I have gotten so many messages since I posted my last entry asking me what the sign I got from my grandmother was. Patience my friends, patience! Here it is!

On April 22nd, my grandmothers birthday, I was sitting in the family room playing with Jack while CJ was eating his lunch. He must have gotten up to throw something away because he ended up near the back sliding glass door. As he was walking by he yelled for me to get up and come look at the cardinal in the back yard. This is a common occurrence due to the fact that CJ is a bird fanatic. My mom has taught him about any bird he might encounter at the house, and he happily points them out every time he sees them. They even made a bird book together, and he loves to share characteristics of each bird when he sees it. I love seeing him so excited about things he is interested in.

As we often do, Jack and I walked over to the door to bird watch with CJ only I couldn’t see the cardinal. He kept pointing and telling me where to look but I still wasn’t seeing it. Just as I was about to give up, the cardinal flew in front of the screen door three times and off he went. He was a big boy and so beautiful. I was glad I got to see him.

Within five minutes of seeing the cardinal, my phone rang. It was Nurse Jane calling from our insurance company, UnitedHealthcare. I immediately thought she was calling because a claim wasn’t approved or she wanted to tell me about the nurses they had on call 24/7 to answer any medical questions I might have. She didn’t mention either of those things though. She called to tell me that based on Ella’s medical history, and lack of a diagnosis, she had qualified for submission into a program through the insurance company called Diagnostic Odyssey.

The program is extensive so I will give you the gist for now. First, Nurse Jane submits a referral to Boston Children’s Hospital on Ella’s behalf, outlining her medical history and any concerns that we may have. BCH then reviews the submission, asking follow up questions as needed. Once they have reviewed the paperwork they make a decision on whether or not she is a good candidate for the program. All Jane needed was my permission to submit the referral, and a breakdown of Ella’s medical history, to get the ball rolling. Of course, I jumped all over that. She told me within two weeks we would know if she was accepted.

Jane and I spoke for over an hour regarding the history and background of Ella’s care. She was the sweetest, most kind hearted woman and never once made me feel like I was anything but a rockstar mom. Before we ended the call, she promised to get back to me as soon as she found out if Ella was accepted. The wait seemed like forever.

Steve and I had applied to a similar program at the Undiagnosed Disease Network when Ella was younger, and got denied. They told us we had done everything they would have, and at the time could offer no other recommendations for care. I was devastated. I took solace in the fact that we were doing all the things we should be doing, but that didn’t bring us any closer to answers. I was so afraid Boston would say the same.

Less than two weeks later Jane called me back with the news that Ella was accepted into the program. My heart nearly jumped out of my chest. Jane then explained what would happen next. First, UHC would take care of collecting all of Ella’s medical records and send them to BCH. Once they got the records they would review them and decide what specialists it would be best to see. Already, based on what I had shared with Jane, genetics and neurologist were on the list of doctors to see. The rest would be decided before we went.

As far as when we would go, right now that depends on how quickly the records are obtained. Jane said under normal circumstances it takes about three weeks. Under covid circumstances, no one knows. She then explained that it would be a week long visit and would mostly likely be intensive. The first day we would meet with a diagnostic doctor and review everything. The next few days we would see specialists who will examine Ella, gather information, and run any tests they feel are important. On the final day we meet with the diagnostic doctor again to review results and put a plan into action.

The whole program and process sound amazing, but I refuse to get my hopes up just yet. Five years and we have yet to get any definitive answers on Ella. I am going in with an open mind, and taking some advice I have recently been given. Giving what Ella has a name won’t drastically change how we handle everyday life with her. It may provide us with some clarity, and down the road bring progress, but nothing will be changing overnight.

That being said, we are super grateful for the for the opportunity. I will keep everyone posted on when we will be going.

As for Miss Ella boo, she had one of her best days since starting on the medicine. We have friends who are building a lake house and we got the chance to spend the day with them. She was laughing and engaged the entire day. I think she truly loved seeing familiar, non mom and dad, faces. Only as bedtime approached did she let it be known that she was done. She passed out the second we got home. Today was good for the soul and a much needed change of pace for everyone in the family.

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