Last week was incredible for Jace. By Tuesday, he got through an entire day with no tears, continued to hold his head up (a difficult task for him); and Wednesday, Dad got to see him in the hart walker. It was fantastic, the first time his PT got to witness the side of Jace that most of the family witnesses, his giggly goofy side. Friday brought a tremendous surprise: he finally took steps with his left leg, was in a great mood and was honestly quite the trooper for the end of the week workout.
Good news for his future: we snagged our next round of intensive in November and will be continue on a weekly basis in addition to his schedule I will have for him at home. He really loves his hands being "crossed over, straighten them out" and than tucking his knees up to his chin, we do this 10 times and he giggles with every time.
Hopefully, I will get his hair cut this week (a challenge in itself)...he really had the "Edward" look going but when his sister put his hair up in a pony tail with a silver barrette, it was my wake up call to make him look more like a little boy...wish me luck with that!
Our goal this week is to capture on film, reciprocal steps in the hart walker, he is very close to this goal.
"As a parent of a child with special needs we need to enjoy our kids for who they are not for who they could have been"
July 25, 2010
July 18, 2010
To sum it up...
To sum up our first week of intensive, in a word, great!!!! It is such a joy to see Jace loving to be in a standing position and to understand that in cannon ball position helps him to not thrust himself backwards, and after one week it showed! Definitely, his body is seeming to be more calm, less hyper with out of control motions.
Our goal this next week is to see him pick up his left foot in the hart walker. He has successfully picked up and moved his right foot forward, but not at all on Friday. It has been a long week for him, he is not used to this much activity in one week.
Jace has fallen asleep "on the job" on just about every day, something he does at preschool as well. Friday, he was wiped, so we'll probably see an adjustment to an earlier lunch break for him this next week, which will break up more of his mornings and give him a longer afternoon of work.
Our goal this next week is to see him pick up his left foot in the hart walker. He has successfully picked up and moved his right foot forward, but not at all on Friday. It has been a long week for him, he is not used to this much activity in one week.
Jace has fallen asleep "on the job" on just about every day, something he does at preschool as well. Friday, he was wiped, so we'll probably see an adjustment to an earlier lunch break for him this next week, which will break up more of his mornings and give him a longer afternoon of work.
July 13, 2010
Day 2 of intensive
Day 2 brought on a much happier boy. We started our morning with heat packs to warm up his muscles. He arrived to intensive in a okay mood, but once in the stander he was quite content. He did not need mommy to hold his hand, it was all about checking out his own.
Next he was on the table, disliking his massage and compression exercises. This surprised me but I think he really wanted to stay standing for a bit longer.
On with the benik and walking in the hart walker, which was a tearful experience. He was fighting doing the work but it's only day 2 and I am still stoked from seeing such a happy boy standing up, with a bit less support than day 1. I swung him on the platform for a bit while his therapist got the therasuit ready for him.
He smiled so big and cute during his strengthening, he loved it today! After his leg and arm strengthening, we made our way to the flat table and he did massive sit ups (90) and used the peanut ball to do some more (another 90 with arms out and behind him)...some rolling and some sitting, he loved sitting but still fell backwards when he brought his head up...but its an amazing start!
He had a good 30 minute lunch break with me, part of which he lent sympathy tears to the girls who were disliking doing their work out...
The last part of our day was more stretching and finally cannon ball position...he fell asleep the entire duration of cannon ball...and after being home for a bit he has not napped a full nap yet, I am hopeful for an early bed time...
Looking forward to tomorrow!
Next he was on the table, disliking his massage and compression exercises. This surprised me but I think he really wanted to stay standing for a bit longer.
On with the benik and walking in the hart walker, which was a tearful experience. He was fighting doing the work but it's only day 2 and I am still stoked from seeing such a happy boy standing up, with a bit less support than day 1. I swung him on the platform for a bit while his therapist got the therasuit ready for him.
He smiled so big and cute during his strengthening, he loved it today! After his leg and arm strengthening, we made our way to the flat table and he did massive sit ups (90) and used the peanut ball to do some more (another 90 with arms out and behind him)...some rolling and some sitting, he loved sitting but still fell backwards when he brought his head up...but its an amazing start!
He had a good 30 minute lunch break with me, part of which he lent sympathy tears to the girls who were disliking doing their work out...
The last part of our day was more stretching and finally cannon ball position...he fell asleep the entire duration of cannon ball...and after being home for a bit he has not napped a full nap yet, I am hopeful for an early bed time...
Looking forward to tomorrow!
July 12, 2010
Intensive Therapy
Day one of intensive therapy:
After a good 17 months of a waiting list for intensive therapy, we snuck into another program without much wait at all, I think it was just a lucky timing break on our part with another therapist being hired on.
Completely worth the wait!
He started with the stander, 30 minutes while watching Elmo. He just got his new AFO's (his 2nd pair ever) and he was put in a suit called a Benik. The Benik is a lot like his spio. Love it!
I was thrilled he lasted for 30 minutes, his record is 25, so we are off to a good start. As a reward, we put him on the platform swing...but he was just not having it, unless his feet hit the ground and he could push him self around. I think I have spoiled him with his "mommy swings".
Next, we hit the hart walker, something he is familiar with but wasn't happy about. The hart walker he only went about 20 minutes in, we want him happy in it after all!
Afterwards, he went into a therasuit (I am providing a link that is more expert than I on this):
http://www.suittherapy.com/therasuit%20info.htm
He was in this suit for 2 and half hours, doing all kinds of exercises that will help with strengthening. The last 20 minutes of this he zonked out, out cold, during sit ups. He hit 7 and had 23 more to go. It's amazing how a cold compress will wake you back up!
His 30 minute lunch break resulted in downtime in which I just sang to him and talked softly. Had to keep him from falling asleep.
For his last hour and a half, he was out of his therasuit and being stretched. His final exercise of the day was called "cannon ball". It was, literally! He pretty much could not move during his last 30 minutes but calmed down when he discovered he could not wiggle out.
A long nap of nearly 3 hours resulted after we made it home, can't wait to see what he does tomorrow!
After a good 17 months of a waiting list for intensive therapy, we snuck into another program without much wait at all, I think it was just a lucky timing break on our part with another therapist being hired on.
Completely worth the wait!
He started with the stander, 30 minutes while watching Elmo. He just got his new AFO's (his 2nd pair ever) and he was put in a suit called a Benik. The Benik is a lot like his spio. Love it!
I was thrilled he lasted for 30 minutes, his record is 25, so we are off to a good start. As a reward, we put him on the platform swing...but he was just not having it, unless his feet hit the ground and he could push him self around. I think I have spoiled him with his "mommy swings".
Next, we hit the hart walker, something he is familiar with but wasn't happy about. The hart walker he only went about 20 minutes in, we want him happy in it after all!
Afterwards, he went into a therasuit (I am providing a link that is more expert than I on this):
http://www.suittherapy.com/therasuit%20info.htm
He was in this suit for 2 and half hours, doing all kinds of exercises that will help with strengthening. The last 20 minutes of this he zonked out, out cold, during sit ups. He hit 7 and had 23 more to go. It's amazing how a cold compress will wake you back up!
His 30 minute lunch break resulted in downtime in which I just sang to him and talked softly. Had to keep him from falling asleep.
For his last hour and a half, he was out of his therasuit and being stretched. His final exercise of the day was called "cannon ball". It was, literally! He pretty much could not move during his last 30 minutes but calmed down when he discovered he could not wiggle out.
A long nap of nearly 3 hours resulted after we made it home, can't wait to see what he does tomorrow!
About Jace
Jace was born at 15 weeks early, weighing in at just 1 pound, 11 ounces. We are lucky to have him! He was diagnosed early on at our request with athetoid cerebral palsy. Regardless of diagnosis, he is a very happy boy, he brings joy wherever he goes. He went through 3 laser eye surgeries and is also diagnosed with CVI, or cortical visual impairment. In simpler terms, he has optic nerve damage, images that he sees are distorted. Imagine uploading pictures to your computer, but not having the software for your computer to recognize the images, that is the simplest explanation I received from his eye doctor.
Thankfully, early intervention came into his life just a few months after his release from the NICU. We were blessed with an amazing team of therapists who worked with us weekly, and with Jace that meant, occupational therapy twice a week, physical therapy once a week, speech therapy once every other week and vision therapy once a month.
The easiest way to describe him would be to view this link, it is the best description I have found:
http://www.indianchild.com/CerebralPalsy/athetoid-cerebral-palsy.htm
The Athetoid child is probably more intelligent than even an average, normal child, leave alone children with other forms of CP. But, he has difficulty scratching his nose, or holding a toothbrush or a pen. He really needs to concentrate hard on muscle coordination to make them obey his command. His face contorts and grimaces in ugly movements that he has no control over. Drooling is a very typical symptom.
Constant writhing movements of the limbs, especially the legs, gives him the appearance of a ‘dancer’. Unfortunately, it is only an appearance. His feet are unable to bear his weight and he keeps pulling them up. The knees bend inwards, touching each other making it extremely difficult for him to be upright, to sit or to walk. In treating patients with Athetoid CP, the focus is on helping the child to regain his centre of gravity.
The Basal Ganglia in the midbrain are specialized structures, which help maintain posture and automatic movements like the swing of the arms while walking. In Athetoid CP (also called Dyskinetic CP), it’s these Basal Ganglia, which are damaged causing fluctuations in the muscle tone throughout the body. The muscle tone is a mix of high and low i.e. it is sometimes too tight and sometimes too loose and weak. The changeover from high to low is completely unpredictable, making the movements of the entire body uncontrolled and involuntary.
This makes it very frustrating for both the child and his parents, because his intelligence wants him to do some simple tasks at least, but the body refuses. Some experts attribute this damage to Basal Ganglia, to increased levels of bilirubin in the child from infections and blood incompatibility between the mother and her child.
Athetoid CP gets aggravated when the stress levels are high, but almost disappears when the child is asleep.
The parents need a great deal of patience and determination to cope with their child’s stress when he is unable to touch, feel and learn like any other child. They need to keep up his sagging interest, and encourage him along his slow progress. Such children respond well to stress reducing activities, and to cooler climates as their bodies are forever warmed up because of the constant involuntary movement of their body.
In addition to physical and Speech therapy, Yoga and Martial Arts (with perseverance) have been found to be very effective in improving their muscle tone and coordination.
That being explained...to me, he is just Jace...an incredibly happy boy who I can just look at end any of my worries melt away.
Thankfully, early intervention came into his life just a few months after his release from the NICU. We were blessed with an amazing team of therapists who worked with us weekly, and with Jace that meant, occupational therapy twice a week, physical therapy once a week, speech therapy once every other week and vision therapy once a month.
The easiest way to describe him would be to view this link, it is the best description I have found:
http://www.indianchild.com/CerebralPalsy/athetoid-cerebral-palsy.htm
What is athetoid cerebral palsy ?
The mind is keen but the body is not! Unlike Spastic CP, the Athetoid CP is marked by a movement disorder of muscles, which are too loose, giving the child no vertical stability. His whole body is affected. The Athetoid child is probably more intelligent than even an average, normal child, leave alone children with other forms of CP. But, he has difficulty scratching his nose, or holding a toothbrush or a pen. He really needs to concentrate hard on muscle coordination to make them obey his command. His face contorts and grimaces in ugly movements that he has no control over. Drooling is a very typical symptom.
Constant writhing movements of the limbs, especially the legs, gives him the appearance of a ‘dancer’. Unfortunately, it is only an appearance. His feet are unable to bear his weight and he keeps pulling them up. The knees bend inwards, touching each other making it extremely difficult for him to be upright, to sit or to walk. In treating patients with Athetoid CP, the focus is on helping the child to regain his centre of gravity.
The Basal Ganglia in the midbrain are specialized structures, which help maintain posture and automatic movements like the swing of the arms while walking. In Athetoid CP (also called Dyskinetic CP), it’s these Basal Ganglia, which are damaged causing fluctuations in the muscle tone throughout the body. The muscle tone is a mix of high and low i.e. it is sometimes too tight and sometimes too loose and weak. The changeover from high to low is completely unpredictable, making the movements of the entire body uncontrolled and involuntary.
This makes it very frustrating for both the child and his parents, because his intelligence wants him to do some simple tasks at least, but the body refuses. Some experts attribute this damage to Basal Ganglia, to increased levels of bilirubin in the child from infections and blood incompatibility between the mother and her child.
Athetoid CP gets aggravated when the stress levels are high, but almost disappears when the child is asleep.
The parents need a great deal of patience and determination to cope with their child’s stress when he is unable to touch, feel and learn like any other child. They need to keep up his sagging interest, and encourage him along his slow progress. Such children respond well to stress reducing activities, and to cooler climates as their bodies are forever warmed up because of the constant involuntary movement of their body.
In addition to physical and Speech therapy, Yoga and Martial Arts (with perseverance) have been found to be very effective in improving their muscle tone and coordination.
That being explained...to me, he is just Jace...an incredibly happy boy who I can just look at end any of my worries melt away.
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