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Showing posts from September, 2014

Raya's GJ tube change

Yesterday, we had an unscheduled visit to the hospital. Friday afternoon at 4:45pm, Raya's GJ tube got caught on something and part of the J port broke.
Because a GJ tube has one port that opens into the stomach and another long tube that goes through the stomach and rests in the small intestine, it needs to be placed by an interventional radiologist. At our hospital, the IR department is closed in the evenings and on weekends, so we couldn't do anything but tape it together Friday night and pray that it got us through the weekend (which it did, thank heavens). I was able to catch the GI nurse and she faxed over the order to have it changed, and told me to call IR first thing Monday morning.

I called IR at 7:50 Monday morning and since I assumed they would probably squeeze us in sometime in the afternoon, I took Raya to school as usual. I was 2 steps from the front door of the school when the hospital's phone number popped up on my phone. After a 2 minute conversation, it…

It was nice while it lasted

Well, if I had any lingering doubts about whether or not Raya was on her way back down motility-wise, they were erased by the sounds of her vomiting at 5:30 this morning. We've seen clear changes in her mood (i.e. mood swings, bursts of high energy followed by the need to lay down and rest, crabbiness, etc.), changes in her sleep patterns and waking up at night again, major decrease in appetite, difficulty swallowing, less verbalization, increased sensitivity to sound and light, decreased attention span, and just overall not as happy as she was during those 2 really nice weeks she had earlier this month.

Last night, I gave her the evening dose of one of her meds and her sleepy medicine and then sent her to bed. As she was leaving the kitchen, she put her hands on her belly and asked for a Farrell bag. I was in the middle of about 10 things so I told her I'd connect one to her stomach later. As is often the case, unfortunately, I forgot, so I felt really awful when I heard her…

Could you do me a favor and be more like a car, please?

A week or two, I started to worry a little bit about my car. There wasn't anything particularly alarming going on while I was driving it, but it just felt a little off. I talked myself out of worrying by rationalizing the weird things that happened. I got used to some of them and started to feel like they were normal. I told myself that others were probably because of rain or that we were getting close to needing an oil change (and close to 100,000 miles), but really, I knew something was going on with it.

Over the weekend, the check engine light came on. It happened when I was coming out of the drive-thru at Chick-fil-a, after getting Raya some fries to eat at her friend's birthday party so that she wouldn't be sad when everyone else was eating pizza. I took my foot off of the brake and put it on the gas pedal and started to accelerate around a corner, and it acted strange and the engine light came on. From that point on, I'd put my foot on the gas to accelerate …

Weekly update

Sunday:

Last Sunday was our 13th anniversary. We celebrated Saturday night by going out to the same restaurant that we went to for our 1st anniversary. It's our favorite special occasion restaurant and we were SO excited to go there again. It had been way too long since we had been there! Since it was a special occasion, I even showered and put on makeup. :)
Sunday after church, we went to Donny's parents' house for dinner to celebrate his mom's birthday. Raya has been doing SO well lately with being happy, keeping a more even mood, and eating food, and Sunday was no exception. She loves being around her cousins, aunts & uncles, and grandparents, and there was food that she was able to eat, so she was a very happy girl. She sat at the little table with Kaida and a couple of cousins and ate more food than she's probably ever eaten at a family gathering.



When all was said and done, she had eaten some slow cooked pork, a couple of big Fritos, some nibbles of a cou…

A sad goodbye to a dear friend

About 2 1/2 years ago, I got an email in response to a blog post I had written. The email was from a sweet young lady named Danielle, who had some similar medical conditions to Raya's. Danielle was 24 years old and had been through some incredibly difficult struggles in her life. She was very open with me and with the world through her blog "Thriving Anyway" about her struggles early on in her teenage years with eating disorders, which led to gastroparesis. Combined with other chronic illnesses & conditions that she was diagnosed with along the way (Ehlers-Danlos, mitochondrial disease, autonomic autoimmune ganglionopathy, developmental disorders, and sensory processing disorder), she had the deck stacked against her in a big way, but she never let those things overtake who she really was.

From my first interactions with her, I knew Danielle was special and I felt a deep connection with her. I have not met many people as articulate, passionate, hopeful, and intelli…

No news is good news

I haven't updated in a while but it's because I didn't want to jinx anything. Raya has been feeling really good for about the last 10 days. When she feels good, it carries into every aspect of her life and everything is just better for her and easier for her (and for all of us).

Last Tuesday's therapy appointment went much better than the previous week's appointment. (the one where she puked because she was having major anxiety over knowing we were about to go in for a blood draw) She was a little reluctant and insisted on bringing her blanket and holding it while she did her therapy program, but she was cooperative and in a pretty good mood.

Wednesday (9-3) was a pretty amazing day, and was the day that she really turned a corner. She went to school in underwear for the first time ever, and went the entire day from 8am to 7pm with no accidents. It was the first time she had ever worn them all day, and the first time she'd ever left the house for that long with…