We're now less than two weeks away from the surgery. We went for our last pre-op visits this week. On Monday, Sarah Kate had an MRI. After the nightmare we had last year, we weren't looking forward to the experience, but things went great this go 'round. On Tuesday morning, we met with Dr. Oakes, the neurosurgeon, and she had a pre-screening with anesthesia. We are supposed to show up at 8:30 a.m. on the morning of January 4, and it's quite a relief that we don't have to leave home before daylight that day (not that I'll get any sleep, but at least maybe Sarah Kate will!) We plan to wake her up and put her in the car at 7:00 in her footie pajamas (she won't be able to eat breakfast and they'll just take her clothes off once she gets there).
Good news! Jane Bryant from the Homewood Church of Christ called on Tuesday evening and it looks like we will be able to get into one their apartments (free of charge and for the length of our stay in Birmingham, which is expected to be until the end of January). We have a backup, Alabama Power's Family Place, for the first week beginning on the expected day of her release (Saturday, January 7), but the stay there is limited to only one week.
"Woman to Woman," the ladies Bible study group of which I am a part, has generously offered to come and pray for Sarah Kate and I on Tuesday, January 3, the day before the surgery. These wonderful, caring women are planning to take time out of their busy days to spend an hour in prayer at our home. I cannot tell you what a special gift it will be!
For now, we are concentrating on Christmas. Many thanks to all of you who have already begun to inquire about how you can help. The greatest need we have right now is for your prayers.
Thanks be to God for his indescribable gift! - 2 Corinthians 9:15
Thursday, December 22, 2005
Sunday, December 18, 2005
The Adeli Suit Comes to Birmingham!
The following article was in The Birmingham News on Friday, December 16:
Children's expands cerebral palsy therapy
Russian suit helps patients to strengthen muscles
Friday, December 16, 2005
ANNA VELASCO News staff writerFor a person with cerebral palsy, just sitting up or walking can be an athletic challenge. Muscles are weak, tight or spastic, making alignment of the body for proper movement difficult.
Children's Hospital has just bought six suits developed from Russian technology that help children with cerebral palsy strengthen their muscles and develop proper movement. Some even learn to walk after intensive therapy with the "Adeli Suit."
Making Strides, an Alabama charity dedicated to providing intensive therapy to children with cerebral palsy, gave Children's Hospital $15,000 Thursday to pay for the suits and for training the past two weeks to teach therapists how to use them. The gift allowed Children's Hospital to fly over a Russian doctor who specializes in use of the Adeli Suit.
The charity plans another $20,000 donation to Children's Hospital early next year to buy more suits, at $2,500 each, and to help equip another therapy site at Children's South off Interstate 459, in addition to the hospital therapy department.
Children's started intensive cerebral palsy therapy in 2004 with the help from an initial $15,000 gift from Making Strides. The hospital has provided the three-week, four-hour-daily therapy for 20 patients since then. Therapists used a suit similar to the Adeli and other types of exercises.
"We've seen kids come in not being able to walk and leave being able to," said Lisa Steed, a physical therapist at Children's.
But those sessions have been limited because of staff and equipment constraints. The training these last two weeks has increased to 12 the number of therapists trained in the intensive techniques, up from four. Children's said it hopes to give as many as 50 children next year the chance for intensive therapy including use of the Adeli suit.
Making Strides:
The suit - which hospital officials said is much better than a similar product Children's has used - was designed in Russia originally as a device to help the cosmonauts adjust to low-gravity conditions in space. In the early 1990s, it was developed as a therapy tool for children with cerebral palsy and other motor problems.
It has a halter top and shorts connected by straps and small bungee cords that can be pulled in different directions according to each child's disability. The cords also can be attached to other parts of the body to produce proper body alignment and muscle use.
"It straightens up your posture," said Sheree York, director of physical and occupational therapy at Children's Hospital. "It gives you the feeling of muscles pulling the way they should so you can move properly."
After intensive therapy with the suits, the brain trains the muscles to remember the correct way to move, said Dr. Matvey Martyanov, of Russia, where the suits are part of standard therapy for cerebral palsy patients.
Not all will be able to walk after the therapy, but all patients should develop more physical endurance and better mobility.
Jerry and Phyllis Templeton founded Making Strides after they saw the improvement their two 10-year-old daughters made in other intensive therapy programs out of state. One has since learned to walk and another has gotten much stronger, although she is mostly restricted to a wheelchair, Jerry Templeton said.
"We have never focused on walking," he said. "It's about that child reaching the best level they can."E-mail: avelasco@bhamnews.com
Saturday, November 19, 2005
A Mystery of Faith Experience
Many of my friends and family have heard of my recent experience with Sarah Kate. Because it's quite lengthy, I'll pass on posting the narrative here. However, on Friday, November 18, Sarah Kate and I, along with my dear friend, Colleen Pearson, experienced the mystery of faith (thank you to Colleen for giving me those words). As a result (and I will be happy to share with you the details of our experience), I have begun to pray that God will heal Sarah Kate. I am no longer content with the prayers of "be with her" or for a "good outcome."
If I believe that God can work miracles - why would I not believe that he will work them in my presence?
I do not know what path God has chosen for Sarah Kate, or if he will choose to heal her. However, I do know that His desire is for me to ask for her healing and to have faith in His mighty power.
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you." - Matthew 7:7
If I believe that God can work miracles - why would I not believe that he will work them in my presence?
I do not know what path God has chosen for Sarah Kate, or if he will choose to heal her. However, I do know that His desire is for me to ask for her healing and to have faith in His mighty power.
"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you." - Matthew 7:7
Tuesday, November 08, 2005
The PT Evaluation
Sarah Kate and I went for the pre-op evaluation by the physical therapy group on November 7. It was 2+ hours of answering questions, stretching and measuring her, watching her do certain tasks, and a video of her movement. The purpose, as I understand it, is to give the therapists a baseline to start from following the surgery. They also provided us with pre-surgery stretching exercises to do, information about frequency and location of the post-op therapy, and a phone number for a possible free apartment. While we were there, they also showed me some video footage of an actual SDR procedure and several children pre- and post-op.
After watching and working with Sarah Kate, they told me what to expect in terms of functional gains after the surgery. The expectation is that she will be able to walk independently after the surgery, although she may still need quad canes for what they termed "community ambulation." In layman's terms, that means that she will be able to walk around the house, classroom, etc., without assistance, but will need help for longer distances, uneven surfaces, etc. They were quick to point out, however, that most children not only meet, but actually exceed the expectation given for them.
One other tidbit - although we were initially told that the post-op therapy would last for about a year, they have a new intensive exercise program that has been recently introduced. They told me that most likely Sarah Kate would be recommended for the program. Instead of the shorter, daily therapy sessions for a year, she would have daily therapy for 4-6 months, at which time she would take part in a program that would be 4 hours/day for 3 weeks and would incorporate the Adeli suit as part of the program, a very exciting possibility. After the intensive therapy program, the daily PT sessions would no longer be required, and instead Sarah Kate could participate in "regular" activities instead (such as dance, gymnastics, etc). We are encouraged by the possibility!
After watching and working with Sarah Kate, they told me what to expect in terms of functional gains after the surgery. The expectation is that she will be able to walk independently after the surgery, although she may still need quad canes for what they termed "community ambulation." In layman's terms, that means that she will be able to walk around the house, classroom, etc., without assistance, but will need help for longer distances, uneven surfaces, etc. They were quick to point out, however, that most children not only meet, but actually exceed the expectation given for them.
One other tidbit - although we were initially told that the post-op therapy would last for about a year, they have a new intensive exercise program that has been recently introduced. They told me that most likely Sarah Kate would be recommended for the program. Instead of the shorter, daily therapy sessions for a year, she would have daily therapy for 4-6 months, at which time she would take part in a program that would be 4 hours/day for 3 weeks and would incorporate the Adeli suit as part of the program, a very exciting possibility. After the intensive therapy program, the daily PT sessions would no longer be required, and instead Sarah Kate could participate in "regular" activities instead (such as dance, gymnastics, etc). We are encouraged by the possibility!
Monday, August 15, 2005
Moving Forward
We took the weekend to think about the surgery and talk it over, and decided to proceed. Scott is hesitant, and with good reason. This surgery is not a solution, it's just the best option we have available. He would like for Sarah Kate to be able to make the decision herself, but we don't have the luxury of waiting for that day, since the surgery should be done before age 4.
I called the nurse clinician in Dr. Oakes' office to let her know of our decision. She told me that the doctors are "excited" about Sarah Kate. She also gave us a surgery date of January 4, 2006. Although it seems like a long wait, there are a lot of activities and procedures that we have to go through between now and then. The wheels are in motion, though, and we began to tell all of our friends and family about it. Almost instantly, emails and phone calls began to flood in - offers of assistance and promises of prayers.
One of the many responses that we received was from Amy D., Sarah Kate's former Sunday School teacher. She and her family have recently faced a surgery on their little one, and she had the following to share:
I called the nurse clinician in Dr. Oakes' office to let her know of our decision. She told me that the doctors are "excited" about Sarah Kate. She also gave us a surgery date of January 4, 2006. Although it seems like a long wait, there are a lot of activities and procedures that we have to go through between now and then. The wheels are in motion, though, and we began to tell all of our friends and family about it. Almost instantly, emails and phone calls began to flood in - offers of assistance and promises of prayers.
One of the many responses that we received was from Amy D., Sarah Kate's former Sunday School teacher. She and her family have recently faced a surgery on their little one, and she had the following to share:
God has taken care of Sarah Kate every minute of her young life, including her rough and frightening beginning. I have faith that he'll continue to care for her during this new journey, as well.A song Jeff and I love by David Wilcox is called "Hold It Up to the Light." It's about facing life changing choices. A line in it says "God, if you gave me a vision, would I ever have reason to use my faith?" I think that is powerful and reminds me that I don't have to know all the details, because God has it all under his care. How awesome..
Thursday, August 11, 2005
The Clinic Appointment
Sarah Kate has been to LOTS of specialist appointments in the past year or so, and each time we went I would get all nervous and worried. Each time, however, we basically just heard what we already knew and I finally began to accept that not much can be done for her other that the physical therapy that we're already doing. I haven't even asked Scott to go the past several times, because these appointments are endless and I hate to make him take a day off of work (and it's always a whole day ordeal) to go. Instead, I have taken other support folks - my dad (Allen) and my stepmom (Betty), who live in the hospital's metro area, a few times and my friend (Jana Lites), once, who is just a really, really nice person (I can't think of any other reason in the world why she would have gone!).
When we made the appointment for Spasticity Clinic, I was hopeful but doubtful that things would be different. Spasticity Clinic is an office visit where you "get to" see four specialists on the same day - orthopedic surgeon, neurosurgeon, physiatrist (rehab medicine doctor), and physical therapist. They come in one at a time, but after they've all seen the patient, they get together and hash out amongst themselves what they think should be done, if anything, and report back. If anyone dissented from the recommendation (which they say pretty much is always the case), then they'll tell you the dissenting person's opinion, as well. One huge benefit I saw of going to spasticity clinic is that these specialists would actually TALK to each other, a rarity from what I've seen.
When Sarah Kate and I showed up for her appointment, we had my dad and stepmom in tow. My dad went back with us, and we went through the whole routine with each of the specialists. I'm one of those obsessive-about-information types, so I'm using the medical jargon - "grade 1 IVH" and "spasticity" and "no cognitive delays," blah, blah, blah. The neurosurgeon, Dr. Oakes, even teased me a little about the lingo and asked me what I thought they were going to recommend for Sarah Kate, which made me a little nervous because I didn't want to seem difficult. The nurse clinician told me later, though, that he likes parents like me (hope that's true!)After they all left, my analytical mind started to work. I figured that we'd pretty much know what the recommendation was based on who came back to talk to us. Orthopedic surgeon = muscle/tendon surgery, physiatrist = Botox and/or casting, physical therapist = status quo with maybe a change in her braces, and neurosurgeon = spinal cord surgery (SDR). I was right up to a point - typically that's how it works, but Dr. Oakes (the neurosurgeon) needed to talk more in-depth with another family that morning, so he sent Dr. Law (physiatrist) with the news instead. Although Dr. Law doesn't operate, he is highly involved with SDR surgery, so he was sent in to talk with us (although we were welcome to wait to speak with Dr. Oakes if we wished).
The recommendation was for Sarah Kate to undergo what is called a Selective Dorsal Rhizotomy (SDR).So what is SDR, anyway? In a nutshell, they will go into her spinal cord and determine which nerves are "misfiring" and causing the spasticity. They will permanently cut the rootlets of those nerves, which will reduce the spasticity (and it should not ever return). The surgery will take 4-6 hours and she will be hospitalized for about 5 days. Following the surgery, she will have intensive physical therapy daily for about a year. Most functional gains that she will be able to achieve will occur within that first year. Although a wonderful benefit of the surgery is increased physical capabilities, just as important is the fact that reducing the spasticity will prevent a lot of problems in the future, such as physical deformities, that would require additional surgeries/treatments, and pain caused by the spasticity as she gets older. The ideal time period for this surgery is between 2-1/2 and 4 years of age, because after age 4, motor patterns in the brain are deeply ingrained and harder to change.
I was completely shocked at the recommendation. I had been reading a great deal about it in the months leading up to the appointment, and it sounded very promising, but I hadn't really been able to find anyone who knew of a child like Sarah Kate having been recommended for the surgery. Most people that I talked to only knew of more involved kids having the surgery. Of course, I have also found that Sarah Kate is unique. Her CP only affects her legs - she has no cognitive, speech, social, or fine motor delays, which is apparently pretty rare. She's also tough as nails and very driven - one of her therapists even said one day that she really does her own therapy. I had hoped in the back of my mind that she would be a candidate for SDR, but I just didn't think it would happen. I was shocked and thrilled and terrified. The recommendation was also unanimous, which is apparently pretty rare, as well.
Now the deliberation begins...
When we made the appointment for Spasticity Clinic, I was hopeful but doubtful that things would be different. Spasticity Clinic is an office visit where you "get to" see four specialists on the same day - orthopedic surgeon, neurosurgeon, physiatrist (rehab medicine doctor), and physical therapist. They come in one at a time, but after they've all seen the patient, they get together and hash out amongst themselves what they think should be done, if anything, and report back. If anyone dissented from the recommendation (which they say pretty much is always the case), then they'll tell you the dissenting person's opinion, as well. One huge benefit I saw of going to spasticity clinic is that these specialists would actually TALK to each other, a rarity from what I've seen.
When Sarah Kate and I showed up for her appointment, we had my dad and stepmom in tow. My dad went back with us, and we went through the whole routine with each of the specialists. I'm one of those obsessive-about-information types, so I'm using the medical jargon - "grade 1 IVH" and "spasticity" and "no cognitive delays," blah, blah, blah. The neurosurgeon, Dr. Oakes, even teased me a little about the lingo and asked me what I thought they were going to recommend for Sarah Kate, which made me a little nervous because I didn't want to seem difficult. The nurse clinician told me later, though, that he likes parents like me (hope that's true!)After they all left, my analytical mind started to work. I figured that we'd pretty much know what the recommendation was based on who came back to talk to us. Orthopedic surgeon = muscle/tendon surgery, physiatrist = Botox and/or casting, physical therapist = status quo with maybe a change in her braces, and neurosurgeon = spinal cord surgery (SDR). I was right up to a point - typically that's how it works, but Dr. Oakes (the neurosurgeon) needed to talk more in-depth with another family that morning, so he sent Dr. Law (physiatrist) with the news instead. Although Dr. Law doesn't operate, he is highly involved with SDR surgery, so he was sent in to talk with us (although we were welcome to wait to speak with Dr. Oakes if we wished).
The recommendation was for Sarah Kate to undergo what is called a Selective Dorsal Rhizotomy (SDR).So what is SDR, anyway? In a nutshell, they will go into her spinal cord and determine which nerves are "misfiring" and causing the spasticity. They will permanently cut the rootlets of those nerves, which will reduce the spasticity (and it should not ever return). The surgery will take 4-6 hours and she will be hospitalized for about 5 days. Following the surgery, she will have intensive physical therapy daily for about a year. Most functional gains that she will be able to achieve will occur within that first year. Although a wonderful benefit of the surgery is increased physical capabilities, just as important is the fact that reducing the spasticity will prevent a lot of problems in the future, such as physical deformities, that would require additional surgeries/treatments, and pain caused by the spasticity as she gets older. The ideal time period for this surgery is between 2-1/2 and 4 years of age, because after age 4, motor patterns in the brain are deeply ingrained and harder to change.
I was completely shocked at the recommendation. I had been reading a great deal about it in the months leading up to the appointment, and it sounded very promising, but I hadn't really been able to find anyone who knew of a child like Sarah Kate having been recommended for the surgery. Most people that I talked to only knew of more involved kids having the surgery. Of course, I have also found that Sarah Kate is unique. Her CP only affects her legs - she has no cognitive, speech, social, or fine motor delays, which is apparently pretty rare. She's also tough as nails and very driven - one of her therapists even said one day that she really does her own therapy. I had hoped in the back of my mind that she would be a candidate for SDR, but I just didn't think it would happen. I was shocked and thrilled and terrified. The recommendation was also unanimous, which is apparently pretty rare, as well.
Now the deliberation begins...
Smiling at God
I know I'm going to get the question, so I'll just go ahead and answer it first. Why is the blog titled "Smiling at God?" When Sarah Kate was born, she spent her first 53 days in the NICU. Although it's not a choice I would ever make, I did witness many small miracles during our "sneak preview." One of those was what Scott and I termed "smiling at God." Sarah Kate was a very calm preemie, which was not the case for many of the tiny miracles. She would lie in her isolette and just look around as if she was taking in every detail. Although the doctors told us that her facial expressions were caused by an immature neurological system and that her vision wasn't good enough for her to be able to see very far beyond her own face, we could never accept it completely. On many occasions, Sarah Kate would lie on her back, looking straight up, and just begin to smile. We believed that she was smiling at God, and throughout her young life God has been smiling back at her.
"And he said: "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven."
"And he said: "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven."
Matthew 18:3-4
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