2018 is our Year!

Your prayers were heard, answered and our family is forever grateful for your faithfulness to our sweet girl.

We’ve been quiet for almost a year now. So much of me as a Momma was broken and defeated by the years this little girl takes from us - the hospitalizations, surgeries, appointments, scheduling, 6yrs of sleepless nights.. unanswered prayers.. I hit a wall about a year ago and shut down when it came to Annabelle. The news that her conditions and diagnosis were genetic, and came from me, were far harder to process than I ever imagined they would be. Smiling and being brave as I shared “genetically, it all came from me.. but that’s ok, now we have our answers!” was a lie. It wasn’t “ok” with me, the amount of guilt I have filled myself with over the last year is unmeasurable. I needed time to reconnect with Annabelle alone and for us both to find or place together. 

Here’s a recap: 

Last summer we learned Annabelle had two markers in her Genetic Testing: POL-G Mitochondrial Disease and MCAD Metabolic Disorder. 

November we were able to meet with the #1 Human Geneticist in the country that specializes in both these conditions as a combination. At that time Annabelle was formally diagnosed with Secondary Mitochondrial Disease, activated by her global GI disorder of Eosinophilic Esophaghitis. At the time of diagnosis, Annabelle was given a Mito-Cocktail that involves 9 medications she takes daily. To have a treatment plan for Mitochondrial Disease is near impossible, but Annabelle got one. Even though it was a long shot that it may work, and the cocktail was truly just the doctors “best guess” - we were grateful for the opportunity to at least have HOPE for Belle. 

Since November, she has done amazing. And by amazing, I mean Annabelle is growing, flourishing and healing faster than I ever knew possible! 

She no longer has any pain.

She restfully sleeps all night for the first time in her life.

She smiles daily. 

She laughs, plays and makes new friends.

She has hope for herself.

She rarely ever uses her wheelchair.

She doesn’t take feedings thru her feeding tube.

Her GI system functions the way it should.

She hasn’t had any seizures.

She balances her body temp in extreme cold and heat.

Her fingernails and hair is growing.

Her skin is healing.

Her weight and height is finally in a normal range, and steady.

She plays softball and gymnastics! Not just wear the uniform and support her teammates, she’s really playing the sport.

Annabelle, is a completely new, HEALTHY, happy, beautiful little girl. She is risen on the other side of the worst storm you could imagine. She should have never made it this far. The good lord tried to take her home multiple times but has let us keep her here with us. He has used Annabelle to shape so many people and help others. Annabelle is a survivor and the strongest warrior I’ve ever met in my life. She deserves this victory. 

So thank you - all of you, for your endless love and prayers. During the dark times, thru the tears we’ve shared, during the celebrations and now on the other side of our rainbow. Thank you.

This week, we’ve been in Cincinnati Children’s Hospital for a follow-up. We needed to perform an Upper EGD and change her GJ-Tube. This was her 34th time in the Operating Room. Among a few other appointments, we also met with our Geneticists to see how the Mito-Cocktail is working. 

Tuesday morning, while Annabelle was in the OR, Dr. Putnam met me in a consult room and shared devastating news. The EoE has returned, and it’s worse than it’s ever been since we’ve been a patient at Cincinnati. Our family packed our car and drove west KNOWING this would be a wonderful trip filled with only good news. I’ve waited to make a post and update on Annabelle until this trip bc I wanted to share the best news with you guys. Hearing those words was a hard blow. It literally made me sick and drop to my knees. For 7months straight we have quietly watched Annabelle overcome all her struggles only to learn she was deteriorating on the inside. 

Our efforts and treatment are not a fail, we will continue to medicate her using our Mito-Cocktail, but we have to diligently get the EoE under control. You see, her Mitochondrial Disease is what globally destroys her body and will take her from this world. The only way to stop the diseases manifestation is to control what sets it off - and that is the EoE. If we cannot regain control or the EoE, we will quickly lose control of the Mito all over again. The trick though is that we haven’t changed ANYTHING to cause the EoE to relapse. Nothing. If we had been trialing a new food, that would make sense as to why the disease is back.. but we chose in November to never do a food trial again in order to have total control over the EoE and Mito. Now, out of nowhere, we’ve lost control of it all. 

Our game plan is another long shot, but with enough prayers, I know anything is possible. We are going to remove wheat and soy from Annabelle’s diet and schedule the OR again in 90 days to see if we’ve regained control of the EoE. Meanwhile, we will cross our fingers that the Mito remains stable. If this plan doesn’t work, Annabelle will have no choice but to stop eating food and become 100% tube fed again. This time, I don’t know if/when she’ll get food back as we have so many times before. We’ve known how lucky we are for such an impressive diet while battling EoE, but darn, this news is still tough. Especially to a 6yo. 

She took the news well, she understands her boo-boos are back, but her spirits and faith is so high, she couldn’t be discouraged no matter how hard you try. That’s what the last 6mon have done for Annabelle - it’s recreated a whole new little person with restored faith and filled with bursting love and happiness for all things around her. This attitude and our prayers I know will get us thru this small set-back.