Today was a fun day of dyeing Easter eggs and Easter egg hunts at the community church and in our backyard. It’s a different year for us. We normally walk to the community Easter egg hunt because it’s right behind our house (probably 700 yards) and then go to church. This year we drove because Christopher cannot walk that far. We are not attending church because we need Christopher to stay healthy before possible surgery next week. It puts what we are doing in perspective. It was hard to watch the other kids run for the Easter eggs and Christopher just limp slowly to retrieve them. I loved having the Easter egg hunt in the backyard, because younger brother Collin agreed not to run since ‘Bubba’ can’t run. They have their moments but that was a sweet one.
Realizations and Guilt
I realized something today – over the past year when Christopher and I were shopping, he’d lag behind. I would quickly tell him to quit lallygagging and catch-up. It happened a lot. I didn’t realize it was this darn disease holding him back. He was doing the best he could to catch up. I apologized to him today and he said, ‘Mom, how did any of us know?’ His teacher came by a couple of weeks ago and said that she had watched Christopher slide down hill over the last few months. She said he never once complained and she could tell he was in pain. He still doesn’t complain to this day. I’m thankful that I am close with him, that I can see it in his eyes before he even tells me he is hurting.
Christopher hasn’t felt like stretching much lately because he overdid it at physical therapy on Thursday. He still cannot find a happy medium between too much and too little. In true Christopher form, it’s all or nothing, but he is working on that. We perform stretches twice a day and Dr. Standard says he will be stretching until his senior prom.
He had some extra encouragement today; Trixie stayed with him during all of his stretches. She’s such a cutie pie and Christopher loves her more than anything. He will miss her next week, and I have to admit, so will I.
Grateful Beyond Words
We are four days away from leaving Baltimore for our post-op appointment. Christopher will have home bound schooling the morning of Wednesday, April 27th and then we will jet out of town. Our post-op appointment is on Thursday, April 28th. I am so grateful to work for such an amazing company. I truly love what I do and that is such a blessing. All of us work remotely and if I didn’t have this job, I’m pretty sure I would be unemployed or taking family medical leave. Christopher is home with me 24/7 every day of the week. Where else can you work and take care of your sick child? My co-workers are amazing and the health insurance is great.
Our health insurance changes May 1st and Joel (President of my company) made sure we are covered. I had a moment of panic this week and Joel eased my mind and had the insurance folks call me that evening to explain the new benefits. I can never express my gratitude and thanks to my co-workers. I will never be able to repay their kindness and generosity, but I’m sure going to try.
Christopher had X-rays locally this last Thursday. I’m not a doctor, but when I viewed them I thought the right hip looked like it had regrowth. Compared to the previous X-rays, the hole in his hip is looking white. I hope this is the white fluff that Dr. Standard wants to see. We sent the X-rays to him electronically; he will review when he gets back from vacation on Tuesday. One of his fellows said it looked promising, so we are hopeful this means the surgery was a success. We are trying not to get our hopes up until we hear from the doctor, but we are sure praying for great results. The right hip femoral head is looking nice and round.
I found out today that if you book a flight with Southwest you can have a one-time medical emergency change. When I booked our flights to Baltimore more than a month ago, I didn’t know we had the possibility of getting the left hip surgery performed.
This time I extended our rental car to a week because it’s easier to reduce the days than to add more. I discovered how expensive it is to add days on our last trip. So far, our journey to Baltimore has cost us a pretty penny. It is only money and what is most important is Christopher’s health. I know now that you should schedule your flights and rental cars longer than the days you need and reduce if necessary. It will cost less that way. If Dr. Standard says we are a go, then surgery is tentatively scheduled for Friday, April 29th. We are ready.
I had a slight breakdown a couple of weeks ago when I realized that we are messing with his bones. I know we are on the correct path, but sometimes it overwhelms me if I think about it too long. I worry about one leg being shorter than the other, which is typical for Perthes. So far, we are even in both legs. I noticed the other day at physical therapy that one knee is slightly higher than the other. I hope it is just me being very sensitive to our current situation. I had a good cry that day and I have moved on. At least I don’t cry every day like I did in the beginning. It’s a process that I know other Perthes parents go through too. Our children are not dying, but their childhood is being stolen from them and it’s hard to watch. We’re hoping and praying that by next Easter that Christopher will be hopping along with Peter Cottontail all the way down the bunny trail. Hippety, Hippty Hop – Happy Easter Everyone!