On Tuesday, I provided some nuts-and-bolts details about Sarah Kate’s surgery last week.
Last week, I provided a more emotional and visual description. I knew when I planned the posts, however, that I would unintentionally omit some things that you may have been curious about. Since I was able to find very little information about the realities of procedures like Sarah Kate’s before it happened, I opened up the floor for questions from you to fill in the gaps in hopes of helping other families who may be facing a similar situation. Following is a roundup of the questions I received (and remember, your mileage may vary):
Will she be going to school?/How will she manage school?
She is not going to school. Her 504 plan was adjusted prior to her surgery to request homebound schooling for the rest of the year, as the six week post-op mark will fall during the last week of school for our district. We have not yet heard from the homebound teacher, but my guess is that she will do very little schoolwork during her absence. The last week that new material was going to be introduced was the week of her surgery; the week after was our district’s spring break and the rest of the year is review and standardized testing.
Sarah Kate is a straight-A student so she should be fine to start sixth grade without the review. We have not been told if they will attempt the standardized testing. All students in her school are issued MacBook Air computers so many of her assignments and some extra activities, such as Storybird, are available to her at home, as is a copy of Rosetta Stone Spanish.
For my part, I have mandated no “screen time” (unless it’s an approved learning activity) during regular school hours. We purchased a Snap Circuits kit for her, she has received beading and watercolor art kits as gifts, she can read books, she can build with LEGOs, and she can work on the computer using her Rosetta Stone Spanish software, Mavis Beacon Keyboarding Kidz, or other approved educational activities.
She has asked me to teach her how to knit, so we’ll probably work on casting on and garter stitch next week (assuming I can remember how…). I do allow her to check Edmodo once each day during school hours in case her classmates or teacher have left messages for her while they are at school. She is planning to return to school on the last day to see her friends and we will take her to an awards ceremony in May (that’s a surprise!)
How long will Sarah Kate be in casts?
Four weeks total: two weeks in one set with her legs at a slight bend, two weeks in a different set with her legs in full extension (she received her second set yesterday). After that she will wear knee immobilizers for two more weeks – during those two weeks she will begin to move in small amounts, but will not weight bear until six weeks post-op.
What activities do you think she can enjoy for now?
Pretty much anything that she can do sitting down – computer, TV, LEGOs, painting, etc., but she can also wheel herself around the neighborhood if she likes (I haven’t convinced her to do that yet). She learned right quick, however, that she has to be careful what video games she chooses – games with a lot of action cause her to jump or startle, which can aggravate her legs. Her legs have to remain elevated all the time to prevent sores from developing in her heels. She can travel in the car, but it’s tricky both to ride and to get in and out because of her straight legs, so we’re sticking close to home except for doctor appointments and church.
Does she have an iPad or other device to help keep her occupied?
She has an iPad available to her, but it’s the one that we use for Nathan so she will have to fight him for it if she wants to use it. 😉 However, she has a Nintendo DS, a Kindle Fire, and my old castoff iPhone available to her all the time – not to mention my very old but still functional desktop iMac – so she has plenty of screens to keep her busy – outside of regular school hours, of course. 🙂
Any plans for friends to visit her?
A few friends have dropped by, and I’m SO thankful for them. The first week she was home the two girls who live down the street came by for a little while during the day because it was their spring break, and her friend Ben and his brother dropped by with flowers. Earlier this week, the boy who lives down the street came by for a couple of hours (parochial school spring break is this week) to play games. Her buddy, Connor, also came by a few days ago and brought her a gift of LEGOs.
Do they suspect she will need another surgery to realign things again once she is done growing?
Gillette was encouraging about future procedures. They indicated that Sarah Kate has very little residual spasticity since her selective dorsal rhizotomy in 2006, so the odds are better-than-most that she will not need further surgeries (but no guarantees, of course!) My understanding is that the problems she has had this past year are primarily, if not exclusively, related to her rapid growth and that once these issues are corrected, they are not likely to recur.
How did you decide on the surgery and what did they do?
Our decision was based on the recommendation of Gillette and Dr. Doyle. Many factors went into their recommendation, but the one that took precedence was long-term outcome. Soft tissue procedures don’t require as much downtime, allowing the patient to see improvement quickly. However, current research has shown that bone procedures like Sarah Kate’s tend to be better in the long run, despite the lengthy recovery and rehab required. Sarah Kate’s doctors (in Birmingham and at Gillette) opted for the bone procedure for that reason.
The actual procedures were femoral osteotomies (removing a wedge of bone from her femurs just above the knee, pushing the “edges” together, and inserting plates and screws to hold them in place) and patella tendon advancements (surgically shortening the tendons that hold the kneecaps in place). After the casts are removed, she will have Botox injections in her psoas (hip flexor). All three procedures will be performed on both legs.
Did you consider less invasive surgeries like SPML first?
I hate to answer this question with “sort of and I don’t know” but that’s the honest answer. Sarah Kate’s orthopedist in Birmingham did not mention SPML specifically to us as a possibility, but I believe it was considered and discarded by the team at Gillette. When the orthopedic team here was debating what to do for her, Dr. Doyle decided she would be best served by having a gait analysis done, and because they knew our family and knew that we were willing to travel wherever they recommended, we ended up at Gillette (FYI: gait analysis is being done in Birmingham, but their experience level is much lower).
Gillette is one of the top (maybe THE top?) clinics for spastic cerebral palsy in the country, but they also do something very few other children’s clinics do – they have a “lifetime” program that continues to follow individuals with cerebral palsy into adulthood. That lifetime program gives them greater insight into the long-term outcomes of various procedures. The gait lab team at Gillette reviewed all of her gait data, compared it against all of their data for the various options and their outcomes and came up with a recommendation that they believe has the highest probability of longterm success.
What’s the prognosis?
This type of surgery is a “one step back, two steps forward” deal. She will lose some strength during the six weeks post-op downtime, and it will take her awhile to regain what was lost from that – not including the regression that got us to this point. Dr. Doyle indicated that at three months post-op she will still be behind where she was when she went in for surgery.
I anticipate that it will take six months and possibly as long as a year for her to regain what was lost – both due to the growth spurt and the surgery itself. She should be in good shape in terms of ability to get around by the time school starts in mid-August, though we have been told she will likely tire easily and may need a wheelchair or other support at times.
How is Sarah Kate dealing with it all?
As always, she’s a trooper. She isn’t happy about being stuck at home and all of the other things that tend to suck about this situation, but she hasn’t been crying or gotten upset, either. I believe her primary emotion is frustration, but she was somewhat frustrated before with the limitations she had developed over the past several months, so she’s able to look at the current situation as a minor setback in furtherance of the bigger goal, which is to get her back to where she was a year ago.