Jackson turned 10 at the beginning of this month! Every birthday we like to reflect on the past twelve months and here’s what happened this birth year.

This time last year we were under strict lockdown. We celebrated Jackson’s birthday outside and everyone had to mask up.

On Halloween, my mom noticed Jackson’s hands looked a little puffy. We made note of her comment but didn’t do anything else about it.

We celebrated the holidays alone, doing our best to keep Covid at bay.

In January, Jackson’s health had declined to the point where we needed to take action. He stopped smiling, needed to be monitored on the pulse ox almost 24/7 and his hands and feet were noticeably puffy. This led to many, many doctor’s appointments from January through March. We had hoped to avoid the doctor and hospital during the winter Covid explosion but we managed to do anything but. We went to the pediatrician and Children’s Hospital weekly. Jackson had countless labs drawn, we asked almost all of his specialists if they could figure out why he was “blah” and we added cardiology to our list of doctors. No one could find a specific reason for his decline, which was very frustrating for us!

To try to combat his “blahness” I started making his food again instead of giving him formula and we got him in the hot tub as much as his health would permit to get his body moving. But nothing seemed to help.

All of these visits culminated in a one week hospital stay at the beginning of March due to very high calcium levels. During this stay the medical professionals discovered his bones were leaking calcium. Jackson’s bones are weak because he doesn’t weight bear, which led to his bones leaking calcium. As a result, Jackson received an IV infusion of a drug to improve his bone health, he now sees an endocrinologist who specializes in brittle bones in non-weight bearing kids (Who knew a doctor could become this specialized???) and he receives infusions every four months to make his bones stronger.

His health improved considerably after the first infusion. We were able to take him off the pulse ox during the day and he was generally better.

In the late spring and summer, we felt safe enough from Covid to resume in person therapy visits. Jackson went to in person PT, speech and aqua therapy and he enjoyed all of it.

We started to let family members back in the house as they were vaccinated. We took a long weekend getaway to Lake Cumberland, Jackson got to enjoy his first boat ride, and we were able to celebrate my sister-in-law’s wedding. It was so awesome to get a little return to normal.

Jackson had surgery in July to remove the hardware in his hips and legs from a major surgery two and a half years ago. The doctor took a lot of stuff out of his little body!

Jackson’s wounds started pooling blood a week after surgery, which led to a few visits to the wound clinic and another visit to cardiology. But, his incisions eventually healed.

August was a depressing month. The delta variant emerged, our household again went into lockdown mode and Josh and I had to cancel a much needed weekend getaway. Luca started in person school and Jackson began another year of virtual learning.

In the weeks leading up to his birthday Jackson stopped coughing as much and required more oxygen periodically throughout the day. Josh and I became very concerned about his respiratory health.

We celebrated Jackson’s birthday with my husband’s immediate family at a local park, which was fortuitous for Jackson. During this celebration and because we were outside in the sunlight, Josh and I noticed Jackson’s tongue was completely white and crusty and his gums were red. We immediately called the pediatrician, who prescribed medicine to treat thrush. What we thought was an unavoidable decline in health turned out to be an easily treatable mouth illness. Since we started the thrush medicine he’s coughing on his own again and hasn’t needed any supplemental oxygen. It’s stressful having a child who can’t talk and tell us what hurts.

This year was more eventful than we would have liked but it seems like all the years are this way. Nonetheless, even though it’s not my birthday and all the years have an unavoidable amount of stress I still make the same wish: let the upcoming 12 months be healthy and happy.

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