WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, May 5, 2012

I Don't Want to Jinx it but....

2 days in a row that Abby has been wide awake and no nap needed or wanted. Her skin is clear of rashes(90 percent), very low to no proteins from her kidneys..

To a "normal" this is probably not that big of deal, but for us it nearly crossing into the level of miracles.

No Miralax,corn,soy,dairy,shellfish,nuts,gluten(and other removals) less then 10 percent fat, no vitamins, no supplements, and we finally are seeing the payoff.

I admit, after the kefir attempt, the Mito cocktail attempt, the GI Elecare(BIG mistake!),Miralax(PEG allergy) I was starting to lose my forever optimism about Abby. But, persistence and she is stable- better then stable really.

She actually ate prunes- for a kid that was in agony from drinking water in October, and watching her eat prunes with no problem at all- well, I will remember that for many days to come.

A parent on one of groups was talking about watching his son suddenly do so much better- and how hard it is to not start thinking it was all going away.. He is right- after 17 years I know Abby will never be a "normal" but, I also still strongly believe there must be a way to keep her doing better then most with this disease.

I still make myself tell myself that I cannot undo the depletion- no amount of brilliant kitchen chemistry can make it go away.. but another part of me see's her having low levels of mitochondria like having a terrible bad back. If you see a spine Dr. he will tell you that he has seen MRI's of patients where the MRI looks terrific, but the patient is in hideous agony. Then he has seen MRI's where the spine is so diseased and so deformed that the patient should not be walking, yet that patient will be out running marathon's or farming-

The human body has a lot of secrets-

My Gram was a walking miracle- cancer multiple times, spinal bifida(mild) surgery, - the list of medical illnesses was mind blowing that she managed to outlive- she was unique. She outlived her entire family. The Drs. probably told her a dozen times and parents that she was not going to live a long life- but she did.

Part of me, struggles when we see these moments of hope- in 2 days Abby and I have already started planning for College in the fall again- the little voice in me is reminding me that for the last few years now, these brief vacations of health don't last- yet, the other part of me already has plans for a new laptop bag for her, where the best parking would be, some new school clothes for her...

When she crashes again- I always worry I am going to be so disappointed I give up- but you know, I haven't yet.


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