It has been almost two years since we last saw Dr. Rekate, almost three years since Ezri’s last surgery with him, and as always it was such a “breath of fresh air.” He is without question a remarkable neurosurgeon, but what makes his patients love him so, is that he takes the necessary time with them and “truly” listens to them and goes out of his way to help when he knows it’s the right thing to do. I could go on and on, just as any of the families he’s treated could, and after three successful surgeries our family has had a number of interactions with him. The appointment Monday was bittersweet. Ezri has surpassed what was expected of her when she first came to BNI and Dr. Rekate for surgery three and a half years ago. She is in a Saturday morning Tae Kwon Do class with her sister, Kes, and more or less keeping a pace slightly behind her peers in school – in many ways doing fantastically for the hand she was dealt and I know Dr. Rekate loved seeing her doing well. She is also hormonally ‘better’ than prior to the surgeries in that we’ve been able to stop her Lupron for precocious puberty (since Sept 2011); something that according to Dr. Rekate, some of the more recent PP/HH patients having the staged surgeries have also been able to do. That being said we still see many dacrystic seizures and some staring episodes every day, and bad days are pretty darn bad for Ezri. In that sense, it would be nice if there was some ‘target’ of residual that might solve these issues, however there is not. There is an area surrounding Ezri’s right mammillary body that I am certain is the root of almost all of her seizure issues at the moment, and in fact, I had written an email to Dr. Rekate almost 2 years ago regarding it. However, it is in such a risky and undefined place that it was disregarded for a more obvious residual to operate on last May. Of course removal of the ‘obvious’ residual, did nothing to change the seizures. After our discussion on Monday, I think Dr. Rekate has the same hunch as us. We have now compiled quite a history of symptoms/events that all point to this right mammillary area, yet we can’t prove anything absolutely; and we can’t define what is HH and what is brain tissue despite some bulging and asymmetry. Ezri would likely have a loss of short term memory if she underwent surgery here without knowing exactly what structures are HH and what are normal brain tissue. Her memory is surprisingly good despite all that she’s been through, so more surgery at this time is far too risky. For now we sit and wait and hope for new discoveries and treatments that would help Ezri.
With regards to hopes, dreams, and expectations, I believe that they can play a huge role in what comes to be. When we first met with Dr. Rekate and Ezri was 13 months old, she was a developmentally normal, perfect and happy baby girl – it seemed unreal to us that she would deteriorate the way that untreated HH patients usually do. We asked if there were any ‘good’ outcomes for a child such as her with a giant HH and he said ‘no’. After her third surgery at 33 months old, which we had pushed hard to attain as she had declined so much, Dr. Rekate told us that he had never thought that a child such as Ezri might lead a “normal” life and that we had taught him that it was reasonable to strive for more than just a ‘better’ life. For us, ignorant of the real course of HH, it was just “normal” to want a “normal” life for your kid. Now, with the improved surgical techniques, many of the giant HH patients do very well – it is amazing how quickly this has improved in a few short years. We still want Ezri to drive a car and get married and enjoy all that life has to offer – all that any parent wants for a child. So, we let her ‘help’ drive the boat for practice (or golf cart at the beach – highly supervised of course!), participate in as many ‘typical’ activities as we can, and treat her as ‘normally’ as we can. We try to keep the thought that she may end up living with us forever tucked far in the back of our minds. Ezri wants to be a “mommy” more than anything and she would be an excellent one – if you all could only see the way she loves her 3 month old brother, the way she baby talks to him, taking care of him and keeping him happy – so those are our expectations which are definitely high, and we no question will love her just as much if they aren’t met. And for now, we will keep praying for a ‘miracle’ and some way to eliminate these blasted ‘sad seizures’ from her life.