Our bags are packed, our prayers are strong but our faith in healthcare is diminished..

Annabelle did it! She made it thru the weekend safely (knock on wood), and were a 'go' for tomorrow's big appointment! After a week of little sleep / rest, lots of agitation, an appetite that moves from one spectrum to the other, BMs 10+ x day and then other days she has 0 BMs for several days.. the restlessness and most unfortunately, the INTENSE emotional roller coaster this whole ordeal keeps her on. Somewhere right in the middle of them all, there is a balance of what a normal 2yo looks like and how they behave. Those moments we grasp and embrace - all the others, we hold our breath and watch the calendar for January 27th. We need tomorrow more than anything, I have held my breath for nearly two weeks watching Annabelle finally collapse and she's made it.

Today though, it's coming. 
The downhill spiral fall is finally here and were riding it out. I think we have enough time to make it to our appointment tomorrow vs another hospitalization, and hopefully they will be able to gauge more by seeing her in a crisis state vs. healthy semi-normal 2yo on a great day.


Annabelle isn't running or moving much any more. She's finally hit her wall and she's starting to fall quite rapidly. She isn't sleeping much, and I hesitate to even say she's 'resting', but she is holding on and for that we are grateful. Only a few more hours baby girl, you can do it..

AK leaves us early-early in the morning to head out of town again, so I will be keeping him updated via Skype / Texting. I know it kills him more than anyone else to not be able to attend all our appointments. Our nurse will be at our house by 6am and we'll begin the day by dropping Mady off at school bright and early and hitting the road.

We have no clue what to expect quite yet. We have lots and lots and LOTS of wishes and answers to gain from tomorrow, but experience has ruined that hope for me. I hate this state that I am in right now. I want so badly to eagerly anticipate tomorrow's good news and promised hope; for a doctor that wants to help and cares, for an experienced physician to see Annabelle for the strong but broken little girl she is and desperately do what they need to help her. I've worn those hopes and prayers on my sleeve too many times (every single time) to believe tomorrow will actually go in our favor. The medical world has absolutely ruined all my faith in humanity and 'Health CARE' - ha, a darn joke it is. I used to believe doctors and medical staff went thru Med School to HELP other people, but I've come to learn that in order to succeed in the business, you must first drop your soul at the door and keep your nose in a black and white textbook to fit each patient into only a diagnosis written and one you're familiar with. We need a doctor that is willing to see Annabelle for a sick little girl, read and recognize every single lab, sign, symptom, medical experience that explains the Working Diagnosis we believe Annabelle to have. We have collected 99% of the information we need to secure this diagnosis, we just need a doctor to agree and sign on it so we can move onto treatment. I am traveling with more medical records, documented journal entries by an array of her care providers, hospital notes (the freaking jokes half of them are), every single result of blood work ever run, videos, written summaries by physicians, assessments by therapists summarizing her congnitive / developmental delays etc. There are 6 books total of Annabelle's records that never collect dust in our home. Everything is traveling with us tomorrow. We are out of time to play games and plea - it's time to see black and white and help this poor child.
This beautiful, amazingly incredible daughter of mine.

Transplant Considerations: 

With luck, Annabelle is likely still a candidate for a Partial, Living Donor Liver Transplant. We will remove and replace the portion of Annabelle's liver that is poisoning/killing her, cross our fingers and pray everything takes and watch this child LIVE! Of course this comes with the flood of prayers for a positive match for a generous donor that is willing to help save this little girl.

The longer Annabelle struggles with this disorder and her body continues to poison itself with ammonia, the more damage she will continue to do to her liver.. within time the damage can (slowly or quickly.. we have no way of gauging) ruin the entire liver and eliminate the opportunity for only a partial transplant. She will then move to a list and begin our wait for a full liver transplant from a donor. Obviously this option comes with an incredible wait list and much less hope.

*Silver Lining* If / when sweet Annabelle receives a new liver and if/when everything takes and she accepts and heals safely, Annabelle will be able to live a long, happy, normal life. The food restrictions (beside allergies), the 20hr tube feeds, the constant medical care, the dialysis (this is likely our next care plan), the array of nauseating medications, the face mask while in public places, the lethargy, the 'highs', the pointing / staring / curious strangers, the sleepless nights, the pain, ohhh the pain, all of it will be gone. Annabelle has the potential to live a wonderful, healthy, NORMAL life. We just need to get there. We need a treatment plan. We cannot move towards a treatment plan without the formal diagnosis authorized by a bio-chemical geneticist.

Tomorrow we are seeing the geneticist we pray will help us achieve that diagnosis. My prayers are unending but my heart aches at the anticipation of what tomorrow could look like for us.

God please, if you can hear me and everyone else calling your name this evening, please please Father, wrap Annabelle in your arms and deliver the knowledge and compassion to the medical team we meet tomorrow. Please, give them the understanding to see our plea for help. Restore our faith in this health system and for the wonderful doctors practicing medicine and doing your work out there, send them our way. Place Annabelle in front of their eyes and let them help us. We need help, we need our prayers answered and we are trusting in you for the guidance. Annabelle has such an amazing purpose in this life, I know she does, but I also know it will be delivered in this life as she grows into a beautiful young woman living the life we know she deserves. Heavenly Father, hear our prayers and grant Annabelle the comfort she deserves.. and if we have any wishes left, if you could grant me a little more trust and understanding thru in this nightmare, we could really use that too. Amen.