that there are still some things that I'm not comp…

Boring update with no pictures

Well, in spite of my best efforts to quarantine Raya and keep her as germ-free as possible, she has been nothing but a fountain of nasty green snot for the last 3 days. The only places she went outside of the house last week were the fabric store and the pediatrician's office and I have my opinions about where she picked up whatever she's got. I absolutely dread taking Raya to the pediatrician's office. Nobody pays attention to the separate "sick" and "well" waiting rooms and they put well kids in the same exam rooms that the sick kids have been in, so it wouldn't matter if they did. It's that time of year when Crazy Mommy comes out and starts carrying a baggie of Clorox wipes to sanitize public places before I let anyone in my family touch anything. I'm only half joking, just ask them.
Aside from the nasty green snot, Raya's had some pretty good days lately. She had a really productive feeding therapy session on Tuesday and I probably le…

Adhesives Part 2: Adhesives & Taping Techniques for G and GJ tubes

As I mentioned in Part 1, when we started out on our feeding tube journey with Raya, we had never heard of things like Duoderm, Hypafix, Tegaderm, Mepilex, etc. etc. We had no idea that there were SO MANY different kinds of adhesives that could be used for every aspect of tube feeding, let alone which ones were better for what functions. (In case you missed it, ~here~ is the link for Adhesives Part 1: Adhesives & Taping Techniques for NG/ND/NJ tubes.)

Hypafix has been one of our favorite adhesives for Raya's G and GJ tubes. It's a fabric tape that is very soft and breathable, which is one of the reasons it's so great. It's thin and flexible, and has a strong adhesive but is still gentle on the skin. Being a cloth tape, it is also very strong and doesn't rip apart as quickly or easily as others, and because of that, it has to be cut with scissors.
When she got her first G tube (a non-balloon Bard button), we had the frustrating challenge of a button with no…

Raya's birthday "meal"

Raya's 2nd birthday was much easier for me than her first birthday. Last year was very bittersweet for me. I knew she wouldn't be eating or even tasting her birthday cake last year, but it was still hard for me when the day came and she would barely even touch it.

This year was MUCH different for us. We're still not where I would like to be at this point, but we're definitely ahead of where we were a year ago. This year, she actually had some birthday "breakfast" of little spoonfuls of her big sister's abandoned bowl of cereal milk:

And some birthday dinner:
Little sips of lemonade:
aaaaaaand... Sour Cream!
She had a couple little bites of her cake (which later dribbled out of her mouth in the form of chocolate slobber:)
It was a MUCH better birthday! :)

Happy 2nd Birthday, Raya!

It's hard to believe that this little bitty girl:
 is now THIS:

I read a quote on this blog yesterday that described how I feel about my experiences so far as Raya's mother:

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven.”
Orson F. Whitney
The challenges that we've faced with Raya pale in comparison to many people we have come to know over the past 2 years. I have always felt blessed that there has never been a point wh…