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 12, 2012

Just a couple more years...

I have been feeling so fortunate with Abby lately, that it has made me think more about what could be in her future. Back to College? Maybe a husband? Children(I am entitled to dream about it). Though I am more then thrilled to just think about her feeling well, and smiling- that is enough.

Don't get me wrong, my cup is half full and I plan on keeping it that way, but I cannot help but wonder about the teens I have met online with Depletions that are most similar to Abby. It seems that they had problems off and on but controlled in their younger years, but after 15 things started to go wonky.

In my head, I just keep telling myself if we can make it without any major interventions past 21, we are going to be in the "safe zone."..

Bordering on "magical thinking" I suppose- but, after seeing the tremendous improvements in Abby, maybe it is possible.

Abby had another terrific day! The last few days she has had that allergy/kidney edema and puffy, circled eyes. IT fads after a few hours of being awake, but it does keep me monitoring her more. That poor kid is probably sick of me staring at her throughout the day and taking visual diagnostics of her! :-) I suppose, the proper thing to do would be have her dip for protein, but since she was near clean at the Nephrologist on Monday- we are living free this week. Knowing if her proteins are up, isn't going to change anything- so why torture ourselves? The Neph made it clear there is nothing we can do.. Be it either her kidneys or allergies the only thing that has improved them is eliminating triggers and allergies and we are aggressively already doing that.

Every day that she is doing better she is able to more easily recognize problem foods and ingredients. It is getting easier to figure out the cooking and we are trying to increase her protein intake(blessed by the Neph).

Next up is beginning the clean out of fragrances. Not going to be easy! Both Abby and Derek are very fragrance sensitive and I have tried to make sure that the fragrances I use don't upset them..but I cannot help but wonder if I remove them if it would reduce even more symptoms.

The good days she has had recently make me really doubt even more that the depletion is a primary disorder.. since she doesn't have any of the mutations they have found to cause depletions it is becoming way easier to stop worrying constantly. I cannot decide if it is a good thing to put the depletion on the back burner or not.. but, at least for now it has done nothing but good. Less is truly more with Abby. Abby said the other day at the Dr. office, that if we had moved forward on the elemental feeds or feeding tube or even an IV, it might of killed her. The corn, the PEG allergy, she would have been exposed 24/7, just the tubing that touched her during her scope rashed her and swelled her up... if not killed her she certainly would have gotten much worse. Since some of the Dr.s feel strongly there is no way she could be "allergic" to their allergy safe formula's I doubt I would have gotten some of them to believe that it was hurting her- they would have thought she was just progressing. A very scary thought indeed.

A good lesson to listen to our Mom instincts.

Hoping for another good day, but feel far more confident that soon, I will be surprised when she is having a bad day, instead of being surprised by her good days.


Jenna said...

That is a really scary thought. It is scary how often I am sure that happens. I am so glad to hear that Abby is doing so much better. It is so exciting and I really hope it continues. I am really glad from what I can tell Matt doesn't have food allergies. The formula change has been amazing. His body does so much better when he is mainly formula fed. The problem comes when he eats, but even when he eats it is mainly fruits and veggies. They still mess him up.

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