Monday, February 25, 2013
Here we go...
Today was Anabelle's first Physical Therapy since she's gotten her braces (or as we call them her "Super Shoes"). The PT says that she is looking really good. Her stability is not very good and she is not standing on her own yet but she is taking to the braces much better than I had thought she would. I credit all of that to my faithful Lord and the many people praying for our baby. She is now on the road to recovery or at least some normalcy. The PT says she wants to work with Anabelle and a walker. She said that the walker wont be permanent but just a tool to get Anabelle used to walking in her braces. She has been using her legs in such a different way than the braces are making her use them. Today she did about 25 squats in her braces. By the end her poor legs were shaking they were so tired. Imagine never being a runner and then being forced to run a marathon and having someone distract you, stop you, trip you, and throw you off course. You would be exhausted, your muscles tired. You wouldn't have the breathing techniques in place or a pacing practice instilled, and any effort you gave it would only be counteracted by the person standing in front of you trying to bring you down. Anabelle has had zero practice using her legs the way her braces are forcing her to use them. Not to mention her brain is constantly fighting against her, because it has a completely different idea of what her muscles should be doing. The idea is that we are going to be able to retrain her brain. It is going to take a while but I know she will get there. After talking with the PT today I asked a question I almost didn't want to ask. "How long until I see my daughter walk on her own?" I didn't want to ask for a couple of reasons: One being that they would tell me that it will be years and that would just crush me. And second because I didn't want them to tell me that it was going to be a short amount of time and get my hopes up and be let down. But I figured she sees kids like Anabelle all the time, so I asked. She is pretty sure that as long as we keep up with her therapy even when she is home with us and keep her braces on full time, she will be walking on her own in a couple months!! WHAT?! I was so excited to hear that! After over a year of struggle with my daughters walking I see a great thing coming! She is going to be able to move on her own in only a few short months! I will of course do my best to keep everyone updated on her progress as we make it. Tomorrow is 2.5 hours (that she has to keep her braces on) and we will go from there. The hope is to get her to 8-10 hours a day with no sleeping or bathing in them. I will probably blog again when we reach a full day with Anabelle's braces on. Until then... thanks for being a part of this journey with us!
Friday, February 22, 2013
Catching Up 2/22/13
I'm not much of a blogger but I though what better way to record Anabelle's story than to blog and also keep everyone up to date on what she is up to.
So for those who don't know I will catch you up:
Anabelle was born Dec 11 2010 and she was perfect; her weight was great, she nursed well, and she had all of the qualities of a medically perfect baby. She hit all of her milestones at the right time if not sooner. She was sitting at 3 months, crawling at 6 months, pulling to stand at 7 months, and walking at one year. She was really wobbly and very slow when she started walking but it didn't seem that unusual since she was just learning how to walk. By 18 months she could only take about 5-10 steps and then would fall over, meanwhile other kids her age were running circles around her, literally. I started to realize something is definitely different about her. I talked to her pediatrician and she had never seen a child that walked that way. She was swinging her hips, locking her knees back with every step, and would keep her hand up by her face as she walked. The pediatrician decided to send Anabelle to the Pediatric Orthopedist in town because she thought it was a good place to start. In Aug 2012, we went to the Orthopedist, and he didn't have much to say. He told us that she had some weakness in her legs (didn't identify where) and that he wanted to see her again in 3 months. I was absolutely baffled! 3 months? She has been walking like this for 8 months. What are 3 more months going to do?! After talking with a lot of wise moms and grandmas they encouraged me to look for answers elsewhere. My Grandma gave me this coupon for Physical Therapy in town for a free evaluation. On November 13 we went to the physical therapist and she told us that Anabelle has tight heel cords and that she would most likely need AFO's (leg braces). Our insurance wasn't accepted by this particular PT office so the therapist referred us to Early Intervention, which is a state program for kids with disabilities, and is completely free of cost. We took Anabelle to EI on the 16th and they did a complete standardized evaluation on her. They tested her social, cognitive, fine motor (hands), and gross motor (legs) skills. She tested off the charts for everything but gross motor. The therapist there told me that Anabelle was "displaying all of the signs of a child with Cerebral Palsy. She is whats considered a "toe-walker" (a very common symptom in children with CP, especially the kind she has), but instead of walking on her toes, she hyper-extends her knees backwards to get her heels on the floor." The therapist told me that she couldn't make the official diagnosis and that I would have to have her Pediatrician make the official call. She also gave us the approval for Anabelle to qualify for free Physical Therapy provided by the state. We then had the diagnosis confirmed on Dec 29th with her new Pediatrician.
A little info on Cerebral Palsy:
Anabelle has what is called Spastic Diplegia Cerebral Palsy, which basically means that at some point during pregnancy or birth Anabelle did not have enough oxygen going to her brain and it damaged the part of her brain that controls what the muscles in her legs do. There are many symptoms and causes of Cerebral Palsy which makes it very hard to identify why Anabelle has it. Cerebral Palsy is incurable, but treatable. CP never gets worse; as in the damage to her brain never gets worse. However as she grows and her body gets heavier and her muscle and bone lengths grow, she will have to learn how to compensate for that. Now at 2 years old Anabelle is almost completely crawling because of this.
Back to the timeline...
The pediatrician wasn't happy that there are no real clear reasons why she should have CP. Often it is caused by prematurity or extreme lack of oxygen during birth. Anabelle didn't have either of those. So she has referred Anabelle to be seen by some Developmental Pediatricians from Doernbecher's Children's Hospital in Portland, just top make sure that it is CP and nothing else. They should be coming to Bend soon so we won't have to go there (it's about a 5 hour drive). Also Anabelle's Pediatrician put in a referral for her to get her AFO's (leg braces). And we starting seeing a Physical Therapist that takes our insurance at the hospital's rehab center. We got Anabelle fitted for her braces at the end of January this year and just received them today. She has been seeing a Physical Therapist at least once a week between EI, the Hospital, and Healing Bridge. She is also seeing an Occupational Therapist at the Hospital to help her with some of her fine motor movement. She does okay for the most part but there are certain things she should be doing with her hands and isn't. They call it "overflow". It is parts of her CP showing up in other areas of her body. She is responding really well to her PT and OT, but the braces will take time. We put them on today when we got home from the appointment and she screamed for the whole half hour she had them on, and tomorrow we are supposed to up it to one hour. And add half hour every day after that until she is wearing them all day, about 8-10 hours a day. It's going to be a long road to recovery but with God's patience, peace, and grace, I know we will get there.
I do presume that the next blogs will be shorter, but thanks for sticking around! I would be willing to answer any questions I can so feel free to ask. Also, we thank you all so much for your prayers and thoughts for our little one.
The Wilsons
A Picture of her Braces:
(I will try to get one with them on her next time... but with her being challenging it's the last thing on my mind)
So for those who don't know I will catch you up:
Anabelle was born Dec 11 2010 and she was perfect; her weight was great, she nursed well, and she had all of the qualities of a medically perfect baby. She hit all of her milestones at the right time if not sooner. She was sitting at 3 months, crawling at 6 months, pulling to stand at 7 months, and walking at one year. She was really wobbly and very slow when she started walking but it didn't seem that unusual since she was just learning how to walk. By 18 months she could only take about 5-10 steps and then would fall over, meanwhile other kids her age were running circles around her, literally. I started to realize something is definitely different about her. I talked to her pediatrician and she had never seen a child that walked that way. She was swinging her hips, locking her knees back with every step, and would keep her hand up by her face as she walked. The pediatrician decided to send Anabelle to the Pediatric Orthopedist in town because she thought it was a good place to start. In Aug 2012, we went to the Orthopedist, and he didn't have much to say. He told us that she had some weakness in her legs (didn't identify where) and that he wanted to see her again in 3 months. I was absolutely baffled! 3 months? She has been walking like this for 8 months. What are 3 more months going to do?! After talking with a lot of wise moms and grandmas they encouraged me to look for answers elsewhere. My Grandma gave me this coupon for Physical Therapy in town for a free evaluation. On November 13 we went to the physical therapist and she told us that Anabelle has tight heel cords and that she would most likely need AFO's (leg braces). Our insurance wasn't accepted by this particular PT office so the therapist referred us to Early Intervention, which is a state program for kids with disabilities, and is completely free of cost. We took Anabelle to EI on the 16th and they did a complete standardized evaluation on her. They tested her social, cognitive, fine motor (hands), and gross motor (legs) skills. She tested off the charts for everything but gross motor. The therapist there told me that Anabelle was "displaying all of the signs of a child with Cerebral Palsy. She is whats considered a "toe-walker" (a very common symptom in children with CP, especially the kind she has), but instead of walking on her toes, she hyper-extends her knees backwards to get her heels on the floor." The therapist told me that she couldn't make the official diagnosis and that I would have to have her Pediatrician make the official call. She also gave us the approval for Anabelle to qualify for free Physical Therapy provided by the state. We then had the diagnosis confirmed on Dec 29th with her new Pediatrician.
A little info on Cerebral Palsy:
Anabelle has what is called Spastic Diplegia Cerebral Palsy, which basically means that at some point during pregnancy or birth Anabelle did not have enough oxygen going to her brain and it damaged the part of her brain that controls what the muscles in her legs do. There are many symptoms and causes of Cerebral Palsy which makes it very hard to identify why Anabelle has it. Cerebral Palsy is incurable, but treatable. CP never gets worse; as in the damage to her brain never gets worse. However as she grows and her body gets heavier and her muscle and bone lengths grow, she will have to learn how to compensate for that. Now at 2 years old Anabelle is almost completely crawling because of this.
Back to the timeline...
The pediatrician wasn't happy that there are no real clear reasons why she should have CP. Often it is caused by prematurity or extreme lack of oxygen during birth. Anabelle didn't have either of those. So she has referred Anabelle to be seen by some Developmental Pediatricians from Doernbecher's Children's Hospital in Portland, just top make sure that it is CP and nothing else. They should be coming to Bend soon so we won't have to go there (it's about a 5 hour drive). Also Anabelle's Pediatrician put in a referral for her to get her AFO's (leg braces). And we starting seeing a Physical Therapist that takes our insurance at the hospital's rehab center. We got Anabelle fitted for her braces at the end of January this year and just received them today. She has been seeing a Physical Therapist at least once a week between EI, the Hospital, and Healing Bridge. She is also seeing an Occupational Therapist at the Hospital to help her with some of her fine motor movement. She does okay for the most part but there are certain things she should be doing with her hands and isn't. They call it "overflow". It is parts of her CP showing up in other areas of her body. She is responding really well to her PT and OT, but the braces will take time. We put them on today when we got home from the appointment and she screamed for the whole half hour she had them on, and tomorrow we are supposed to up it to one hour. And add half hour every day after that until she is wearing them all day, about 8-10 hours a day. It's going to be a long road to recovery but with God's patience, peace, and grace, I know we will get there.
I do presume that the next blogs will be shorter, but thanks for sticking around! I would be willing to answer any questions I can so feel free to ask. Also, we thank you all so much for your prayers and thoughts for our little one.
The Wilsons
A Picture of her Braces:
(I will try to get one with them on her next time... but with her being challenging it's the last thing on my mind)
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