We're at the end of the line. Sort of. The reality is that cerebral palsy has no real end. We are, however, near the end of this particular journey. Sarah Kate finished the 3-week intensive program today, and will drop down now to only two days per week of physical therapy. Thankfully, both days will be in Decatur most of the time; we will only have to return to Birmingham every six weeks or so.
I was not there this morning because of a prior commitment (hosting a scrapbooking retreat for my customers on beautiful Smith Lake!), so Papa and Bebe took Sarah Kate to therapy and Scott met her there. Thursday had been rather difficult - Sarah Kate was sick of going and expressed her displeasure by whining, pouting, crying, and even hitting Carrie (her proclaimed favorite therapist) in the face. She went to time out, and I went to McDonald's for a cinnamon roll. Not long after returning, I headed out again for Barnes & Noble. She did ultimately come around and work. I expected Friday to be better, because I had given her a little pep talk about Daddy coming and it being the last day.
Friday wasn't better. Sarah Kate was no better for Scott than she had been for me. Lisa ("bad cop") was also back, and even her presence didn't help. A good bit of the day was spent doing an end-of-session evaluation. Sarah Kate was expected to repeat certain tasks and exercises from the first day to see what changes had taken place. The improvements were: the ability to dress and undress herself, standing from the floor without support, walking further during a timed six minute walk, and walking in SMO's instead of AFO's. Her gait has also visibly improved, though it's still a long way from typical, and she can walk up and down 5-6 steps with only one hand held.
From this point forward, the main aim of the physical therapy is keep her on track and to prevent bad habits from forming. We're heading into the summer season, and I've already gotten my Point Mallard pass (Sarah Kate is still young enough to get in free). Sarah Kate was given a generous gift this week of a new wooden playset, which Scott is working to assemble this weekend. The motion of swinging is an excellent core strengthening exercise, and the ladder and "rock wall" steps are also good physical training for her. Lisa recommended that we get her a tricycle, as well, which we will probably do in the next few days (tricycles are fairly inexpensive).
As far as our insurance is concerned, we believe we've reached the end of the line in terms of what Blue Cross Blue Shield is going to pay. A meeting is scheduled for May 26 to discuss the issue, but the meeting is about rhizotomy cases in general, not Sarah Kate's case in particular. After that meeting, we should know what the "final word" is and can begin negotiating our portion. Whatever the outcome, we have done the best for our daughter and know that we would make the same choices again.
Thank you all for your prayers and words of encouragement. It's been a tough road, and I'm very happy to be nearing the end of it. Continue to remember us, though, as we move into "regular" life. Ordinary challenges can be the most challenging of all.
"Not by might, nor by power, but by my spirit, declares the Lord." - Zechariah 4:6
Friday, May 12, 2006
Tuesday, May 09, 2006
12 Days and Counting
Sorry for the lack of a blog post last week...it was just too much to manage. My cousin died of cancer last weekend (he was 26) and Papa & Bebe went to Orange Beach for a few days. Sarah Kate and I each got a cold-like something, followed closely by a stomach bug, and things just didn't go well. She still didn't complain and worked as hard as she could at therapy, but she was definitely not herself. She perked up on Friday, just before we went home for the weekend (how did she know?)
I have to confess to a bit of disappointment over the last week. Although Sarah Kate has done fine, her progress just wasn't what I had expected. Maybe I had unrealistic expectations, but I don't think so. Scott agreed when he saw her this weekend - there were improvements, but only minor ones as far as we could see. The biggest improvement we could see was in her stamina - her quantity of walking has increased tremendously, although the quality has improved only slightly.
This week started off a little better, and I am "up" again. Lisa made a new, homemade, pair of braces for her to try this week. They are similar to the old ones (called AFO's - ankle foot orthotic), but are much shorter and have a notch cut out of the back where the Achilles tendon is located (called SMO's - supramalleolar orthotic). The purpose is to allow her foot to flex more while still supporting her weak ankles. The intent was for Sarah Kate to try the SMO's this week in therapy and then make a decision whether or not to switch. The difference was immediate, though, and Lisa said she should definitely switch to an SMO. Sarah Kate's gait was more typical and fluid - more bend in the knee and less of the halting stiff-legged walk. Late yesterday afternoon, we went to visit a friend of mind, Suzanne, who lives near Papa & Bebe. I turned around at one point to see Sarah Kate walking across the yard - she has never been able to walk easily in grass before! Flat, solid surfaces have been the only places she could manage unassisted. The yard was relatively flat, but very uneven and somewhat soggy from all the rain. Small victories!
Today was a little tougher. Sarah Kate doesn't quite understand the concept of "three weeks," so she doesn't realize how close she is to being finished with this leg of her journey. The first week was kind of fun for her, because she was getting to see Lisa and Carrie again and play in a new place. Last week the novelty had begun to wear off a little, and now you can see in her face that she is wondering when it's ever going to end. She asks every day now when we leave if we can go home and see Daddy. Tomorrow we will get to see Sophie for a few minutes, and I hope to have good news on that front, as well.
Thank you again for all of your prayers. We are beginning to see the proverbial light at the end of the tunnel!
Come to me, all you who are weary and burdened, and I will give you rest. - Matthew 11:28
I have to confess to a bit of disappointment over the last week. Although Sarah Kate has done fine, her progress just wasn't what I had expected. Maybe I had unrealistic expectations, but I don't think so. Scott agreed when he saw her this weekend - there were improvements, but only minor ones as far as we could see. The biggest improvement we could see was in her stamina - her quantity of walking has increased tremendously, although the quality has improved only slightly.
This week started off a little better, and I am "up" again. Lisa made a new, homemade, pair of braces for her to try this week. They are similar to the old ones (called AFO's - ankle foot orthotic), but are much shorter and have a notch cut out of the back where the Achilles tendon is located (called SMO's - supramalleolar orthotic). The purpose is to allow her foot to flex more while still supporting her weak ankles. The intent was for Sarah Kate to try the SMO's this week in therapy and then make a decision whether or not to switch. The difference was immediate, though, and Lisa said she should definitely switch to an SMO. Sarah Kate's gait was more typical and fluid - more bend in the knee and less of the halting stiff-legged walk. Late yesterday afternoon, we went to visit a friend of mind, Suzanne, who lives near Papa & Bebe. I turned around at one point to see Sarah Kate walking across the yard - she has never been able to walk easily in grass before! Flat, solid surfaces have been the only places she could manage unassisted. The yard was relatively flat, but very uneven and somewhat soggy from all the rain. Small victories!
Today was a little tougher. Sarah Kate doesn't quite understand the concept of "three weeks," so she doesn't realize how close she is to being finished with this leg of her journey. The first week was kind of fun for her, because she was getting to see Lisa and Carrie again and play in a new place. Last week the novelty had begun to wear off a little, and now you can see in her face that she is wondering when it's ever going to end. She asks every day now when we leave if we can go home and see Daddy. Tomorrow we will get to see Sophie for a few minutes, and I hope to have good news on that front, as well.
Thank you again for all of your prayers. We are beginning to see the proverbial light at the end of the tunnel!
Come to me, all you who are weary and burdened, and I will give you rest. - Matthew 11:28
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