You're so brave and quiet, I forget you're suffering

My small hero is growing so quickly. She's laughing, learning, dreaming and falling in love with life in ways I always prayed she would.. She sees life with a very critical perception but somehow finds all its beauty still..

The last several posts have given you an idea on how Annabelle is doing.. Things have not changed for the better, her appetite is improving but her body is not functioning any better. 

Her fevers have ended, that's a plus.

She continues to have a persistent cough that is sounding more an more terrifying like EoE and less like a cold. She's wheezing and her energy is cut in half. She can hardly run across the house with dropping into a hellacious coughing fit.

We are having so much fear over her bowel functions. 

Months ago, Annabelle began to regress from potty training and started having accidents in her panties. We were so frustrated but worked patiently with her.. The problem continued to manifest over the same time the Eosinophilic disease relapsed. She is now confined to the point that she is no longer having BMs on her own. I spent an hour in the pharmacy yesterday, with a hoodie over my head and tears on my face... reading every label and talking with the pharmacist to find the best relief for my baby girl. I wanted a liquid stool softener, though I learned that would not help Annabelle. I did purchase two pediatric enemas, (in addition to several prescriptions of course). My hope was that the enemas would be more comfortable for Annabelle. The next day our nurse administered two of them with very little results.

Her lower GI is failing terribly, and fast. I do not know if the Eosinophilic disease is attacking and damaging her lower GI or if we have a different problem all together. Annabelle has had issues since birth with her lower GI system, losing her bowels has been a conversation that has never been far from our doctors mouths to us.. just as hard as I fought and prayed against a feeding tube, I am fighting and praying against a colostomy bag. My poor child's body is ridden of  this disease and the medical interventions to help her. My poor baby needs help so badly before we lose the opportunity to slow the destruction down :( She is so happy and confident though. She is so brave and quiet, I forget she's suffering

Happy St. Patty's Day!
Annabelle was able to visit many of her little friends and play dress-up.. After a few short hours though, with a shuddering breath, Annabelle came to my side pleading to go home. Before I could say a word, she began to say bye-bye to everyone in her path. She was playing and feeling fine as far as I could tell, until I hooked her to her feeding. Her feedings make her nauseated.. she often cries to tell me "Mommy, I HATE my tubey, I HATE boo-boo's" We do not use the word 'hate', in our house, but there is no amount of parenting inside me that will correct her from that statement..... because, I hate her tubey and boo-boo's too.

I took Annabelle home and she was very weak. She couldn't walk by the time I made it thru the door. She laid on the couch for a short time before she began to plead for me to snuggle her so she would feel better. I feel helpless during these times, but I provide my daughter the comfort of my presence, if only that comfort is a finger or hand to hold onto as the pain and sadness passes. She watched a movie and I gave her a warm bath. Annabelle fell asleep without a fuss. She was visibly saddened and I was secretly breaking for my daughter.

Paperwork is almost finished for Annabelle's biggest trip ever. We are praying with everything we have that she is accepted into the hospital and research center. This hospital will save her life and provide our family with the answers, hope, treatment and help we have needed for so long. The paperwork is a timely, exhausting process.. it takes weeks/months to complete and I am nearing the end. As things begin to wrap up, our fear begins set, "What if she gets accepted? What if Annabelle's dream comes true and she is blessed with the opportunity to find all the answers she needs? What if we finally get the chance to go to this hospital? .. .. .. Can do we do it?"

During Annabelle's one and only benefit last fall, I met an incredible man. It was late in the evening and he reached out to me to speak privately. His first words he spoke stung me like a wasp "I know. . I know what it feels like. I know what you're going thru and I am so sorry.. I know how badly you would have never wanted or ever believed this would happen to you. I have watched you mother your girls all evening with a smile but I see your pain when others aren't looking.. I know, I've been there too." I was speechless, but he was not. He shared every word and fear that my mind couldn't pronounce. I agreed with the worries, we both met with the opinion on how much we HATE this for our children and how horrible of a situation it is that we would never wish on our worst enemy. He did know. He knew exactly what it was like, the fear, worry, hate, bitterness, loneliness and most of all.. the feeling that helping your child is out of your reach and so unfair. He knew. His child was plagued with a brain tumor and endured more pain and scary months/years than I could imagine.. he disagreed, as parents, we both have done the same. Our stories are different but the emotion is the same. The love parents have for their children is endless and painful. The generosity and compassion of perfect strangers was the blessing that saved his childs life.. a few weeks ago he reached out and asked to do the same for Annabelle. Medical bills are collapsing our families walls and a promising opportunity for Annabelle is in the near future. I cannot wait to submit our application and begin this next journey, but we cannot do it alone. Please share Annabelle's story. Please share the website Justin and his family have started for Annabelle. But above all, please continue to pray for this amazing little girl.

Support Annabelle's Fight

http://www.gofundme.com/ouajzo