Take a minute and close your eyes and smile.
That was my happy place yesterday too.
When I opened my eyes, Dr. Putnam wasn't smiling. He didn't seem the least bit content with the news he just shared with us.
"Annabelle isn't ok, mom and dad. We're just really lucky this side of the disease has settled down - now we need to figure out what is causing all of this."
I wasn't following .. I wanted so badly to be in a happy place for Annabelle and throw the party I have been planning in my head all week. I wanted to giggle and jump up and down and the doctor is sitting directly in front of me with a half grin as he smiles at my daughters but so much on the tip of his tongue that he just didn't know how to say. It was a hard conversation .... A DEEP conversation, but here's the big picture.
Annabelle is still in pain. Stomach pain, pains in her throat when eating, leg pain, hip and joint pain.
Annabelle still cannot tolerate a diet like a normal child. She cannot eat enough on her own to sustain. She is still dependent on the EleCare and tube feelings.
Annabelle tires so easily. She falls asleep at school, sitting in the car, she tires after short amounts of silly play. She crashes. Hard. And usually with pain.
Dr. Putnam explained how critical it is to take this time, while Annabelle looks well from an EoE standpoint, to fight like hell to figure out what is happening to the rest of her body. To find her GLOBAL DIAGNOSIS! (Yes, I asked - this means she cannot have any new foods :( our team won't allow her to trial another food or change anything at all in her diet until we make headway with her main diagnosis. This will also give us time to keep her from being subjected to anesthesia so often. The affects of constantly being put under are outstanding and stats we don't want to be part of. If I can avoid having to hand my baby over to another anesthesiologist for a while, bring it on!)
Dr. Putnam sees children just like Annabelle often. He described her to a perfect T, so painfully accurate that I had to stop him in mid sentence and just say "thank you", with tears in my eyes "thank you for believing in us and fighting for Annabelle. You understand her better than I do, I can't tell you how much of a RELIEF that is. Thank you!"
He explained how most children with EoE, live in chronic pain that doctors can't figure out, cannot exercise because of the pain and they crash so quickly and easily, most off all - all children with EoE do NOT only have EoE, they are a puzzle with so many facets of problems that treating anything is a long, frustrating, expensive road. However, doing so and when you do get those answers, their quality of life is exponentially increased. And quality of life is our family's number 1 priority for Annabelle.
He gave us two options:
1) return to see Dr. Burrows in Genetics to continue Mitochondrial Testing. This means more money and likely a longer time before we get results back, but if we are right and we look into the right places during testing, we may have our big answer. In the meantime, we won't have more answers for her pain and cannot improve her quality of life, we will just be waiting for month / years for a test result to come back which may or may not give insight to her diagnosis.
2) consult with neuro muscular. Hopefully with that team, they can determine the cause of her pain and begin to control it. They can explore more avenues of Annabelle and work with others to really narrow down on what we need to be exploring and where the issues truly lie. We would take that information back to Dr. Burrows in Genetics and do Exome Testing. Also very expensive and not completely trustworthy but with children like Annabelle, they often have success with this route.
Meanwhile, regardless what we do, she needs to be seen in the Sleep Clinic for a sleep study. Annabelle has never slept a full night in her life. She was awake last night for example, 4 times between the hours 11p and 630am. Talk about living in the newborn stage for over 4 years!! At her age, she NEEDS continuos sleep and not disrupted, broken sleep in order to healthy and rested, have energy and learn. The poor child has never had healthy sleep in her life. It's about time we work on that.
We choose option #2. We discussed the pros and cons of each, but truly, what we want for Annabelle is to be happy, comfortable and feel as normal as she possibly can. The truth in fighting for these answers are that at the end of our road we may get a diagnosis that have no answers, no direction on where to go, no promise for a future, no medication to fix things. We may only get a name with blank pages behind it. We may never get a name! So many of children like Annabelle never get a diagnosis. They're recognized as just that, undiagnosed. Knowing the reality that we may never get a world of help for Belle, the best we can hope for from our energy wasting, money spent, hours / days / weeks / months in the hospital, tests, procedures, scans, assessments is that we can improve her quality of life with every move. So that in the end, no matter how this road ends, we will win. Annabelle will still win.
Dr. Putnam is putting in the referral to both the sleep clinic and neuromuscular. We met with behavioral medicine and clinical psychology with a neurologist today. We will continue to meet with all the specialist we need to work at narrowing in the scope of Annabelle so that one day, we can take all the information needed to do a comprehensive, well informed Exome Test.
The day was not bad. We feel great that we left the hospital yesterday with both good news and a great game plan. I still have no told Annabelle that she isn't getting any new foods, nor do I know if she will anytime in the near or distant future. She hasn't asked but she also hasn't gotten a new food in almost a year so I don't think she actually expected it, sadly. Dr. Putnam is hands down, the best doctor I've ever met. He is such an advocate for these kids that have had doors slammed in their face their entire lives. He fights for them while wearing the most gentle smile and so soft spoken. He gave Annabelle the biggest hug before we left the hospital and she fell in love with him just as much as we have.
We left the hospital in time to visit the Cincinnati Zoo. The girls had a great time. Annabelle made it about 45m before giving up on walking and needing to be held for the rest of the day, but overall they had a blast seeing the animals :)
After the zoo, they pleaded to go back to the aquarium. Being it was our last day to do anything and we really hadn't gotten our money's worth the day before, we took them back to use our tickets for another day. Once we parked, Annabelle asked if she can stay in the car in the parking deck because she wanted to rest. Mady and daddy went to the aquarium and Belle and I snuggled in the car until dinner time.
After dinner. We had the best surprise in the world for Belle. Cincinnati Bikers for Christ made a special trip to visit Annabelle at our hotel. When we pulled up, she immediately recognized motorcycles and perked up. As soon as we walked inside, i spotted strangers in leather vests, Annabelle spotted her motorcycle friends :) she greeted them with the biggest smile and "HI FRIENDS!!" It was precious, and a beautiful testament to Belle and her sweet demeanor to how much she loves everyone and doesn't let her struggles bring her down. She was too weak to walk much so she was being held, it didn't slow her down or stop her from giving her new friends hugs though.
They stayed for about an hour as we all talked, they built us up as we shared our story and thanked them for visiting. Of course I cried, I do a lot of that lately. I think the strong wall I built years ago is falling. One of the guys asked "why her name, and do you feel like she's owned it now?"
Annabelle Grace
Anna was my great grandmother that passed away when I found out I was pregnant with Annabelle but we hadn't told anyone yet.
When she was born, I didn't have a middle name picked out.. I had several that we were considering but nothing concrete. It wasn't until the evening Annabelle was born when I went to really "meet" her in the NICU that I stared at this beautiful little baby that scared the crap out of me. She had tubes and wires, she didn't have black hair like the rest of us, she was two months early and unplanned. She wasn't what I had pictured at all, but somewhere in the midst of the chaos and fears, joy and tears, I looked at her tiny toes and fair skin and said "grace, you'll bring the grace to our family that we didn't plan, can't predict, or ever know we needed". Annabelle has held true to that name ever since. My strong, fearless grandmother lives thru her with grace and poise, even thru the darkest days. Annabelle Grace was and still is exactly what our family needed 4yrs ago and today.
Just thinking about how much Annabelle has changed and everything she's given our family, bring tears falling to the floor. Bikers for Christ were so genuine and compassionate to us. They prayed for Annabelle and our entire family. They invited us to their home next time we are in town. They were just the touch of home we needed from states away. We are so blessed, SO very blessed beyond measure to be surrounded with the most humbling and loving people out there. We could never thank those that support Annabelle and our families journey thru prayers and help, enough. Thank you, everyone that reads, everyone that prays, everyone that shares her story so we have more praying for us. Thank you!
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