After seeing a video earlier this week of a special little boy's first steps, I was inspired to create a video montage of Sarah Kate's progress from before the selective dorsal rhizotomy up to today.
Cross-posted at BringingtheSunshine.com
Thursday, August 26, 2010
Tuesday, July 20, 2010
I'm Still Around
If you're a first time visitor, you'll notice right away on this page that all of the posts are old. Really old. This blog was originally created to document (for friends and family) my daughter's selective dorsal rhizotomy and the therapy that went with it in that first post-operative year. I haven't forgotten about this blog, choosing instead to leave it up in case there were other families who might be interested in following her story.
If you'd like to read more about my special daughter and her special brother (and their ordinary mom), visit us at BringingtheSunshine.com.
If you'd like to read more about my special daughter and her special brother (and their ordinary mom), visit us at BringingtheSunshine.com.
Thursday, November 02, 2006
Fall
What a year we have had! Last November, Sarah Kate was using a walker and we were preparing for a long year ahead with the surgery and physical therapy. Now, she is walking independently, and is even taking dance lessons (it's what they call pre-ballet, and she's not exactly preparing for a career in choreography). We are officially out of the woods financially with respect to the therapy, and have been looking forward to the future. God has blessed us.Ironically, the future has changed. Scott has accepted another job and we will be moving "home" as soon as our house sells. It's been a difficult decision for us, but one that we believe God has led us to make. Every concern that we have had has been resolved and there is nothing holding us back now. In addition, if we have learned anything this year, it is that it will be nice to have help with Sarah Kate. Who knows? Maybe I will even go back to work sometime down the line. Whatever happens, we are trusting the Lord.
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. - Jeremiah 29:11
Friday, May 12, 2006
Time Out, Finally
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
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
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
Thursday, April 27, 2006
Uno, Dos, Tres, Cuatro
Sarah Kate has just finished Day 4 of UEU, and she is doing great! No battle of the wills has been necessary, and for that I am truly thankful. She has been extremely cooperative and has worked very hard every day. I don't think I could work out for 3-4 hours at a stretch every day, but she has done it without complaining a bit. I have let her choose each day whatever she wanted to eat for lunch (I know they say food shouldn't be used as a reward, but we've gotta eat....) and she has requested Mexican food every day. I did manage to sway her toward Taco Bell this afternoon because we are on the verge of being on a first-name basis with the folks at Habanero's.
We hit a little snag earlier in the week. Sarah Kate had a slight fever Tuesday night, and although she seemed alright the next morning, about midway through UEU on Wednesday she felt a little bit warm. We were just down the hall from the after hours clinic so we had them check her temperature, which was 101.1. I couldn't believe she had been working so hard even with a fever. We left early and I brought her back here to rest. She took some Motrin and slept for about 3 hours in the afternoon and seems to be much better today.
I could see a difference today in Sarah Kate's stride after being in the Adeli suit. It is longer and more typical-looking. She is also doing a better job of walking with her arms down, although she still has to be reminded to do so. A few other things they are working on during these 3 weeks are: learning to dress herself, learning to jump, and stepping on/off a curb without support.
We are enjoying it here at Papa and Bebe's house. I haven't had to do a thing since I've been here (Bebe even did our laundry!) and Sarah Kate has enjoyed being able to look out in the morning and see the horses. Papa has a brand new colt that she is quite enthralled with, and she also likes riding to the barn and back in Papa's golf cart. The drive in to UEU is only about 30 minutes, most of it on the interstate, so that's not too bad.
Sarah Kate will be working with Lisa one-on-one on Friday morning, and she jokingly told Sarah Kate to "get ready" when we left yesterday. After that we will be going home to Decatur until Sunday afternoon.
Have a wonderful day!
The LORD has done great things for us, and we are filled with joy. - Psalm 126:3
We hit a little snag earlier in the week. Sarah Kate had a slight fever Tuesday night, and although she seemed alright the next morning, about midway through UEU on Wednesday she felt a little bit warm. We were just down the hall from the after hours clinic so we had them check her temperature, which was 101.1. I couldn't believe she had been working so hard even with a fever. We left early and I brought her back here to rest. She took some Motrin and slept for about 3 hours in the afternoon and seems to be much better today.
I could see a difference today in Sarah Kate's stride after being in the Adeli suit. It is longer and more typical-looking. She is also doing a better job of walking with her arms down, although she still has to be reminded to do so. A few other things they are working on during these 3 weeks are: learning to dress herself, learning to jump, and stepping on/off a curb without support.
We are enjoying it here at Papa and Bebe's house. I haven't had to do a thing since I've been here (Bebe even did our laundry!) and Sarah Kate has enjoyed being able to look out in the morning and see the horses. Papa has a brand new colt that she is quite enthralled with, and she also likes riding to the barn and back in Papa's golf cart. The drive in to UEU is only about 30 minutes, most of it on the interstate, so that's not too bad.
Sarah Kate will be working with Lisa one-on-one on Friday morning, and she jokingly told Sarah Kate to "get ready" when we left yesterday. After that we will be going home to Decatur until Sunday afternoon.
Have a wonderful day!
The LORD has done great things for us, and we are filled with joy. - Psalm 126:3
Tuesday, April 25, 2006
Back in the Saddle Again
Monday marked our return to Birmingham for three weeks of intensive physical therapy. We weren't able to get the apartment again, so this time we are staying with my dad and stepmom ("Papa & Bebe"). Their home is about 30 minutes to the Children's South therapy office, but that's alright because it's not crucial that we be close like it was following the surgery when Sarah Kate was unable to ride for more than a few minutes in the car. Although it is a longer drive in each morning, Sarah Kate only goes once per day (instead of twice like before), and it's nice to have some help with her (plus I don't have to clean or cook!) Papa & Bebe have horses, a dog, and multiple felines, so Sarah Kate is going to enjoy it here. We will be coming home on Fridays and returning on Sundays.
Yesterday was her first day of UEU ("Universal Exercise Unit"), as they call it, but the first day was primarily an evaluation of her progress and any "body issues" she has, such as joints that aren't positioned just right. They also studied her flexibility and watched her do things like walk, sit, etc. The evaluation took about three hours total and she began working today.
We arrived at 8:30 this morning and her session started off with heat and massage. After that, she did some exercises (disguised as play) to help strengthen her trunk, and did a "6-minute walk" where they got her to walk down and back in a long hallway for 15 minutes (just kidding!) and kept track of how many times she fell down (or didn't). Following the 6-minute walk, she did some exercises using pulleys with sandbag weights. She got a chance to have snack (cheese, peanut butter crackers, peanuts, and apple juice), and then was fitted into the Adeli suit to work some more. She finished up about 1:00 and then we went for some well-deserved lunch - she requested Mexican food!
The Adeli suit (pronounced like where you'd go to get a sandwich) is a broad-shouldered vest, knee pads, and shorts set with a series of hooks and velcro straps, and a pair of Vans tennis shoes modified to work with the suit. The therapists take a lot of little bungees and connect them to various points on the suit (I can't begin to estimate how many options exist) and onto the shoes. The purpose is to hold her body as close to perfect alignment as possible - hips, ankles, knees, thighs, back, and so on. She then does regular therapy activities in the suit, and the intent is to train the body (including the brain) to do things the "right" way. If you'd like to read more about it, follow this link: http://www.adeli-suit.com/English/adeli_suite.htm
We got some news on the insurance front! Scott heard from our case manager at BCBS today and they have worked out an agreement with Children's Health System to cover the 15 UEU visits at a reduced amount. The agreement is instead of, not in addition to, the 30 visits with the cap that we were given last week. What that means for us is that instead of buying a loaded Toyota Camry, we only owe half of one :-) Although that sum is still significant, it's much more manageable than what we were looking at just a few days ago. It's not coming as quickly as we would like sometimes, but God is providing for us. Thank you to everyone who has prayed for us and continues to pray for us.
I'll do my best to blog more frequently during the next three weeks (I'm not cooking or cleaning, so I should have time, right?) I appreciate all of you who have faithfully read the blog and encouraged me throughout this journey. I am constantly surprised at the messages that I receive and to hear exactly who is reading the blog. God bless you all!
Be joyful in hope, patient in affliction, faithful in prayer. - Romans 12:12
Yesterday was her first day of UEU ("Universal Exercise Unit"), as they call it, but the first day was primarily an evaluation of her progress and any "body issues" she has, such as joints that aren't positioned just right. They also studied her flexibility and watched her do things like walk, sit, etc. The evaluation took about three hours total and she began working today.
We arrived at 8:30 this morning and her session started off with heat and massage. After that, she did some exercises (disguised as play) to help strengthen her trunk, and did a "6-minute walk" where they got her to walk down and back in a long hallway for 15 minutes (just kidding!) and kept track of how many times she fell down (or didn't). Following the 6-minute walk, she did some exercises using pulleys with sandbag weights. She got a chance to have snack (cheese, peanut butter crackers, peanuts, and apple juice), and then was fitted into the Adeli suit to work some more. She finished up about 1:00 and then we went for some well-deserved lunch - she requested Mexican food!
The Adeli suit (pronounced like where you'd go to get a sandwich) is a broad-shouldered vest, knee pads, and shorts set with a series of hooks and velcro straps, and a pair of Vans tennis shoes modified to work with the suit. The therapists take a lot of little bungees and connect them to various points on the suit (I can't begin to estimate how many options exist) and onto the shoes. The purpose is to hold her body as close to perfect alignment as possible - hips, ankles, knees, thighs, back, and so on. She then does regular therapy activities in the suit, and the intent is to train the body (including the brain) to do things the "right" way. If you'd like to read more about it, follow this link: http://www.adeli-suit.com/English/adeli_suite.htm
We got some news on the insurance front! Scott heard from our case manager at BCBS today and they have worked out an agreement with Children's Health System to cover the 15 UEU visits at a reduced amount. The agreement is instead of, not in addition to, the 30 visits with the cap that we were given last week. What that means for us is that instead of buying a loaded Toyota Camry, we only owe half of one :-) Although that sum is still significant, it's much more manageable than what we were looking at just a few days ago. It's not coming as quickly as we would like sometimes, but God is providing for us. Thank you to everyone who has prayed for us and continues to pray for us.
I'll do my best to blog more frequently during the next three weeks (I'm not cooking or cleaning, so I should have time, right?) I appreciate all of you who have faithfully read the blog and encouraged me throughout this journey. I am constantly surprised at the messages that I receive and to hear exactly who is reading the blog. God bless you all!
Be joyful in hope, patient in affliction, faithful in prayer. - Romans 12:12
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