Month: July 2015

A Three Year Journey


Idan's New Ride!

Idan’s New Ride!

 Today Idan turns three, which is a big milestone in every toddler’s life, and Idan is no exception. We are thankful that this past year Idan has kept healthy, and, despite the loss of his graft, we are happy with how well he has been doing and dealing with Hyper IgM. As mentioned many times, our journey to a cure is still at its beginning, but we have learned to enjoy and cherish the small moments of joy along the way, and the small wins that Idan has earned.
This summer we have decided to be more adventurous. With flu season over, and many less cold viruses around we have taken more risks and found ways to allow Idan to get out more and explore. The truth is that most of this is because Idan has turned out to be an extremely conscientious and well behaved kid who has learned to navigate the outside like a germ-busting pro. There are not many kids under three who have learned not to touch their face, not to touch surfaces and to ask for Purel and antibacterial wipes after a fall before asking for the needed healing kiss. You can see the clip below of Idan’s thought out approach to sitting on a stone in Central Park, a method that would put even the best of OCD germaphobes to shame.

This has allowed us to enjoy the summer more and even journey out of state for one of the more memorable experiences Idan has had so far. In late June, we travelled down to New Orleans to attend our second Immune Deficiency Foundation National Conference. We were lucky enough to have Idan’s aunt, uncle and cousin join us to entertain Idan during the long days Amanda and I spent attending sessions and meeting with experts. Idan is such a good traveler he was even excited to receive his weekly infusions of IgG’s in a new setting while playing with the swag he got from the pharmaceutical companies that make immunoglobulin. After three days of swag collecting with his uncle and waking up to his cousin’s knocks on our door, Idan was ready to move into the Hyatt and did not want to return to New York. He has been asking to go back to New Orleans ever since.

For us this conference was a wealth of information and filled with important meetings with some of the biggest names in Immunology. As readers of this blog might recall, it was at this conference two years ago in Baltimore that we met with Dr. Torgerson from Seattle and learned for the first time about their transplant protocols and started entertaining the idea of traveling out there for transplant. This year we returned to the conference and had a chance to sit down with many of the experts we had consulted with two years ago and update them on Idan, and hear about the latest data and studies (soon-to-be-published) on Hyper IgM. No longer are Amanda and I newbies to the immune deficiency world seeking out any information we can find. This time, we returned as patient experts seeking to influence and inspire these experts to bring more focus to research on Hyper IgM and our patient population. IMG_6063

This weekend we were able to celebrate with family and friends in Central Park and give Idan a relatively normal birthday party for a three year old. Idan is of course not a normal three year old. No, he is the size and weight of a 4 year old with the wit and sense of humor of much older kid. He speaks in full sentences and wants to know why and how everything works. He might still be behind with outdoor playing skills but he can name more shapes than I can, and build a pretty impressive magna tiles castle. He knows that he had a transplant in Seattle, and when watching clips of our time there, he asks to go back, but this time “as a kid.” We tell him we will, but he of course cannot know everything that that really means yet. Until that day comes, we will continues to count our blessings, and plan for the next adventure.

Three’s A Charm

Three’s a Charm.
Something my mother always says – “good things happen in three’s.” Let’s hope that good things happen for three year olds too. Idan is turning three on Monday. It’s hard to believe only three years have passed since he came into our lives, and yet – as I believe it to be the case for most parents – the moment is seared into my memory like none other.

First, let me dispel you of the notion that you “forget” labor pains – you don’t. They’re real and they are relentless. But after spending nearly ten months carrying a precious life inside you, the pain is a small sacrifice to hold that bundle in your arms. I remember looking over at Akiva just a few seconds before Idan made his debut, and seeing his face slowly light up and his eyes widen as he saw Idan’s head. Within moments, my whale of a belly was deflated, and the weight was transferred into my arms. Eight pounds, five ounces. All of them, suddenly in my arms. His beautiful face, two eyes, ten fingers, ten toes, little chubby arms, and a tiny voice crying out, demanding to be heard. He felt heavier than I expected. Solid. Real.

I remember staring into his tiny face, watching his eyes open and close, feeling tiny breaths on my shoulder. He was small, but powerful. Within 48 hours of being born, he was already playful. Akiva and I fell deeply in love. There is nothing quite like the love you have for your child.  

Idan is not your average three year old. He’s had more “life experiences” than most people have in a lifetime. He’s known pain and fear intimately. Yet he’s resilient. He’s fearless, and he’s funny. He’s cute and silly and playful and loving and thoughtful and inquisitive.   

 This year is a big year, again. This year, Idan will likely once again be asked to trust us, to allow us to lead the way. He’s no longer a baby, but he’s still the same child that was thrust into my arms three years ago. Solid. Real.  

Happy Birthday Idani. Just like the labor pains, we won’t be able to forget the painful memories, but we are mindful of the important role they have played in shaping you into the incredible child you are today. You – three-year old beautiful special you – have arrived, and, with your tiny voice crying out (well, mostly singing these days), you still demand to be heard.  

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