Withstanding with Courage

These last couple of days have been a bit of a blur. On Monday, Gavin was seen by one of the orthopedic doctors. I expressed to him that we felt as if Gavin was quickly losing functionality in his legs, specifically his left leg. At one point, I stopped and said, “I’m sorry. I’m not supposed to be the one saying why these things are happening, that’s your job! My job is to tell you what I’m seeing.” He laughed and said, “Yes, you’re right. And now it’s time for me to do my job.” He went on to explain that he needed to call the other orthopedic (the one that would be performing the spinal surgery) immediately.

On Thursday of last week I had sent an email to the other orthopedic also explaining the loss of function that we were witnessing. I was proactively scheduling more follow ups and the sedated CT that is necessary before the surgery. After the docs had a pow wow, we were told that we needed to see the orthopedic surgeon this week.

Yesterday, we got a phone call from the orthopedic surgery team confirming the appointment set for Friday. He went on to explain that due to the new findings, they feel as if Gavin’s surgery needs to be urgently moved up.

Gavin is scheduled for the first of two surgeries on Thursday, June 13th. The first surgery is for decompression of the spine and halo gravity traction. They will be placing halo traction on Gavin that will remain in place for the next 4 weeks. He will be inpatient during those 4 weeks as his spine is elongated and his body stretches to accommodate. It is also during this time that a CT will be performed and a “Firefly” will be created. The Firefly is a spinal navigational guide. The guide assists the doctors with pre-surgery planning, increasing accuracy and execution of the spinal fusion surgery.

The second surgery will be on Thursday, July 11th. This surgery is the spinal fusion. They will use the Firefly to stabilize and fuse Gavin’s vertebrae from C2 to T10 (base of skull to mid back). He will remain in the hospital for up to another 2 weeks, bringing the grand total to 6 weeks inpatient.

Like I said, this has been a blur. We are working on nailing down the specifics of what the next 6 weeks looks like for us. Greg will be splitting time between Harrisburg and Philadelphia. I will be staying at the hospital with Gavin. Our gracious mothers and fathers have volunteered to be our support crew. As our new home base, we will be renting an apartment only a few blocks from the hospital. As we know more details, we will try to keep everyone updated.

Many of you have asked “how best can we support you?”  So we have put together a list of ways you can help. 

• Gavin loves to make and send cards. He uses markers, crayons, and stickers to decorate them… each one is very unique to say the least. Please send him a card with your return address on it. He will make you a card and send it back! This will be a great activity that he already loves to keep him distracted. 
• Gavin really enjoys reading books. Send him a book! Please note that every book that is sent to Gavin will be donated to the hospital when our stay is over. 
• Like many boys his age, he loves playing cars, trucks, and trains. Send him a small toy! All toys will also be donated to the hospital when our stay is over. 
• He has started to enjoy watching movies. We have been introducing him to many of the Disney movies. His current favs are Toy Story, Cars, and Finding Nemo. Send him an Apple gift card and we will download a new movie for him. 
• Our home is over 2 hours from CHOP. So we are renting an apartment just blocks from the hospital for our new home base for the next 45 days. If you live close by, feel free to bring a meal to the apartment! However, we are vegetarians. No meat please. 

While the next several weeks will be trying, we are grateful there is a surgical option and we know his team of physicians are second to none. We appreciate the continued support and look forward to sharing updates demonstrating Gavin’s courage.