I can’t believe how long it’s been since I’ve written about Drew. I just checked my last post and I’ve been quiet since June 2018. It’s not that I’ve been so preoccupied with endless challenges of special needs parenting, but it’s not been uneventful either. I’ll call it a mix between lack of motivation and creativity.
Since June 2018, Drew has:
- started the 5th grade, his final year at elementary school
- enjoyed another season of soccer
- attended a day camp with the Cub Scouts
- had several adjustments to his leg braces
- had several follow-ups with various specialists
- been to Florida twice to visit Dr. Paley
- turned 11 years old!
We first visited Dr. Paley in October on Fall Break, a routine follow-up for us. It’s been two years since his last leg correction and Dr. Paley sees him yearly to check progress. His legs have been doing great, though are experiencing lack of extension and starting to involuntarily bend once more which will require more correction eventually. Surgical correction of his legs will be required until he stops growing.
Because his legs are basically stable for the time being, Drew has expressed interest in pursuing lengthening of his arms. He spent a good portion of the summer weighing the options of enduring the process and has ultimately decided that he does want to lengthen his arms.
Drew has decided to lengthen his arms because, as an almost 11-year old boy (in a couple of weeks), he’s wanting more and more independence. We spent a day at an agriculture farm and was disappointed that he couldn’t roast his own hot dogs/marshmallows at the fire because the rods were too short for him to reach the fire. He wishes to bathe himself. And, he wants to dress himself.
So, we took the opportunity to speak with Dr. Paley about his thoughts. Dr. Paley requested we get a 3D CAT scan of both arms as well as both legs and to visit again, which we did in December at the beginning of Christmas Break.
So, with Drew and Holden in tow, visited Dr. Paley once again where we discussed an arm surgery for Drew. Drew’s hand remains bent at a 90 degree angle at his wrist. He doesn’t have the ability to pull it upwards so an ulnarization will help stabilize his wrist so his hand is in a straight position. We only have to do the right side. Six to 12 months after the ulnarization, he can start lengthening.
So, now I’m deep into arranging all of the details and weighing options. Unfortunately, I’ve learned that the on-site housing for patients is full. We can stay in a hotel with a medical discount, but that’s still going to be over $100/night. There is a Ronald McDonald House in Miami, two hours away so I think we’ve landed on staying in WPB until Drew’s surgery is complete and he’s discharged from the hospital and then spending the rest of our time in Miami. We’ll have to stay a couple of weeks for follow-up visits to Dr. Paley.
Another interesting experience became the center of our attention recently. About a week ago, I noticed a plum-sized bruise on Drew’s thigh. When I felt it to see if it was painful, I immediately felt that there was a large lump, about the size of an orange. It had defined edges and felt very strange. Drew’s keloid scar from his surgeries in 2016 ran directly through the bruise and lump so it seemed concerning to me so I reached out to Paley’s team to seek guidance.
The bruise was as painful as any bruise goes, but didn’t seem to hinder Drew in any way. They ordered an x-ray, bloodwork and an ultrasound based on the level of risk Drew was for infection. Apparently, years after surgery, an infection can be sparked by some event and it would need to be treated immediately.
Bloodwork revealed his platelets had almost dropped by half and had a few markers that indicated infection or inflammation. The ultrasound noted some “echogenic” tissue (an increase of reflected light, indicating an abnormality). The team indicated that Drew needed to be seen. In Florida. In a couple of days.
This was a tough pill to swallow. Making an unplanned and expedited trip to Florida. What if it turned out to be nothing?!? I just so desperately wanted to avoid the expense and hassle of such a task, but the concern for Drew’s health was still a priority. At just about the time I had accepted that we need to make the trip, the lump began to shrink. Given that Drew had fallen a couple of times and it was getting better, the fact that it was inflammation seemed to be the cause so we gradually lowered our concern and opted to not make a trip to Florida after all. Whew.
So, that’s where we stand. And the first half of 2019 will probably move very fast for us. It always does when you’re anticipating an expensive life stressor. Every time we get ready for an adventure like this, I always think to myself, “How on Earth are we going to get through this?!?” And it amazes even me sometimes to consider how many times we’ve gone through this and survived. But survive we did and survive we will. Now I must jump in head first and go make some reservations!