Oh What a Night!

We have certainly had a lot of them since my last update on Ellie, and we certainly have had very little sleep since then as well. At the end of December I had great hope that this year would be relatively uneventful compared to 2010, and so far January of 2011 has brought in the New Year with a definite bang. Elianna did so great with her previous food trials, but the looming factor has been this nasty corn. Corn is in everything, if you did not already know that. And Elianna's huge love for paper products as a dessert has not been helpful. Fails in the past that we can now attribute to corn include the following: disposable diapers, cardboard boxes, adhesives, board books, infant Tylenol, bath soaps and shampoos, just to list a few. Oh yes, skin is the largest organ and it absorbs like nobodies business. If you ever doubted that and the effect of things put on your skin, all you need to do is watch an FPIES child do atopic patch testing and scream for two days, or give them a bath from the head down with organic baby shampoo complete with wheat protein (been there, done that).

In addition to the corn, Ellie has enjoyed a diet of hair and fuzzies. This has led us to investigate a disorder called Pica, but since she is not ingesting amounts that are harmful I can not put too much energy into another diagnosis for a child who is 18 months old and has only a handful of pit fruits that she can eat. Having food issues does seem logical, regardless of the additional problems. The doc mentioned sending her to Occupational and Speech Therapy for Food Therapy but since we really don't have anything to feed her that seems like a pointless expense right now. She is doing fine spooning herself ice chips and puree that we give her, so the texture issues will have to be resolved with time.

At the end of 2010 we were very excited to exhaust the Plum (Prunus) botanical food family by calling safe apricot, peach, nectarine, plums of all kinds, cherry, and homemade almond milk. These results became a little muddied the first week in January when she began to have symptoms of a fail, until we traced it back to a baby wash we had used on her a handful of times that contained wheat protein. This seems to have begun a January list of fails that are becoming exhausting. And I don't find it coincidental that ever since we stopped diluting her corn based formula with almond milk and returned to just formula, she has not appeared to be completely 100%. One of the many things I have (re)learned with the help of FPIES: no such thing as a coincidence.

Life Continues: A Jump to the Present

From September until now, life has continued to push forward. Elianna has successfully passed and can eat these foods now: apricots, peaches, plums, cherries, and nectarines. She has had small 'licks' of blueberries and grapes, but not enough to call them a pass. I spent the last few months canning, freezing, drying, pureeing, fruit leathering, and whatever kind of preserving I could think of while the pit fruits were still in season. All I kept thinking about was what were we going to do when they were out of season and I had nothing to feed her? Thankfully I grew up in Northern California and had access to fruit straight from the orchard. Family friends have blessed us tremendously with cases of fruit 'to feed that baby'. Not all organic, but not processed or coated with anything in any way. Best of all, the fruit helped solve the problem with constipation.

In the meantime she ate a crayon and had a reaction. Safe, non-toxic crayons have soy.

She began eating large amounts of hair, fuzzies and string. We are now watching and wondering if it is PICA.

We finally head back to the allergist for atopy patch testing. (More on that in another post)

Her eczema has become full body. Some days she just has reflux and stomach pain and we cant figure out why. And she has had lots of diaper rash problems that are getting worse.

We realized that over the counter tylenol and motrin make her vomit and we need compounded medications for her. And I have begun the search for a safe probiotic for her.

She sucked on the adhesive on a cardboard box and had a mild reaction.

I have had to cut back at work in order to provide a predictable schedule for her, and have her home where we can practice eating. It's hard to give a toddler a tray full of puree to explore when not at home. It's hard to take her to someone's house and say 'do you mind if I vacuum your floor?' And it's hard to work full time while learning to be a suburban pioneer woman because your child can have nothing from the store.

Meanwhile the medical bills are rolling in and copayments continue. Now the GI wants us to send her to speech and occupational therapy for food therapy.

And I am thankful. Thankful that she has never been below the 90th percentile. Thankful that we now have 5 safe foods. Thankful that she is growing, less puffy, and turning into quite the little toddler full of personality. She never stops talking (we think she is fluent in Chinese). And her laughter is contagious.

We are making the necessary adjustments in our family, and working hard to accept the changes. They are not easy, and some days are definitely harder than others. But we have hope.