Home Sweet Home

After 113 days, 45 days at CHOP and 68 days at Penn State Hershey Rehab, Gavin was discharged home. We knew going into this journey that it would be long and trying, but I’m not sure we could have ever been prepared for what we experienced.

While we were at CHOP, a member of the care team told me to rest up because it was going to get harder. I thought he was nuts, but I trusted his advice. He was right. Our days at the rehab hospital were exhausting (and I wasn’t the one doing all the work!) When we first arrived, 11 days post op, Gavin could barely sit unassisted. The therapists asked us what our goals were for Gavin. We promptly answered, “That he walks out of here!” Their disbelief was written all over their faces. We may have shocked them with coming in so hot but we followed that with what every parent wants for their child, every opportunity to be as successful as possible.

As an aside, when Greg is asked about long-term goals for Gavin, his normal response is “if he chooses the event, Gavin will be able to run the 800 meter finals at districts.” It is normally met with stunned silence or looks of “you can’t be serious”, but it conveys the message: our goal is for Gavin to have what “normal” children have. We are hesitant to set goals or have expectations that can become ceilings for what is possible.

Anyway, it felt like we were living the movie Groundhog Day. We did the exact same thing at nearly the exact same time every day. Gavin performed four 45 minute sessions of physical, occupational, and/or speech therapy at a minimum of five days per week. His first session was typically at 0730, which meant that our day started long before that. We asked for and received homework exercises as well. We were doing the volume and strength/endurance building. This allowed his therapists to focus on form and more complex movements, but also made for long days. All in, Gavin was doing roughly six hours of therapy a everyday. When you factor in meal times (his neuromuscular condition makes him a very slow eater), a nap, and general care, the days often turned into late nights.

The goals that were set early on were crushed within two weeks. The therapy team approached us to tell us that they wanted to keep Gavin for longer than initially discussed because he was doing so well. They decided to keep adjusting their goals in order to continue challenging our Little Rockstar!

We had our first post op appointment with the surgeons, Dr. Cahill & Dr. Kennedy, on August 28th. I was nervous but excited to share with them how well Gavin was doing. I also knew that Gavin would be x-rayed to make sure all the hardware was still exactly where it was originally placed. With a curvature as severe as Gavin’s was, there is a high risk that the body reverts back to the curvature regardless of the hardware.

Dr. Cahill opened the x-ray and said, “this is the moment of truth” with a big sigh. He quickly turned to me and said, “This is wonderful. The x-ray looks perfect. I couldn’t be happier with what I’m seeing.” Then he asked about Gavin. I started explaining that just the day before Gavin had walked with his walker over 150 feet three times in one therapy session. He was sitting unassisted on the floor, in a chair, on a bench. He was standing at tables to play. He was using two hands at the same time to play with toys. He was loving his new body and it’s new abilities. Dr. Cahill’s eyes filled with tears as his mouth dropped open. He was speechless. Within six weeks, Gavin was performing not only better, but had made significant gains on the function he had lost prior to surgery. As I continued to explain what my son was now capable of, it hit me. It was as if I needed to actually say the words to truly comprehend how incredible it was. As I was speaking, my mind wandered back to that day in July when this very same physician warned me of the high risks the surgery had, including robbing Gavin of the limited function he had. At this point, I was overwhelmed with emotion, as was everyone in the room. Dr. Kennedy finally said, “seeing Gavin today has just made my day, my week, my month!” Dr. Cahill said, “I’m definitely celebrating this weekend!” They were so proud of him. Of us. All of us for taking a huge chance on a child that deserves every opportunity to succeed.

Greg and I were still a little hesitant. Going through such an arduous and exhausting experience has made us a little weary and occasionally jaded. We were waiting for the other shoe to drop. Breaking a pregnant pause, Greg said, “ok, so what’s the bad news?” Both docs were puzzled, but acknowledged our reluctance to celebrate too early. Dr. Kennedy sat down next to me and said with such sincerity, “Sometimes you just get good news. Which makes today a really good day.”

We left that appointment with orders to keep doing exactly what we were doing. So we returned to the rehab hospital to put in more work. Goals were adjusted often because Gavin just doesn’t know how to quit. After another five and a half weeks, we were finally discharged home on October 4th. At that point Gavin was walking with his walker over 500 feet a few times per day, riding a bike, kicking soccer balls, and enjoying his new recumbent tricycle.

And for your viewing pleasure, check out our Instagram stories for a video of Gavin WALKING out of the hospital on discharge day!

During the month that we have been home, we have been busy adjusting to our new normal. Gavin started back at preschool twice per week. He loves preschool! He’s so smart and loves to interact with other kiddos his age. He attends outpatient therapy the other three days a week. It did not take him long to build another fan club of therapists that are passionate about pushing him and watching him succeed. Weekends are filled with time just being a toddler: building Legos, playing with the dogs, and spending time outside. He continues to make great progress and become more confident in his new body.

Gavin also got to see Dr. Cahill and Dr. Kennedy for a second follow up appointment this last week. Again, Gavin was x-rayed and the results were exactly what we wanted to see. Again, they were beyond thrilled to hear of Gavin’s progress. As of right now, the plan is to remove the current halo on Wednesday, November 27th. It will be replaced with a smaller, less bulky, “pinless” halo. We are excited to see what the next part of this journey will hold for our little guy.

As we settle into our new normal, there is a renewed sense of gratitude. We are incredibly thankful for the physicians, nurses, nurse practitioners, and therapists that gave (and continue to give) Gavin a chance to prove what he can do.