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Saturday, January 5, 2013


January 3, 2010 (the {somewhat} calm before the storm)
January 18, 2010 (first hospital admission)

I've told myself so many times in the last 3 years to just stop digging. Stop looking for that oh-so-coveted "golden diagnosis" that would neatly tie a nifty little bow around everything we've dealt with for 3 years now because if we haven't found it yet, we're never going to. There just ISN'T one. There's a rather long list of things that we thought might be "the one" and later determined otherwise. Pyloric stenosis, motility disorder, anatomical abnormalities, obstructions, eosinophilic disorders, cyclic vomiting syndrome, gastroparesis, metabolic disorders, mitochondrial disease, genetic syndromes (she has an anomaly but no associated syndrome with that anomaly...), brain malformations, IgE-mediated food allergies (oh, wait, after multiple attempts, we DID get positive results. Extremely MILD positive results...), tethered spinal cord, celiac disease, and so on and so on. These are just several of the ones that I know of. I'm sure there were others that her doctors discussed without cluing me in. Some of these were hands down, no questions about it, completely ruled out. Others were decided against because of lack of sufficient evidence to support the diagnosis, or because her course of treatment already included the protocols for that condition so we couldn't get positive results if we wanted to. I am tired of the whole cycle. First, we think we might be on to something. We find tests to either diagnose or rule out whatever it is. We do them. We wait. The results are negative, or they're inconclusive. We shrug our shoulders and say, "Well, at least now we know it's probably not that." And even if we DID find something, what's the point anymore? We've already gotten her past the worst points and she's actually doing quite well now, comparatively speaking. What would a label change at this point? (aside from me being able to answer the question, "So what exactly does she have?" more easily)
The last 36-ish hours have been emotionally draining for me. And exhausting. Thursday night while I was trying to force myself to read my anatomy textbook, I took a little study break to look online for recipes to try with Raya. While cruising some special needs-related boards on Pinterest, I found a treasure trove of recipes for things I've been looking for, like crackers and baked goods, which are really hard to make without wheat/gluten, rice, oats, and dairy. After browsing a couple of recipe blogs in particular, I realized that the websites with the highest volume of recipes that would work for us were blogs about kids with a specific medical condition. It's one that I've heard of and I know what the acronym stands for, but I had never bothered to even look into it because the name of it has a part of the body that has not really been a big issue for Raya.

Out of curiosity (and because I love reading blogs about other medically complex kiddos) I started reading about the kids and about the condition they have. I started scratching my head a little. I started clicking on links to foundations related to that condition. The head scratching intensified. My heart pounded a little. My mind was flooded with memories of specific episodes from the early months that were evoked by the things I was reading. (violent vomiting episodes ending in her going pale & limp, to be exact) Some of what I was reading didn't really apply, but there were statements here and there that may as well have reached out of my computer screen and slapped me across the face. I started emailing people who could put me in touch with parents of children with that condition. That little part of me that has always wanted an answer that doesn't start with "well, we don't know for sure but we think it might be..." started to get excited thinking that after 3 long years, this might finally be it. I drafted a long email to Raya's GI doctor explaining what incidents felt to me like they could be indicative of this disorder and the things I had read that supported my theory. After re-reading it several times and fine-tuning it, I clicked "send". For some reason, I always get nervous when I send her emails. I couldn't sleep Thursday night. Even after I went to bed, I couldn't shut my mind off, so I kept reading. I read personal accounts of what this condition did to other children. I read informational websites from foundations dedicated to educating people about the condition. Finally around 2:00, I called it a night and forced myself to lay still until I fell asleep.

Yesterday morning started with an early trip to Raya's 3 year well check, during which we discovered that she had an ear infection. I felt bad because I had no idea. Now we can safely assume that she did have an ear infection on Christmas that started to go away on its own but then came back, hence the increase over the last few days in her stuffiness and junky sounding cough. We also reaffirmed that she has a high level of anxiety when we have to go somewhere in the morning, no matter where it is. I'm not looking forward to that part of having the kids go back to school on Monday.

After the doctor's office and grocery shopping, I sat down to study the nervous system for my anatomy test that I have to take today. I just couldn't keep my mind on the subject matter though, in spite of the fact that some of what we've covered this week is helping me better understand sensory processing disorder and I do find it to be interesting material. Regardless of that, I just couldn't stop myself from digging further into the disorder I had been researching. I found a lecture on YouTube about it and watched the entire thing, hoping that it would clarify things for me. Instead, it made me doubt that Raya fits the bill for this disorder. The excitement of thinking that I might be onto something quickly turned into doubt and disappointment. My suspicions about the disorder started to look less and less likely based on some of the things this expert was saying, but at the same time, I also recognized that he was addressing the severe end of the spectrum and that maybe not every patient experiences things to that extreme. It was confusing and frustrating.

In the downward spiral of emotions that followed, I wanted nothing to do with anything that was in any way special needs related. I was quickly reminded that this vicious, agonizing cycle is the very reason why I don't dig for a diagnosis anymore. I wanted to stop wondering. I wanted to focus on my schoolwork, learn what I need to learn for the week, and prep for my test, but I just couldn't. I was crabby, tired from having been up so late the night before, and just suddenly wanted a vacation from everything right that instant. That of course isn't an option when you're the mom of 4 kids and the dad is working a late shift, so I fed the kids a dinner (a rather lousy one) and we snuggled on the couch and watched Phineas and Ferb until it was past bedtime. I left Raya on the couch because she fell asleep, and sent the other kids to bed.

I tried again to focus on my studies. I halfway watched another YouTube lecture on the histology of nervous tissue and then I heard a large "thud" from the living room, which I soon realized was the sound of Raya falling off the couch. Her feeding pump was about halfway through a feed and when I picked her up off of the floor, behind the dazed and confused look on her face, I could also see that she wasn't feeling well. Her eyes were red and she just wanted to sit on my lap facing me and lay her head against my chest. Her body was tense and her belly was a little bit distended, so I asked her if her stomach hurt. I had been asking her a dozen questions before that and she didn't even attempt to answer any of them, but when I asked her if her stomach hurt, she nodded her head yes. I asked her if her tubie hurt or if it hurt inside her stomach (those are the specific phrases you have to use in order to have a chance of getting an accurate answer). She pointed to her stomach, but not her tube, so I asked her again, "does it hurt inside your stomach?" and she nodded her head yes. I put her on the couch and connected a Farrell bag to relieve the pressure in her stomach and let her watch another episode of P&F, which thankfully has taken the place of Backyardigans for a while.

Since she didn't want me to leave the room, I got out the iPad and started watching the lecture about nervous tissue again. Then Donny got home and we talked for a while, and I hopped back onto Pinterest to find more Raya-friendly recipes to try. That ultimately led me back to the blogs & websites about the disorder. I started getting emails back from the people I had emailed that counteracted a little bit of the negativity I felt after watching the doctor's YouTube lecture.

This morning, I got an email back from the GI doctor. I was surprised, as I've never gotten responses from her on a Saturday morning before. She thought that it was an interesting idea and promised to go back through Raya's records to see what she could find, and ponder it over the weekend so we can talk next week. She didn't remember the particulars that I had mentioned in my email but I didn't really expect her to. She's been practicing for 30 years and has seen thousands of patients, so I knew she wouldn't remember something from 3 years ago that was seemingly insignificant at the time due to everything else that was going on. And unfortunately, I think most of the information that would be necessary in supporting this diagnosis would have to be things that we had observed at home (such as the aforementioned vomiting until pale & limp episodes that haven't happened since she was very little). I guess I'll be digging through my records too.

So where am I now? Feeling yucky. I feel lousy about how very little time I've spent on schoolwork this week, no matter how good my excuses were. I feel lousy about how easily distracted I am and how little willpower & self-discipline I seem to have this week. I feel lousy about how little time & attention I've given the kids this week and how crabby I've let myself be with them, especially since it's been Christmas break so they've been home all day every day. I feel lousy that 3 of my 4 kids have awful sounding, junky coughs STILL. I feel lousy about staying up so late and sleeping in, and lousy about the fact that it's 4:30 on Saturday afternoon and I still have no idea what we're having for dinner and I haven't taken my quiz yet that's due by midnight tonight because I'm nowhere near ready for it. And I feel lousy about letting myself waste a lot of time and get my hopes up again about something that will probably be added to the list of things that were interesting possibilities but we don't have enough evidence to support. (which is why I haven't bothered to even mention the name of the disorder)

And there you have it: another aspect of the emotional rollercoaster that is the life of a special needs parent. The bottom line STILL is that no matter what we decide about this slim possibility (which probably wouldn't change much about her course of treatment anyway), Raya is Raya and we're doing the best we can with her.

(*PS: this is another one of those posts where I'm in no way asking for sympathy or comments about how wonderful/strong/amazing I am, I'm just frustrated & needed to get it all out.)

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