She tried to put Haley's shoe on her foot!!!! This is so cute!
This blog is for parents of special needs kiddos. I share life hacks and products that have made my girls life so much better. Cerebral Palsy Mom
Wednesday, April 4, 2012
Some current abilities
She has recognized and tried to say "kit cat" for awhile now. She has also been able to clap and give kisses for awhile as well. Some things that she can do now include brushes her hair (tries) haha. She also puts things in and out of a small purse which forces her to use both hands!
She tried to put Haley's shoe on her foot!!!! This is so cute!
She tried to put Haley's shoe on her foot!!!! This is so cute!
CP study
One of the things I have been so very blessed to be a part of is a CP study. This study provides physical and occupational therapies FIVE days a week. This is huge as typical treatment approval covers maybe once a week sometimes every other week. In China, when a child is diagnosed with CP, both mom and child are hospitalized and undergo twelve weeks of this therapy. This study is going to look at two things. Can parents here in the states even do this and get their child there every day? and is it effective? How much progress do they make and how much do they retain after the study ends? She is in her fourth week and is doing quite well.
How she started out
At the beginning of therapy,during her evaluations, she had a very short attention span and immediately threw any toy placed in her hand. She had trouble sitting up straight and her lower back practically touched the floor. Her crawl is atypical meaning she sort of leads with one leg and scoots the other up to her only bearing weight on one side. Most of her actions favored her left side and her grasp was wide (not pincer grasp). Her ankles are very stiff and have a very hard time staying flat.
She progressed rather quickly and now her sitting position is much straighter, and she can kneel , and play with toys for longer periods of time. She has started to put blocks into buckets and within the first week she was handing blocks to me.
Although she is making progress, there is still a dismal prognosis and growth has slowed dramatically in height and head circumference.
The Hyperbaric treatment she needs is expected to produce the miraculous results that she truly needs.
How she started out
At the beginning of therapy,during her evaluations, she had a very short attention span and immediately threw any toy placed in her hand. She had trouble sitting up straight and her lower back practically touched the floor. Her crawl is atypical meaning she sort of leads with one leg and scoots the other up to her only bearing weight on one side. Most of her actions favored her left side and her grasp was wide (not pincer grasp). Her ankles are very stiff and have a very hard time staying flat.
She progressed rather quickly and now her sitting position is much straighter, and she can kneel , and play with toys for longer periods of time. She has started to put blocks into buckets and within the first week she was handing blocks to me.
Although she is making progress, there is still a dismal prognosis and growth has slowed dramatically in height and head circumference.
The Hyperbaric treatment she needs is expected to produce the miraculous results that she truly needs.
Tuesday, April 3, 2012
Hope for Sienna
So as well as giving her nutrients to encourage brain growth, I have found after much research an innovative therapy called Hyperbaric Oxygen Therapy which has shown wonderful, positive results for children with everything from autism to brain injury. I found a place with a caring, experienced staff and am looking forward to getting Sienna in for treatment.
The lovely thing I am discovering about mainstream medicine and insurance is that they barely want to pay for their own physicians let alone something considered to be "experimental".
Of course, I am not letting any of that stop me from doing what I feel and know in my heart is right for Sienna. The parent testimonials are amazing, and I can hardly wait to see how Sienna progresses in what may be her only hope for a prolonged life! (Children with Microcephaly have a sad prognosis as I mentioned before.) I have linked to info on these things. Feel free to look into it. <3
The lovely thing I am discovering about mainstream medicine and insurance is that they barely want to pay for their own physicians let alone something considered to be "experimental".
Of course, I am not letting any of that stop me from doing what I feel and know in my heart is right for Sienna. The parent testimonials are amazing, and I can hardly wait to see how Sienna progresses in what may be her only hope for a prolonged life! (Children with Microcephaly have a sad prognosis as I mentioned before.) I have linked to info on these things. Feel free to look into it. <3
Monday, April 2, 2012
Introducing Sienna
Sienna is one of three wonderful children. Her older siblings couldn't be more thoughtful, helpful, and loving. Sienna loves to play with doors, kleenex, phones, some toys, and anything she isn't supposed to as with most babies! Haha She is happy, smart, and well, the light of our lives.
The Beginning
Shortly before her first birthday, the pediatrician began telling me to really work with her because she should be starting to stand/crawl/etc. At this point, I believed she was having trouble because of her weight. (My little chunky monkey!) (Before I continue, there are two pediatricians at the practice I take the children to. The one who saw her most of the time did not notice anything out of the ordinary. At six months, the second one saw her for the first time and referred her for an x-ray to check for Craniosynostosis due to small head size which came back negative. She then saw the other one again afterwards.) However, I began to notice her legs tremor and when held to stand, she could not get her feet flat and would automatically bend at the waist or lean far forward for support. Her muscles were very tight and suddenly concern grew. After a three month battle to re-instate insurance, she was seen by the second pediatrician who is now the only one I will take her to, and was referred to a neurologist.
Early Signs
Later on in this process, I realized that when her head size dropped from the 50th% at birth to the 20th% two weeks later and continued to decline, her pediatrician should have had red flags waving in his eyes. Because they were not, and how would I know?? she had to wait much longer than was necessary for treatment, diagnosis, and so on. I feel this is important because parents have to be extra diligent to avoid this.
What The Doctors Say
So after her MRI, the neurologist came in and basically drew me a crude picture of the brain and said simply, "She has Cerebral Palsy. Fairly severe. Certainly unexpected, here is a referral for some genetics testing. See you in a few months." Being hyperdiligent at this point, I requested all records from everyone, everywhere and began my own research. The long extravagant medical terminology found in the records and google became my only source of information. Countless hours have been spent researching studies, health information, therapies, and any and everything related to her condition. I even looked at her MRI images and compared them to pics online for reference...
The Reality
Although her condition seems dismal, the most concerning issue is the small head size also known as Microcephaly. This is when the head size is more than two standard deviations below the average head size for a child her age. In her case it is secondary and caused by the brain's failure to grow as expected. I however am on a mission to change that and feel progress is being made. The burning question of wether or not there is still room for her brain to grow, has been one that the doctors are making very difficult to answer. That is an entirely different can of worms...and will be saved for another time.
Parents-YOU are your child's ONLY and BEST advocate. Do NOT stop asking questions and never take no, can't, or impossible for answers. Nothing is impossible. Anything IS possible.
The Beginning
Shortly before her first birthday, the pediatrician began telling me to really work with her because she should be starting to stand/crawl/etc. At this point, I believed she was having trouble because of her weight. (My little chunky monkey!) (Before I continue, there are two pediatricians at the practice I take the children to. The one who saw her most of the time did not notice anything out of the ordinary. At six months, the second one saw her for the first time and referred her for an x-ray to check for Craniosynostosis due to small head size which came back negative. She then saw the other one again afterwards.) However, I began to notice her legs tremor and when held to stand, she could not get her feet flat and would automatically bend at the waist or lean far forward for support. Her muscles were very tight and suddenly concern grew. After a three month battle to re-instate insurance, she was seen by the second pediatrician who is now the only one I will take her to, and was referred to a neurologist.
Early Signs
Later on in this process, I realized that when her head size dropped from the 50th% at birth to the 20th% two weeks later and continued to decline, her pediatrician should have had red flags waving in his eyes. Because they were not, and how would I know?? she had to wait much longer than was necessary for treatment, diagnosis, and so on. I feel this is important because parents have to be extra diligent to avoid this.
What The Doctors Say
So after her MRI, the neurologist came in and basically drew me a crude picture of the brain and said simply, "She has Cerebral Palsy. Fairly severe. Certainly unexpected, here is a referral for some genetics testing. See you in a few months." Being hyperdiligent at this point, I requested all records from everyone, everywhere and began my own research. The long extravagant medical terminology found in the records and google became my only source of information. Countless hours have been spent researching studies, health information, therapies, and any and everything related to her condition. I even looked at her MRI images and compared them to pics online for reference...
The Reality
Although her condition seems dismal, the most concerning issue is the small head size also known as Microcephaly. This is when the head size is more than two standard deviations below the average head size for a child her age. In her case it is secondary and caused by the brain's failure to grow as expected. I however am on a mission to change that and feel progress is being made. The burning question of wether or not there is still room for her brain to grow, has been one that the doctors are making very difficult to answer. That is an entirely different can of worms...and will be saved for another time.
Parents-YOU are your child's ONLY and BEST advocate. Do NOT stop asking questions and never take no, can't, or impossible for answers. Nothing is impossible. Anything IS possible.
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