Sunday, April 26, 2015

Spring Awakening

It's been about 6 weeks since we found out that Ezra responded to vaccination and with that news, everything changed. It has been a whirlwind of a month with a lot of big changes both medically and socially. We have been slowly testing the waters of "normal" life one little toe at a time, which has been wonderful and scary at the same time. 

On the medical front, Ezra's counts are great and he is now off steroids for the first time in over a year and a half!  Even better - he is now off all medications, aside from vitamins and supplements for the first time since he was 4 months old! This includes the prophylactic antibiotics to prevent the type of pneumonia that attacks Hyper IgM patients, which Ezra has been on in one form or another also since he was 4 months old. Again, wonderful and scary at the same time. 

We are also continuing to vaccinate him, much to Ezra's chagrin. No one likes shots, but we are finding that Ezra is having an especially difficult time, likely from all that he has been through in the past. His doctor wants to give him a little break because she thinks he's getting too traumatized. As much as we want him to be as protected as possible as quickly as possible, she is correct and we will take the vaccination process slowly. Or maybe it's Ezra's demands to his doctor that she "figure out how to put the vaccine through his port." He isn't buying her reasons for why science takes a long time ;)

On the social front, Ezra is making great strides. He has been enjoying having play dates, learning what it means to play with another child, and reuniting with family and friends. We've also been having a blast going to some public places that were previously off limits. Even the most simple outing is a treat to us. 

We are still taking precautions and not knowingly exposing Ezra to anyone who is sick. We clean his hands regularly while out and Ezra knows not to touch his face when his hands aren't clean. Ezra is still under a fever alert where we must take him to Sloan at any hour of the day or night if he shows signs of a fever for tests and IV antibiotics, which will be traumatic for all of us. So we are proceeding with caution. 

Our big project is to see if we can get Ezra into kindergarten on a limited basis before the school year is over. One of Ezra's home schooling teachers is a kindergarten teacher with a class at one of schools in our district. The plan, if all goes well, is for Ezra to attend her afternoon kindergarten class for a short amount of time a few days a week and see how he does. We have started bringing him to her classroom after school without any other children a couple of days a week for his home schooling instruction, and he is loving being in the classroom (and yes, he had to wear a tie for his first day!). Being with other children is going to pose more challenges, but we are working with a fantastic team and are confident that we will figure it out together. 

This new way of life still feels surreal. After 6 years of living in differing levels of isolation, our days now feel so full. Ezra's strength and energy have also been improving. Amazing what the right motivation can do. Whenever we see statistics about survival following transplant, and in particular when there are auto-antibody complications like Ezra faced, we feel so blessed and lucky. There was never anything but uncertainty that Ezra would survive. Now we spend each day grateful that he is here; he is strong; and he is healthy. A spring awakening like no other. 





6 comments:

  1. Such great news! It should continue this way!

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  2. I am so happy for all of you. You are so articulate when you write a post I feel like you are talking to me.
    I hope Ezra enjoys going to school and making new friends. He truly is a blessing in many ways. Please give my best to Evan , my former 2nd grader.

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  3. Words cannot express how this makes me feel. I knew in my heart we were going to get here. Ezra is going to change the world!!

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  4. Incredible, miraculous. Such a joy to be reading this.

    David
    Jerusalem

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  5. A cool tie, Ezra! So delighted that life is taking on a normality for you all and, with the amazing boy Ezra has shown himself to be, am sure he will take to school as a duck to water. All we wish for our children is good health and happiness and that is what I wish for Ezra. From his photo he is growing into a beautiful boy, with a sense of sartorial elegance!!

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