Wednesday, December 7, 2011

Going With My Gut...

Ella and Jason just after she was born.
Love at first sight!
Since the day Ella was born, Jason and I have vowed to give her everything she needs to have the best life. It was actually a promise we made to each other long before we had children. I think we have done pretty well so far...especially given the many issues we have dealt with over the past few years. Ella is growing and thriving. It is a wonderful thing to experience. It's not enough for us though. I have had this gut feeling for a while now (call it mother's instinct, I guess). I feel like there is still a missing piece of the puzzle or something more that we could be doing for Ella to make sure she reaches her full potential. She sees her doctors regularly and we seem to have her medications sorted out. It bothers me that I have to feed her five different doses of drugs every day though. I constantly wonder if we are doing the right thing. The specialists we see here in Albany are good, but they are not the best. I am not always confident they can handle the complexity of Ella's situation. When it comes to your child and medical care, confidence is very important.

 We want a second opinion and that is exactly what we are going to get! The process is underway now (insurance approvals, referral letters, etc) to get Ella into Boston's Children's hospital. I have done some research and found a specialist at children's. Dr. Joel Hirschhorn is a pediatric endocrinologist specializing in genetics. He works with a team of doctors in Children's endocrinology department which treats children with some of the rarest conditions. It seems like it would be a good fit considering Ella's genetic diagnosis and her hypopituitarism. Dr. Pelnik, our phenomenal pediatrician supports us 100% We have had many conversations over the past year about pursuing this opportunity. I had a long conversation with her yesterday and she assured me that this is the BEST thing that we could do for Ella. While she knows the doctors here in Albany are very qualified, they do not have the experience or resources that the doctors in Boston have.

Hopefully we will have all the necessary paperwork and appointments set up within the next week. I am anxious and nervous about the entire process. It opens us up to another round of difficult visits, but Ella will have the best doctors following her. I know in my heart we are making the right decision!

No comments:

Post a Comment