Cincinnati Intake

Patient intake is complete for Cincinnati Children's Hospital. A short phone interview yesterday finalized Annabelle's case. We highlighted the most significant aspects of Annabelle's health that need to be addressed, we clarified prior tests and procedures and why they were performed (EEG's / Brain MRI's / Bone Age Scans etc.) Finally - I was asked who we would like additionally part of Annabelle's team while we are there. I asked that Behavioral Medicine be involved; this was hard but a reality we need to discuss.

Annabelle is growing wise, aware and becoming more verbal about her condition. She asks questions that her daddy and I struggle to answer. When Annabelle was an infant, she simply screamed day in and day out and looked at us with helpless eyes - this resulted in an incredibly frustrated and depressed infant that resorted to banging her head onto hard floors and pulling her hair out. We have overcome those days, but we have evolved into where we are now: "I can't go to school because I have a tubey and that makes me sad." "I want to eat what sissy is eating, PLEASE mommy! Please! I promise it won't hurt me"."WHY?!.... why :("


AK has ridden this journey along side of us the entire time, but as a daddy - he struggles to see his daughter as 'sick'. Daddy's like to fix things, they want to make the pain stop and go away. Men and daddy's are 'fixers' - mommy's tend to nurture and take care of our sick child. AK and I have taken two different approaches to this life we were dealt raising Annabelle. We compliment each other very well and Annabelle never misses a hug and kiss from each of us when she needs it. But as this journey continues to unfold, with little answers for what the future looks like - AK and I need to be on the same page, the conversations in Cincinnati need to be heard by the both of us and with clarity. We struggle to recognize what each other and Annabelle needs from us at times. I want AK to be part of the Cincinnati trip for many reasons, mostly so he can learn and hear from the best medical doctors in the world about his daughters condition - I also need him as support for me while we face a tough road on this journey. We both need to hear all the information that will be given to us so we can keep ourselves accountable to her treatment plans. It's very, VERY difficult for one person alone to hear a doctor and retain everything. Behavioral Medicine will be part of our visit to Cincinnati. They will be there to support AK and I as we make this trip and they will also be there to help us begin to understand and answer Annabelle's frustrations and questions. We have quite a large team preparing to work with Belle.. behavioral medicine, I believe is going to be the icing on the cake for this visit. Whether we know it or not - we need them involved more than we can imagine.


Our final itinerary will be sent to us shortly, but tentatively the schedule appears to to involve Surgery Monday, Scans and procedures Tuesday along with Behavior Medicine Eval. Allergy / Immunology work-ups, consultations and EoE seminar that AK and I will participate in while the team of doctors round-table. Thursday will hopefully be the day to review clinical findings and develop a treatment plan based on our tests, pathology results, evaluations etc. It will be a very busy week.. I am hoping we do not have much more added to the scheduled.