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.

Friday, December 14, 2012

My two Realities.

For the last month Abby has been struggling. Between the back to back colds, a violent reaction to Rice Dream we have seen all those symptoms that scare me. The proteinuria, the edema, the fatigue, the wobbles, the pain, and I have these moments where I wonder, am I facing the reality of what is wrong with Abby or not?

We all know someone who has a very sick kid who goes to Dr. after Dr. hoping for a cure. They don't "see" that their child might be past the point of no return. Oh the pity I have for them. I always think, "That poor Mom cannot face the reality that it is just a matter of time."..

Over the last year we have seen for the most part nothing but improvements. At times minute, but still..

Then this crash. Like everyone else, Abby crashed with the season change. It gets her every year.

I have two realities.

1) Project Elimination. Remove anything that makes Abby sick. For the most part this has worked super well.

2) Maybe it is Mito? and all our efforts were simply a fluke. We don't control her health the Mito crap does.

I don't want to be that parent that everyone pities for not facing Abby's reality.

I don't want to be that parent either, that gives up and says well," she is gonna just keep getting worse, I might as well let the Drs. start drugging and tubing her."

We remind ourselves daily, Rome was not built in a day. Rarely is anything easy that is good. It is okay to have self doubt, but not okay to quit.

For the last month we have been back to Limbo land. On some of Abby's worst days we have talked about seeing a Dr. to see if there is something they can do- Abby's says "why?" We have tried that and weathering it out at home is safer for now. It also works for Abby's reality. On the better days we hold on tight to project elimination.

So we weather this flare,crash. Keep moving forward with our core plan of good nutrition, good sleep, no stress. We wait for the bounce.

Though this is a long long flare, it isn't nearly as bad as last year. We hope that is because of our efforts and not a fluke. Abby is right, going to the Dr. would just make things worse- the germs, the effort, the lab work- it all takes a bite out of her energy.

Abby has ALWAYS been her worst this time of year. Even during her best years she struggled Sept-December. It is just Abby. She is stronger this year and we are smarter.

We have seen the glimmer of her bouncing the last couple days and we are determined to be patient.

No idea which reality fits, but it seems I get to pick and I chose Project Elimination as does Abby.


Laura Cox said...

I do hope Abby feels better soon! Will has been in a funk as well ( but not as bad as previous years ) - like you say, this time of year can be hard on them.

Jenna said...

I am sorry you are struggling with this. For Matt he does better this time of year. He is worse in the summer. I hope that Abby starts feeling better soon, I think that there are thin lines in a lot of areas and when it comes to realities with your children they are lines that parents will always move. I don't know if i have ever pitied a parent for holding on to hope and trying. They will look back and know that they did everything they could, not just that there are a few stories in history where those parents not only changed the life of their child but they changed the life of many future children with what they learned through their child.
I also just wanted to put this out there, I know that you probably already know this but here it goes. With a g-tube you don't have to have chemicals and formula. You are able to do a blended diet and only give Abby the things that make her feel better. It just helps those days she isn't strong enough to eat and drink. Matt is doing great since we got the tube, he still has bad days, he still is having regression, but over all he looks and seems so much healthier. The dentist yesterday was very pleasantly surprised about how good Matty was looking and acting.

Diane said...

Thanks Jenna.. I had read that folks use the tubes for water or meds or liquid purees. But, Abby can swallow great. It is the digestion that is an issue. :-) The GI said to avoid the tube because it would make Abby's body dependent based on her type of mito. So no tube. His thought were if it were life and death we could try something but until then, it would just make her worse faster- each Mito is different, and needs a different treatment. This GI "gets" it. The good thing is Abby is older and done growing- she can lose a lot of weight or go much longer with a poor diet or deal with the pain then a little one that needs a lot more healthy,fresh and good food since they are growing. Right now, quality of life is not an option since without a doubt the tube would cause more harm then good in Abby. Mito stuff is so different for each case- I know your experience has been great and he has been doing so much better with his.

Diane said...

Well- here's my fingers crossed that the weather settles and Abby and Will both have a fast bounce to have a good holiday! Hugs!

Kristy Williams said...

Hope the bounce bounds back quickly for Abby and you continue to not only trust your mama gut, but listening to Abby. Always shooting for the stars! Keep that hope twinkling. :)

Anonymous said...

Can you find a olive leaf extract that she can use, that might help her out a lot...it does us. We really get flu season here...live way up north near Canada.

Also since she is not yeast sensitive...she might do really well with beta glucan. We use ONLY the ones from BetaForce.org because it is the purest and strongest I can find. It is an immune modulator which means it helps the immune system to fight appropriately and correctly.

My fragileX kiddo is alive and kicking because of this wonderful stuff!!! It isn't cheap but we can tell within days of her goin off.

Saved my fanny too. My pressure cooker blew up all over me and I had 2nd and 3rd degree burns over a third of my body. I started immediately taking a high dose of it...and no infections and the burns healed quickly and with a minimal amount of scaring and I didn't lose mobility of my fingers!!! Great stuff!!!

The next day...my kids took out my pressure canners and they were gone....in the dumpster!!! Now I make bone broth on the stove or in a big roaster. It works....lol.

Diane said...

not sure on the olive leaf- we have tried a lot of olives and olive products and all were fails for now.
But I am definitely going to look into the beta glucan! That stuff sounds like it really could help the constant illness- I want to say someone had told me about it before- so hearing good about it again- well I need to investigate! Great tip!
Oh no, that is my worst nightmare that my pressure cooker will blow! I use an electric one but I was terrified of them for years because I have heard so many stories- so glad you healed up!

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