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Showing posts from January, 2015

A bit of January

Since I haven't done much updating this month, I thought I'd throw it all in one post.

Little Bit started figuring out how to knee crawl just before her 11 month birthday. 2 weeks later, she still mostly army crawls but she's starting to knee crawl too.
She also discovered that she loves the ball pit at therapy. Given that it took us somewhere between 18 months and 2 YEARS to get Raya in it without having a cow, I didn't expect her to like it but she did. I laid her on top of the surface and she just laid there, completely still. She slowly sank down into the ball pit and had a great time grabbing each ball that rolled into her face and flinging it. She also enjoyed kicking her feet. Even when her face and body were completely covered, she was still happy and didn't get scared or cry. That's the kind of experience that reaffirms for me that Raya has just been wired differently since before she was even born.

We were able to get Raya fitted for a new medical st…

The Backpack: A story of faith and prayer

This is the story of an experience Raya and I had while traveling for out-of-state medical testing in December 2014.

Aside from not being prepared for the rain that had instantly soaked us to the skin, I couldn't believe how smoothly everything was going. We had made it to the airport in plenty of time to catch our 6 am flight. Airport security had been a breeze in spite of all of our medical liquids and equipment. The airline staff had made boarding the plane worry-free, even with all of our carry-on bags and the cumbersome medical stroller Raya was riding in. The flight had gone by quickly and we had watched a beautiful sunrise from above the clouds. We had found our bus with no trouble, and the bus driver was kind enough to make sure we knew where to go and what to do when we got off the bus at the train station. A sweet woman who had overheard my conversation with the bus driver went so far as to escort us from the cold, rainy bus stop down to the subway platform and onto the …

New adventures in bolus feeding

It's been almost a month since we went to California for motility testing. I gave myself week or so to process everything and enjoy Christmas before getting down to the business of making changes. And to wait out the rash she got from eating cross-contaminated French fries at the hospital:


Change. It can be such a yucky word. Yes, change can be a good thing, but ugh. Nevertheless, change is what the doctor ordered so change is what we're doing. Very slowly and carefully. We've seen time and time again over the years that this girl's body does not like change and tends to react unpredictably to it, so we're careful. However, since she was healthy and seemed to be back on an upswing with interest in eating by mouth, we decided it was time to go for it.

When the motility doctor came in to talk to me about the results of the testing and her only suggestion was to try and get Raya back on bolus feeds, it took everything in me to hold back my tears until she left the roo…

ENFit Safe Enteral Connections Transition: Don't panic!

(Note: This is a cross-post, written on behalf of the Feeding Tube Awareness Foundation.)
In case you have not heard yet, change is coming to enteral feeding (aka tube feeding). It is a HUGE deal, and although I am no expert on the subject, we (Feeding Tube Awareness Foundation) have been in close communication with the Global Enteral Device Supplier Association (GEDSA), which is the organization responsible for facilitating the changes. We are doing our best to educate ourselves and stay apprised of what is coming in 2015-2016 and share that information with others. I do not claim to know everything, but I do want to share some of what I have learned in hopes of helping other people to not panic. Because let's face it, other people making changes to the way we feed our tube fed children = cause for panic. But don't panic, everything will be okay!

WHY:
First, let's go over why the changes are being made. One only need glance through this article about horrifying real-life e…

Another beautiful Christmas

Christmas this year was blissful. Having gone out of town a week before, I did not get everything done that I wanted to before Christmas. There was so much to do and so little time to do it in, but I did the things that were the most important and just let the rest go, and sometimes that's all you can do and that's okay. We decided to keep things simple and quiet this year, and that's exactly how it turned out.

We came home from LA in the wee hours of the morning on Friday, the 19th. We were up bright and early to make it just in time for the annual Jingle Jog at school. We've been going since our 6th grader was in kindergarten and it's always a fun thing for the kids. They dance to silly songs, take a lap around the soccer fields, and then go inside for lunch in the cafeteria that the students have decorated for the holidays. Since we had both still been asleep when the big kids left for school, it was the first time we had seen them since Monday night and there w…