Grant and Sebastian
Updated May 2020
For most of us COVID-19 has brought the world into our shoes for the first time. The world has started to understand what cold and flu season is like for families who have a child with Propionic Acidemia. For once we weren’t the only ones that were “paranoid” about our children getting ill and having to be hospitalized.
In some ways this is comforting, but in others it totally brought me to my knees. We quickly not only became responsible for our child’s medical wellbeing, but also for their social emotional and academic well being. While most of us have had to provide support to our children to ensure that they are progressing, I think few of us have had to take on the role of teacher, therapist, mom, nurse and also work a full time job all day everyday.
By occupation I am a teacher, but I’m not a special education teacher or a physical therapist, occupational therapist and speech teacher. Even though we fight for our children every day, I think this has been a difficult journey. It’s set a new normal not only for us, but for the world as a whole. It’s brought a new fear into our lives, with many unknowns. Now even the typical hospital stay has become unnavigated waters, with new protocols put into place daily, sometimes hourly. How do we fit all of it into 24 hours? For many of us the extended support system we have built has been cut, our home health nurses, therapists, teachers etc. have been removed, except for Zoom, and who are we kidding Zoom isn’t the same as people being in our homes and helping us, giving us an hour here or there of adult interaction.
Yes, these times are rough, but I know brighter days are ahead, or at least warmer ones. Which brings about a whole new round of changes. During the summer the park and pool are our go to places to keep the boys entertained. Those options are gone for this summer. What are we to do? We’ve already been on an extended period of summer-like routine. How are we going to keep these kids cool and entertained for another 3 months? For our family the answer was to redo, our luckily small, backyard into an entertainment area for the boys. One where they could go and be outside, but not have to be exposed to germs. The backyard has been mulched, the blow up island has been inflated and the shade has been brought in.
While some of this virus has familiarity to it because we deal with PA, much of it brings about new questions and possible issues. And that can be scary, we are fortunate to have the PA community to reach out to. Keep reaching out, share your joys, frustrations, fears, with us. Ask for help when you need it and above all know for once, we aren’t the only one living in a sea of unknowns. We are all in this together. Our family hopes you have a wonderful adventure of some sort this summer.
Amber and John,
Grant and Sebastian, Age 7
Our story with PA started out the same as many of yours. Our sons were born looking perfectly healthy, besides being born six weeks early and being twins. Everyone that saw them thought they looked wonderful and would go home from the NICU rather quickly. However, that all changed on the sixth day of their life. I got a call from the doctor in the NICU that Grant was struggling and had to be put on a ventilator, but they thought it was just a virus of some sort. By the time I got to the hospital he was completely comatose and there were swarms of people around him. They were trying to explain exactly what they thought had happened, but all I could understand at the time was that he was very sick and they didn’t know what to do. They were running a lot of labs on him and his twin brother Sebastian to try and see if both boys had a metabolic issue of some sort. We were quickly transferred to another hospital that had dealt with these types of conditions before. While I can remember the whole day perfectly now, in the moment everything was a blur and I seemed to be just a spectator as they hooked both boys up to an abundant amount of machines that seemed so humongous in comparison to their little 4lb bodies. They were too small for traditional dialysis, so they attempted to come up with a plan. Fortunately there was actually a visiting geneticist who was interviewing for a position at the hospital that day, who mentioned he had heard of combining ECMO and dialysis to help patients who were very small. This is what was decided as the best course of treatment for our sons. I will never forget standing over my son as they hooked up IV’s and poked and prodded him, all without him making a single, solitary sound. The ECMO and dialysis combination worked, even better than the doctors had anticipated and it seemed that both boys were on their way from catabolic to anabolic. Over the course of the next few weeks, we learned all about PA and the life that would now be our new normal. It was quite the operation at our house to get them fed around the clock, once they came home, thankfully we had and continue to have amazing support from family. The boys have had many hospitalizations since they have come home and have definitely given me lots of new gray hairs, but they have come so far. While our normal is being hospitalized with one or both of them at least once a month, they continue to grow and show us just how determined they are. They both started preschool this year and are riding the bus everyday to school. Anyone they come into contact with quickly becomes a new friend. It is so amazing to see how positively they affect the people that they come into contact with. It’s as if their personalities and happiness are contagious.
Mom of Grant & Sebastian
3 year old PA Superheroes