The latest summary on Baby E.

Thanks to David for highlighting my blog. Since he linked to the 15-month-summary I wrote back in November, I wanted to post an update to link from that post.

When SIL, BIL and their family were here recently, SIL commented how different Baby E's entire demeanor is now than it was in December. She's so much happier, more social and interactive, energetic, and sunnier in demeanor than she was a few months ago.

Even though she still has a lot of reactions and symptoms--some of which we're unable to pinpoint the causes of--she's still doing so much better.

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In October and November she was screaming inconsolably at least 30 to 50% of the time. She was fussy, lethargic, grumpy and uncomfortable most of the rest of the time. Her truly good days were far and few between, and what would have been a relatively good day then would be a "not feeling well" day now.

The reflux medicine has made a huge difference for her. Even just having her off it for a few days when she started reacting to it, I've been seeing more of the short-fused, fussy, grumpy and uncomfortable baby again. I really don't want her to go back to that as the norm. Hopefully she will be okay with this new batch of medicine, or we will be able to control her discomfort with Zant@c instead.

Thickening Baby E's beverages has made a big difference too. She doesn't choke so often, and she no longer sounds congested all the time.

The other thing that I think has made a big difference has been raising our level of caution about incidental exposure to E's allergens. Everything--food, toothpaste, laundry detergent, craft supplies, toys, etc.--comes under scrutiny.

If it has even traces of E's allergens in it, it either doesn't come into the house or it gets treated like a toxic, dangerous substance that can't come near anything Baby E might touch. If we have people over, we provide the snacks or check labels as it comes in the door. Anything (especially anything crumbly or drippy) with corn, soy or coconut in it goes immediately back out to the person's car, unopened.

We've discovered the hard way that we can't just stick to a very limited diet with Baby E. If she eats any one thing too often, she's likely to develop an allergy to it. So we have to rotate foods and try different things more often than we might otherwise choose.

Anything that seems at all doubtful is being added carefully, one thing at a time and ideally not more than one item per week. But even with that precaution we get frequent mild reactions.

Sometimes it's something that has been safe dozens of times before, and this time we happened to get a batch with some kind of cross-contamination or an undeclared ingredient change.

Maybe this batch of organic carrots was washed in citric acid or came in contact with something that had been treated with soy- or corn-derived wax. Maybe the meat processor decided to start washing their machinery with a disinfectant made from one of E's allergens. Maybe that pear or tomato was ripened using corn-derived ethelyne gas.

We suspect that Baby E has one or more allergies that we have not yet identified--it could be a food, something environmental, or who knows what. Since she's had positive skin tests to at least 8 different things, but negative IgE blood tests to everything, it will be interesting to see what the allergist says as we further explore her reactions.

Since her severe face rash and swelling during the endoscopy in December, she now gets rashes on her face very easily. That has become a good indicator of her mild allergic reactions.

Most of the time now, Baby E sleeps through the night. She has a lot of mild to moderate reactions (including rashes, itching, occasional swelling, congestion and gastrointestinal symptoms), but hasn't had a really severe reaction for weeks.

She doesn't feel well sometimes--still too much of the time, we think. But generally she is happy, bright, energetic, interactive and loves life.

We don't have all the answers yet. There may still be other things unrelated to allergies (besides the reflux, aspiration, and anemia) that we haven't yet figured out.

The GI specialist wants to do another stool test to check for sucrose intolerance, but I'm guessing that will come back negative.

She isn't consistently getting any of the symptoms we were seeing from just eating normal amounts of unrefined sugars. The sweet-smelling malabsorptive-type stools seem to be connected to her low-grade allergic reactions, and to consuming certain foods (particularly plums, I think--which were probably coated with corn-derived wax that wasn't completely eliminated with washing and peeling). That's encouraging to me.

I've had to come to terms all over again recently with the fact that we probably will never get to a point where things become static and we can completely or almost completely keep E from having reactions. But I think I'm okay with that now.

I'm just glad she's so much better than she was.

It's interesting to look at the symptoms Baby E had when being regularly exposed to high amounts of allergens and dealing with a lot of discomfort from the reflux, etc.

She was losing skills, regressing in speech, becoming antisocial, screaming and flailing for hours at a time, sometimes sitting staring into space or barely responsive, being extremely picky about foods and textures, failing to gain weight, getting wildly upset by the slightest things, and sometimes engaging in repetitive behavior such as banging her head with her fist.

She still does those things if she gets a moderate to severe allergic reaction or is in a lot of discomfort. Otherwise she's perfectly social, interactive, bright, intelligent and very normal.

I have to wonder, though: If we hadn't been able to figure out that allergies and reflux were issues for her, what would have happened if we'd kept feeding her the problem foods and left the reflux untreated? Would she have descended gradually further into the withdrawn, abnormal behavior?

Even if we'd eventually figured out her issues, might some of the damage eventually have become irreversible? Would she have dropped so far in her development that she would have been unable to catch up? Or could the patterns of behavior have become so deeply ingrained that they became normal for her?

If we had been unable to figure out what was causing Baby E's discomfort and other symptoms, would she have been diagnosed with failure to thrive, autism, asperger's, sensory integration disorder, oppositional defiance or some other similar condition? Doctors were already starting to mention things like SID.

When a young child is experiencing intense uncomfortable sensations, it will show in their behavior--perhaps in unexpected ways. It's hard enough for an adult to function and control their behavior when in pain, itching, experiencing migraines, having allergic reactions, etc. What must it be like for a young child who doesn't understand what's going on, or perhaps has never experienced anything different?

I thank God constantly that we've been able to find so many causes and solutions to help Baby E.

The last week or so, I've been feeling that it's easier to divide my focus and energy between the various household and family needs. Baby E is still essentially a special-needs child, and her care, diet, etc. will probably always require extra energy. But most of the time, at least at home, I think we're able to give her a pretty normal life.

And I'm slowly learning how to meet her needs without making her too much the focus of the household. I'm finding ways to make time to homeschool AJ and M&M and focus on them, while still taking care of household tasks, cooking hypoallergenic meals, etc.

I still have a long way to go, but I think we're on the right track toward learning how to balance our life and family.

Unfortunately, at this point it involves getting very little sleep. :) Hopefully as I improve in my time management and balancing skills, that will improve.

I fluctuate between feeling discouraged and overwhelmed, and feeling hopeful and positive. But through it all God sustains me and gives me strength.

Today I'm feeling encouraged.