Back to Nemours Childrens Hospital …
One year and one week ago was my last blog post — Robert was one week post cast removal and was bravely going to school in his wheelchair to see his friends and teachers for the first time since his leg surgery on February 23, 2022. Looking back, it’s absolutely unbelievable how far Robert has come. While incredibly hard, with every day that passed Robert was stronger than the day before. Every day was a step forward.
So, why am I writing today? Well, we’re heading back to Nemours this week for Robert’s fifth surgery (and unfortunately won’t be his last). Not feeling like a step forward. But this surgery is a good news / bad news situation.
- Good news = the “eight plates” (named because of their figure 8 shape) that were inserted into Robert’s growth plates in his knees last year have already worked! His knocked knees are corrected, and his legs are straight. Which means he has grown enough to allow for the straightening to happen. The hardware has to be removed to ensure it doesn’t overcorrect his knees and cause bowing.
- Bad News = another surgery to remove the hardware. While this surgery (thankfully outpatient) doesn’t light a candle to what Robert went through last year, it’s another surgery. And another time going under anesthesia. And more pain and discomfort for our sweet boy. And more days of being hesitant to walk. Heartbreaking.
We head up to Delaware tomorrow for surgery on Wednesday and plan to fly home on Thursday. Please send positive vibes and prayers for Robert this week. With every surgery, he has become a bit more scared than the one before. When we told him about surgery a few weeks ago he broke into tears saying, “why did you tell me? I’m scared.” I get it. But, today, our resilient little guy bravely explained to his friends at school all about his surgery – he never ceases to amaze us.
He asked me last night, “am I not going to be able to walk again after this surgery?” Exactly the question I asked Dr. Mackenzie. The answer: “it depends – every child is different.” Some are able to walk almost immediately, and some may take a couple of days before they want to walk and will likely be sore for a week or two. Robert looked at me and said “well, I’m really tough, so I think I’ll be able to walk quickly.” Yes, yes, you are.
I wish I would have taken the time for blog posts over the past year – though I’ve captured the many highs and lows in photos on our @rootingforrobert Instagram account. And I will post a blog update again on Wednesday following his surgery.
Thank you for Rooting for Robert and for all of the love and prayers. We couldn’t make it through this Morquio journey without you. I’ve posted a few recent photos of Robert looking so strong from the past couple of months. Praying this surgery is a minor setback and we’ll continue to take steps forward very soon.