Today I needed an emotional and mental day off from watching my hero suffer so I dropped him off with his favorite snacks, stress ball from Nana, pacies, backup pacies, and his favorite music CD. Speaking of music, that new Molly Montana song came on TV in the waiting room and Camden was captivated. I thought he was having one of those possible blank stare seizures, but really he was just listening and smiling to the song. I didn't really catch all of the words, but I do remember one part where she was talking about an uphill battle to climb, maybe it was fate. Move over Beyonce and Fergie, Camden has a new music crush.
So I finally arrived back at the therapy clinic a litle after 11. Camden was doing trunk support strengthening on an exercise ball and appeared unusually calm. He looked to have some fresh lipstick marks on his cheeks and dance music was blaring in the background. I wasn't going to ask because I guess what happens in therasuit therapy stays in therasuit therapy. He saw me and gave me the lip but then smiled after a quick hug.
While I was there he did some crawling exercises in the suit and then some walking drills with Ms. Valerie. He was doing great and they even had to tell him to slow down and concentrate on his steps. Camden was in a cheerful mood which gave me a chance to talk more with Ms. Tammy and Ms. Valarie about Camden's progress. They said to think of Camden's delays as a phone call. His body tries to connect with his brain for signals for movement and most of the time it gets a busy signal and every once in awhile it gets through or has to leave a message, hence his delayed motion or overuse of certain muscles. They said that he currently favors his adductors(leg muscles whose funtion is to move the leg in towards the centerline of the body) thus causing his legs to scissor and his feet to turn inwards. They would like for him to use the abductors(muscles that spread the legs apart)more to assist with correct forward standing motion. I knew he always kept his butt muscles tight, but I always thought that was for the ladies.
So this is just one of the many areas the suit and therapy are helping and he really does walk without scissoring in the suit. Becky and I need to work more on his range of motion at home and keeping his muscles loose and stretched. So all in all, today was much better. It appears as if Camden is beginning to trust his therapists and has accepted that hard work is the way to go. I think I will try and stay with him all day tomorrow since there is a family coming in with a child displaying similar symptoms to Camden that Ms. Tammy would like me to meet. Thanks again for the prayers and support, they are working!
Wednesday, July 22, 2009
Tuesday, July 21, 2009
If you aren't cryin' then you aren't tryin - Day 2
Apparantly this is the motto for what Camden has now coined "Terrorsuit therapy". The day started out well enough with his daily massage and flirtatious smile with all of the staff that he hoped would save him come work time. Unfortunately for Camden he failed to charm the right person as it was now time to put on the suit. I went out to grab something to eat and came back to find a wet eyed, rosey cheeked, lip touting bulldog. Little did I know that this would be the theme for the day.
The first exercise in the suit was to go from a sit to a stand position. Camden did great and was rewarded with extra jumping time on the bouncy pod. Next he did some abdominal work before the day went South. He had to go from a lying roll to a side sit. This is something he has done several times in PT with Lisa in Jacksonville but for some reason he wasn't having it today. After 5 reps on his left hand, Ms, Tammy had to take a break because Camden was crying so hard that he was having trouble breathing. Ms. Tammy said that the suit constricts every muscle, including his chest, and even breathing can be work. She was so good with him and finally got him to continue. Continue he did, screaming that is. By some miracle, or everyone's prayers, he made it through 10 reps with the right hand. Ms. Tammy rocked him after this and sang to him about how good he was doing and Camden promptly went to sleep. This is when I truly realized how hard he was working. I am so proud of you Camden!
We had to wake him up because he still had 2 1/2 hours left to go. We gave him a quick snack before moving to some more relaxing trunk control exercises. The he did some assisted walking to the fun room, Camden would probably disagree. In the fun room he was able to ride a mechanical horse named "Bert". Next he performed some vestibular(balance)work on a long swing and a covered swing. He was still crying at this point but moslty a tired cry. This was mild for what was in store.
The last group of exercises were in the monkey cage and gait training in a Kaye walker. Camden loved the monkey cage yesterday but turned into a gorilla today. He was literally growling at poor Ms. Val and she tried to do her best monster voice back to distract him. I think Camden won this battle as the cage was shortly deemed closed!
At this point it was 11:15 and he still had over an hour left. Ms. Valerie tried to take it easy on him but he was so exhausted and tired that his poor crying head just sunk in his chest while he tried to take steps. He had very little energy left to cry and couldn't even manage the lip. I almost had an emotional breakdown of my own as I questioned whether we were pushing him too hard and if he was ready for such an intensive workout. Ms. Tammy comforted me by saying that this was normal for Day 2 and that Camden was doing great for only averaging an hour of PT a week back home.
I agreed to continue but also agreed to not come back to the therapy room tommorrow as I really don't think I could handle seeing him cry again like he did today. So tomorrow's update will be mostly feedback from the therapists. I gave Camden a great big bear hug and sat with him for several minutes telling him how proud I was of his hard work. I put him in the car seat and drove off, he didn't last a whole block before I looked back and he was slunched over the side of the car seat. He was out.
I rewarded him with a trip to a friend's swimming pool after his 3 HOUR nap. He seems to be in great spirits now and the good news is that we can give him Motrin every night while he is in therapy. We also got permission to up his reflux medicine since he has been spitting up more lately from the abdominal stress. Thanks again for the great feedback and support. Hopefully Day 3 will be a breeze.
Monday, July 20, 2009
Therasuit Bootcamp Day 1
Today was the big moment, Camden's first day of Intensive therapy at Progressive Pediatric in Tallahassee. We started out the day exploring the new environment and all of their cool therapeutic toys. Thankfully, Becky was able to visit the clinic on Friday and meet the wonderful staff before having to return home yesterday.
Ms. Tammy and Ms. Valarie spent about 90 minutes evaluating Camden's muscle control, gait movement and overall abilities. Camden was then treated to a 15 minute heated weight massage topped off by a 3o minute full body lotion massage. Don't worry Mommy, there was no funny business.
After the relaxation came the hard part, the therasuit. The suit consists of a chest and shoulder strap that was connected to waist, leg and foot straps by small hooks and bungy cords. The suit was tightened in almost 20 different areas until Camden had perfect posture and a pissed off demeanor.(see pictures)It took around 15 minutes to put on since it was his first time, tomorrow should be faster. Ms. Tammy said that I could try on the adult suit one day to see just how difficult it is to move and to get a better idea of how hard Camden is working. We'll see, but hopefully no pictures of that event.
Camden was unusually calm while the suit was being put on, the same can not be said while the suit was being tightened and he began doing therapy in the suit. The first thing Ms. Tammy did with the suit on was to have Camden stand up with her assistance. It was truly amazing to see how tall our little man is when in the correct posture, brought a proud tear to Daddy's face, one of many more to come I am sure. Camden then began abdominal work on a bouncy pod for about 10 minutes. He did okay with this workout thanks to lots of songs and encouragement.
After a short break, and drool wipedown, it was back to work. Camden began working on lateral drills and moving from a sit to stand position. Later he worked on some upper body and head control exercises. Camden had average head control today so he barely escaped the wrath of the therasuit head support hat, but it's a day to day thing right now. Hopefully he doesn't have to wear the hat because he looks silly enough in the suit and there were some cute girls checking him out. He still has quite the rep to think about.
The last exercise in the suit was in the monkey cage. Here Camden was standing on his own with the help of bungy cords connecting his suit to the side of the cage. He performed some reaching and jumping drills and had amazing head control. Camden did so well about keeping his head up and never quit, even though he wanted to. He finished up the monkey cage with some knee sitting drills and then was finally free from the suit.
Ms. Tammy did some final streching and relaxation work with the suit off. She was in awe of his recipricol gait movement. Basically this means that camden was using the correct walking motion, but was actually trying to run, going 90 to nothing. He had the biggest smile as he tried to escape with his new found movements.
So Day 1 of his bootcamp is over, and was a great success. He was only in the suit for about 90 minutes today but will be in it from here on out for 3 hours a day. Camden was exhausted when we got home and is currently still napping(2 1/2 hours and counting). We are again so grateful for this opportunity and thank all of you for the prayers and support. Check back often as I will try to update every day, or at least every other day.
Tuesday, July 07, 2009
We want to share with you something huge Camden is about to endeavor. It's called Intensive therapy, utilizing the Therasuit method. Therasuit is one of the things we learned about at the special needs conference we attended last month. It's designed for many types of disorders, but especially for kids with CP. After getting a strong recommendation from his PT Lisa, we looked in to making it happen for Camden.
What it involves is 4 hours of therapy, 5 days a week for 3 weeks straight. Camden will be wearing a suit designed to provide lots of biofeedback. (See pic of girl modeling, although Camden will not be smiling in it!). The sessions will start with stretches and heat massage. Then, he'll put the suit on. The therapists are specially trained to use the suit and encorporate OT and PT (maybe even Speech?) into the sessions. They will push Camden, but are trained to know the kids' limits. It is the equivalent of cramming about a year and 1/2 of therapy into this 3 week "session". Camden will not like it one bit! This will be the hardest he's ever had to work and he will be exhausted at the end of each day. The payoff? A lot of kids have learned to walk with it. All have gained better gait and muscle movement.
Aside from a huge physical commitment from Camden, there's also the time commitment and financial commitment. We're blessed that Kevin has the summer off and has the time for this project. They don't offer Therasuit therapy in Jax, but Kevin found a clinic in Tallahassee called Progressive Pediatrics. Since Nana and Gramps live in Tally, they're graciously going to host Kevin and CamCam while there. I need to stay behind to work, but will be joining them on the weekends, and hopefully maybe a Friday or two. Financially, this therapy costs several thousands. My mom and dad have amazingly agreed to pay for this because they are anxious to see the results. It's their hope that once the benefits of the program are visible with Camden, it will help us to raise funds for Camden's next session. Our hope is to have him do 2-3 of these sessions. Most kids are not able to walk without a few under their belts.
Why are we telling you about it?
Probably more than anything else right now, we need your prayers! Camden will be starting this therapy on Monday July 20th and it will end Friday August 7th. (Cue "Eye of the Tiger"). As I mentioned, Camden will be mentally and physically challenged in a way he's never experienced.
--Pray for his determination and that he won't become too frustrated to work.
--Pray that he won't lose too much weight. We're expecting him to probably drop a pound or 2 and that's a lot for Camden. Weight gain has always been an issue for him and he will have the feeding tube consultation once he's back in Jax.
--Pray for Kevin's energy, patience and sanity! It's tough flying solo with Camden, although we're encouraged that he'll have Gramps and Nana to help him out at night. And you all know what an amazing Daddy Kevin is. He is even planning on taking Camden to a friends' pool for aquatherapy while there (on his off time!). And be sure to check the blog after the 20th...Kevin hopes to update the blog regularly!
Down the road there may be other opportunities to get involved (financially!) but right now, Camden needs the backing of an army of prayer warriors behind him. So please think of him next time you're talking to the Great Physician! :)
Thanks all for your love and support.
(for anyone wanting more info & whose eyeballs haven't popped out reading all this!)
more details about the TheraSuit, taken from www.suittherapy.com:
TheraSuit, thanks to its construction and improvements creates a breathable soft dynamic orthotic. Its major goal is to improve and change proprioception (pressure from the joints, ligaments, muscles), reduce patient's pathological reflexes, restore physiological muscle synergies (proper patterns of movement) and load the entire body with weight (process similar to a reaction of our muscles to the gravitational forces acting up us for 24 hours). All of the above normalizes afferent vestibulo-proprioceptive input (information arriving to the vestibular system). The vestibular system is a very important center. It processes, integrates and sends back all the information that arrives from muscles, joints, tendons etc. It influences muscle tone, balance and the position of the body in space.
The more correct proprioception from the joints, ligaments, muscles, tendons, joint's capsule etc., the more correct alignment. The vicious cycle can be interrupted and incorrect information is replaced by " new" correct information. A patient (child) diagnosed with Cerebral Palsy and other neuro-motor disorders requires hundreds of repetitions of any particular movement. We believe that as individuals, we all have a "magic" number. For example: a baby that is trying to push-off the floor will need to repeat this movement a few hundred times in order to master it. Another one may need either more or less repetitions to learn the same skill. For the Cerebral Palsied child however, this fairly low "magic" number grows to a thousand or more repetitions to learn and master new skills. TheraSuit worn over a prolonged time will correct proprioception and accelerate the progress. Thanks to the TheraSuit and physical movement (therapy) the skills practiced will become more fluent and require less and less effort. Therefore, TheraSuit facilitates the development of new gross and fine motor skills like sitting, standing, walking.
Indications:
Cerebral Palsy
Developmental delays
Traumatic Brain Injury
Post stroke (CVA)
Ataxia
Athetosis
Spasticity (increased muscle tone)
Hypotonia (low muscle tone)
Contraindications:
hip subluxation greater than 50%
severe scoliosis
TheraSuit consists of :
cap
vest
shorts
knee pads
arm attachments - new - (available in 2009)
shoe attachments
All the mentioned above elements of the suit are
connected with each other through a system of
elastic bands.
Benefits:
Re-trains central nervous system
Restores ontogenic development
Provides external stabilization
Normalizes muscle tone
Aligns the body to as close to normal as possible
Provides dynamic correction
Normalizes (corrects) gait pattern
Provides tactile stimulation
Influences the vestibular system
Improves balance
Improves coordination
Decreases uncontrolled movements in ataxia and athetosis
Improves body and spatial awareness
Supports weak muscles
Provides resistance to strong muscles to further enhance strengthening
Improves speech production and its fluency through head control and trunk support
Promotes development of both fine and gross motor skills
Improves bone density
Helps to decrease contractures
Helps improve hip alignment through vertical loading over the hip joint
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