Friday, July 31, 2009
Thank God It's Friday - Day 10
Camden woke up in a much better mood today and was once again treated to some wonderful homeade Nana cooking, this time it stayed in his stomach instead of all over Daddy and Ms. Tammy. I am so glad Camden felt better today because he had a very special visitor, Ms. Debbie, his physical therapist from his developmental day care in Jacksonville.
Ms. Debbie arrived just in time to see Camden put on his superhero suit, minus the mind reading hat. Ms. Tammy felt like Camden's extra efforts to hold his head up on his own warranted some time off from the helmet. Ms. Debbie was amazed to see how big and tall Camden stood in his suit. Camden showed off with some no handed sit ups followed by a string of log rolls. Everything was fine until it was time to crawl, or as Camden misinterpreted as time to bawl. Camden has cleverly figured out that motioning his hands to his lips means "drink" and with it comes a 5 minute break from therapy. Today however he didn't want to drink when he touched his lips, he just wanted to stop crawling. After Ms. Tammy figured out that she had been duped it was back on the mat for more crawling and bawling. This lasted for 10 more minutes unitl Ms. Beth came to Camden's rescue with her guitar.
Camden and I were lucky to have Ms. Debbie stay with us for the rest of the morning session. She was so proud of Camden's efforts and anxious to try out some new routines when he returns to Jacksonville. Camden worked on some new drills in the spider cage and finally tolerated all of the bungy cords. We were also able to see some amazing progress in his sit to stand drills. I will try to post some video tonight of him doing this drill from Monday and a second video of his progress from today. Mommy is on her way to Tallahassee this afternoon and we both can't wait to see her. Thanks again for cheering our little guy on and check back next week for his final 5 days.
Thursday, July 30, 2009
Puke of Earl - Day 9
This morning at home started out great which should have been an omen for things to come. Nana got up early to cook Camden his favorite cheese grits and sausage. After that he had about 2 pieces of cinnamon toast with extra butter and sugar,yumm,yumm. Camden was now loaded down with added calories and energy and ready for whatever Ms. Tammy could throw at him, or so we thought.
Something seemed off from the moment Camden was loaded in the suit and began to work on his abs. He did good with the first set but then just didn't seem interested in his rewarded bouncy time. After his next set of abs he began screaming, moreso than his normal angry, I don't want to work, mode. Ms. Tammy felt like his hips were bothering him from the extra work yesterday and sent me home to get him some Motrin.
I gave Camden some much needed pain relief and then he happily worked on "Bert". It appeared as if Camden was back to normal until it started raining, from Camden's mouth that is. He couldn't seem to keep anything down and therapy was interrupted every few minutes for a water break and clean up. Camden finally started to have a better mood and seemed to get a kick out of us dodging his breakfast.
His tummy eventually got settled and he did some of his best walking yet in the monkey cage. I think the problem may have been that I gave him his nightime medicine last night on a full stomach and combine that with overworked abs and a delicious morning feast. Hopefully he will feel better after his nap and be ready for tomorrow's big day. He has a special day planned as his physical therapist from his day care in Jacksonville is stopping by to watch him in action and give him some more spoiled time.
Something seemed off from the moment Camden was loaded in the suit and began to work on his abs. He did good with the first set but then just didn't seem interested in his rewarded bouncy time. After his next set of abs he began screaming, moreso than his normal angry, I don't want to work, mode. Ms. Tammy felt like his hips were bothering him from the extra work yesterday and sent me home to get him some Motrin.
I gave Camden some much needed pain relief and then he happily worked on "Bert". It appeared as if Camden was back to normal until it started raining, from Camden's mouth that is. He couldn't seem to keep anything down and therapy was interrupted every few minutes for a water break and clean up. Camden finally started to have a better mood and seemed to get a kick out of us dodging his breakfast.
His tummy eventually got settled and he did some of his best walking yet in the monkey cage. I think the problem may have been that I gave him his nightime medicine last night on a full stomach and combine that with overworked abs and a delicious morning feast. Hopefully he will feel better after his nap and be ready for tomorrow's big day. He has a special day planned as his physical therapist from his day care in Jacksonville is stopping by to watch him in action and give him some more spoiled time.
Wednesday, July 29, 2009
Head Games - Day 8
Camden has managed to make it 7 days without the head support helmet, unfortunately, he was not so lucky today. He started out fine with his ab work and knee bends but seemed to have a difficult time keeping his head up for his sit to stand drills. We suspected this day might be coming and I just hope he can one day forgive me for the pictures. We will just chalk up the head control problems to his unordinarily large and heavy brain.
So now it was on to some new drills with his new and improved superhero head gear. He did great with his second round of sit to stand drills and Daddy could finally see those beautiful blue eyes. He continues to struggle with the walking exercises as the suit makes it extra difficult to bend his knees and lift his feet. I am so proud of him for not quitting although there is no way Ms. Tammy was going to let him off the hook. He finished the morning session with some balance lessons on "Bert" the mechanical horse. Don't tell Mom, but Ms. Tammy let Camden stand up on "Bert" and he loved it.
He completed the day in the monkey cage and took his first flying lessons(see pictures above). This was hard on him because it put a lot of pressure on his back muscles but he seemed to enjoy the freedom. Camden is now a cape away from his superhero license. I forgot to mention that I had a chance to wear the adult suit last week and it was quite the experience. I felt like I could not bend down at all and it was freaking me out to have such straight posture. Breathing was extra work because my body was fighting the constriction. I was proud to say that I lasted 30 minutes and am still in awe that Camden can go 3 hours.
Camden has officially reached the halfway point and we are optimistic about the long term results. We naively thought he may be sitting up by now but we never realized how many things have to happen simultaneously for such a simple act that we all take for granted to occur. Camden may do a good job of putting his hands out but then his legs will stiffen up. Then he may get his legs bent but his trunk and back will collapse. This is why it is so important for him to strenghten all of his muscles while at the same time practicing over and over a certain simple move. What may take a typical kid several hundred times to master, will take a kid with CP or a neurological disorder tens of thousands times to master. The suit is speeding up this process by helping to train Camden's brain to know what it should feel like to complete a correct action while at the same time strengthening the muscles that it takes to perform that task. Like Ms. Tammy says, you have to first lay the tracks for the brain train to roll. We are very encouraged by Camden's added energy and new movements with the suit off and we can't wait for Ms. Lisa to see what new things he can do in therapy. Sorry Lisa but he hasn't lost his manipulative outbreaks. Thanks again for the support and prayers.
Tuesday, July 28, 2009
For the Boys - Day 7
Today was back to just Camden and Daddy. It was so nice having Becky here for the past 5 days, emotionally and physically, and I am glad that she had an opportunity to watch our big man in action. We can't wait for you to come back again this weekend.
Camden started the day with his normal routine and then continued working his quads and upper body. He still fights the roll to sit exercises but I caught him doing it by himself after therapy yesterday, even though he tried to deny it. I think where we are seeing the most progress right now is in his activities at home. He is really doing a great job of using both knees to move and is all over the place in his bed. We used to put him down at night and he would be in the same position in the morning, now he is either facing the different direction or sideways with his feet up on his siderail. Help. I think we have created a monster in the bed.
After his morning break, he practiced walking while holding on and pushing a cart, sorry for no pictures but he was too fussy. He then worked on knee crawling with Ms. Tammy and Ms. Amber's help. After Daddy was sent out due to fussiness, Camden worked on more rolling to sits. Right now the only way Camden will be able to sit up by himself is if he gets there by rolling over and then pushing up on his arms. He hates this exercise but it is so important and the reason Ms. Tammy makes him do so many reps. Camden did so much rolling today that nightclub Ravers everywhere will be jealous.
I spent a lot of time today in the waiting room due to bad behavior, mostly Daddy's, and I can not get over how friendly and supportive the other familes have been to Camden and I. Everyone is so hospitable and open to talking about their children and the difficult and rewarding aspects of having a child with special needs. Most of the kids come in and hug one another and the parents can't talk enough about how wonderful Ms. Tammy and the staff are for their kids. They have such a supportive special needs community here and it is something Becky and I feel we have been unable to find in Jacksonville. I had one parent ask if there was anything she and her family could do to make our stay in Tallahassee better and another parent who is talking to her child's communication therapist today about possible services for Camden in Jacksonville. All in all we are blessed to be here and so very thankful for all who have helped make it a reality. Check back tomorrow as Camden is attempting a few new drills in the cage.
Monday, July 27, 2009
Intensive Therapy Day 6
He had a nice relaxing weekend to recoop, but this morning it was time for young Camden Bailey to get back to work. Things started out the same way...weights, message, putting on the TheraSuit. But when Camden began to cry during Ms. Tammy's foot message, I wanted more info about it. For any of you Amazing Race fans last year, remember the painful foot message they had to get on one leg of the China race? Ms. Tammy said that many of the techniques from the foot message she gives him are indeed Chinese and she gave me a taste of it. True, it was very painful, but she had me do the same toe-touch before and after message and it was interesting to see how much more I could bend over afterwards. (Well, I was still handicapped with a large baby belly!). Today after his side sit-ups, Ms. Tammy put him on a mat and had him do sit sit-ups into sitting on the edge of the mat. It was incredible to see him holding himself up for a few seconds! She also put him back into the "cage" with the harness on so he could practice some walking with the full suit on plus weights. He didn't cry at all! Oh sure, some fussing here and there, but no meltdowns. Then she had him work on sitting to standing and kneeling to standing and that wasn't so easy for him. He rode on Bert, did some surfing and was rewarded with some time in the ricebox. (Which we've decided we soooo have to have at our own house!) Camden just woke up from his 1 & 1/2 hour nap, brought on by such good hard work. We're going to go get some lunch and I'll probably be leaving sometime later this evening. Continued thanks to all for your thoughts, prayers and support and (if you're reading this Mark, Jim and Family Promisers) thanks for sharing me so much with my family. It meant so much for me to be here for both Camden and Kevin--you have no idea!
Saturday, July 25, 2009
CamCam's turn at the blog - Day 5
Mommy's here now!! It was good to see her, but she seemed a little drunk on something when she first saw me. I was just showing off my improved head control and she kept wanting to kiss me all over and snuggle with me and make me rub her belly to "say hello to Luke!" Whatever--Luke, puke...he's a bum compared to what I've been doing lately! Of course, I obliged and rubbed her tummy like the good boy I am. But I've got to learn to walk so I can escape her babying me all the time! Trust me people, I'm working it! It was nice to get a decent bowl of cheesegrits w/ sausage before therapy. Daddy hasn't quite mastered that yet!
I'm starting to get the hang of this intensive therapy. I was a little irritable when Ms. Amber was giving me my weighted message, but Ms. Beth sang away my blues. When Ms. Tammy put on my TheraSuit I didn't cry, not even when she tightened it! We did some sit-ups on the huge bouncy thing and that was so much fun it didn't feel like work. Finally Mommy came out from where she was hiding (although I saw her watching me...she wasn't too sneaky). Then we did the exercise I dread--side push-ups.
After that, Daddy decided he'd "walk in my shoes" for a little bit. He tried on the adult sized Terror Suit and when he was putting it on, I got a little upset. Scared that he couldn't handle it, I guess. He only stayed in it for a measly 30 minutes. He said it felt very supportive, like he couldn't hunch over if he wanted to. Of course, he didn't have the full suit on, just the vest and shorts (and I must say I make that suit look a lot better than Daddy).
Ms. Tammy put me in the harness so I could do some walking, this time with the full suit on. It was not as much fun as being free from my bottom suit like on Thursday. It was hard work and it really wore me out, but Ms. Beth came in again with her guitar and that was a treat. I also did some "surfing" on the swing with Ms. Tammy. I liked that a lot.
After therapy was over, I took an hour-long nap then Mommy and Daddy took me for a swim in the Rosenburg's pool. It felt great! After my bath, I had a great dinner of chicken fingers and yummy soup Nana got for me and followed it with two bowls of ice cream. I was ready for bed after that and Mommy and Daddy scooted out to have dinner and a movie with some of Daddy's old high school friends.
I'm proud of how I did, and Mommy did okay too. I thought she would break down and cry but she says she is really impressed with how much love Ms. Tammy has for me and seeing it in person makes her feel better about what I'm doing. She says at first glance it doesn't look like I may be making any dramatic improvement, but am making small important gains every day. Mommy thought my calf muscles felt a little more defined. A little? Lady, I'm ripped now! I'm ready to visit with my Tallahassee Lassie Olivia and give her a "ticket to the gun show!" (Guns being my massive muscles, Grandma and Grandpa!). I've also made a super-cool new friend, Ms. Lisa. She's friends with Nana and is a very smart and funny lady. Ms. Lisa wants to get involved with funding for my next go-round of therapy. She is affiliated with a group of bikers who like to do multi-city poker runs to raise money for different causes. She's very hopeful she can help get something together for me. I'll just have to get myself some leather boots, a bandana to wear and some leather chaps too. The only thing I'll need is a babe to sit on the back of my Hog. I hear Ms. Tammy is a biker babe...maybe if she keeps working with me on my balance I can take her with me. She can do therapy while we ride! Get your motor runnin...
I'm starting to get the hang of this intensive therapy. I was a little irritable when Ms. Amber was giving me my weighted message, but Ms. Beth sang away my blues. When Ms. Tammy put on my TheraSuit I didn't cry, not even when she tightened it! We did some sit-ups on the huge bouncy thing and that was so much fun it didn't feel like work. Finally Mommy came out from where she was hiding (although I saw her watching me...she wasn't too sneaky). Then we did the exercise I dread--side push-ups.
After that, Daddy decided he'd "walk in my shoes" for a little bit. He tried on the adult sized Terror Suit and when he was putting it on, I got a little upset. Scared that he couldn't handle it, I guess. He only stayed in it for a measly 30 minutes. He said it felt very supportive, like he couldn't hunch over if he wanted to. Of course, he didn't have the full suit on, just the vest and shorts (and I must say I make that suit look a lot better than Daddy).
Ms. Tammy put me in the harness so I could do some walking, this time with the full suit on. It was not as much fun as being free from my bottom suit like on Thursday. It was hard work and it really wore me out, but Ms. Beth came in again with her guitar and that was a treat. I also did some "surfing" on the swing with Ms. Tammy. I liked that a lot.
After therapy was over, I took an hour-long nap then Mommy and Daddy took me for a swim in the Rosenburg's pool. It felt great! After my bath, I had a great dinner of chicken fingers and yummy soup Nana got for me and followed it with two bowls of ice cream. I was ready for bed after that and Mommy and Daddy scooted out to have dinner and a movie with some of Daddy's old high school friends.
I'm proud of how I did, and Mommy did okay too. I thought she would break down and cry but she says she is really impressed with how much love Ms. Tammy has for me and seeing it in person makes her feel better about what I'm doing. She says at first glance it doesn't look like I may be making any dramatic improvement, but am making small important gains every day. Mommy thought my calf muscles felt a little more defined. A little? Lady, I'm ripped now! I'm ready to visit with my Tallahassee Lassie Olivia and give her a "ticket to the gun show!" (Guns being my massive muscles, Grandma and Grandpa!). I've also made a super-cool new friend, Ms. Lisa. She's friends with Nana and is a very smart and funny lady. Ms. Lisa wants to get involved with funding for my next go-round of therapy. She is affiliated with a group of bikers who like to do multi-city poker runs to raise money for different causes. She's very hopeful she can help get something together for me. I'll just have to get myself some leather boots, a bandana to wear and some leather chaps too. The only thing I'll need is a babe to sit on the back of my Hog. I hear Ms. Tammy is a biker babe...maybe if she keeps working with me on my balance I can take her with me. She can do therapy while we ride! Get your motor runnin...
Thursday, July 23, 2009
Camden's Wings - Day 4
After yesterday's great day I decided to give it another go of being Camden's therapy wingman. I'm sure glad I did as Camden did some amazing things today. We started out the morning with our normal massage and relaxation exercises, and Camden had some to. Camden next did his abdominal crunches and sit to stand drills. He is getting so good about popping up on his own, he just needs a little help keeping his head up. This is what the therasuit hat could help with but we managed to avoid it for one more day.
After a few fussy moments through roll to side sits, we had a rewarding break with some strawberries and cream. While on his break I had the pleasure of meeting an amazing family full of Camden's. That's right, all 3 boys(ages 1,3 and 4)have curly blonde hair, blue eyes, and angel like facial features, and they all have developmental delays. It was scary how closely they all resembled Camden, the therapists were even getting all of their names mixed up. Becky and I thought our geneticist was crazy when she told us the first day she met Camden that he definetly had a genetic disorder due to his blonde hair, blue eyes and baby face. This family was told the same thing with their children although it seems to be a mostly male trait. So who knew that being so good looking came at a cost, maybe it's just God's way of evening out the score.
After some more drills in the fun room it was time to try the monkey cage again. Camden was initialy hesitant but with the help of Ms. Beth, the music therapist, and her group, Camden did some of the most incredible gains to date. He began doing weight bearing drills by himself while trying to dance to the music. He was having trouble taking steps with the knee and leg straps of the suit, so when Ms. Tammy took them off, he literally flew. He was still attached to the cage from bungy cords suspended along the top and connected to his suit for balance, but this was the first time he has walked without a walker or someone holding his arms. Ms. Tammy teared up as we both sat in amazement of his progress from just yesterday. He sort of resembled an astronaut walking in space, which is fitting for the 40th anniversary of the first lunar space walk. He probably walked for around 10 minutes before tiring out. He was so proud of himself, smiling and laughing the whole time. He was rewarded with a nice 20 minute play session in the sensory rice box. Yes we have been collecting rice for the past 6 hours but it was well worth it and we are so proud of Camden's work.
Below is some video of him that I shot of the monkey moon walk. Today was a great day and best of all Mommy will be joining us for tomorrow's session. Thanks again for the prayers and support.
After a few fussy moments through roll to side sits, we had a rewarding break with some strawberries and cream. While on his break I had the pleasure of meeting an amazing family full of Camden's. That's right, all 3 boys(ages 1,3 and 4)have curly blonde hair, blue eyes, and angel like facial features, and they all have developmental delays. It was scary how closely they all resembled Camden, the therapists were even getting all of their names mixed up. Becky and I thought our geneticist was crazy when she told us the first day she met Camden that he definetly had a genetic disorder due to his blonde hair, blue eyes and baby face. This family was told the same thing with their children although it seems to be a mostly male trait. So who knew that being so good looking came at a cost, maybe it's just God's way of evening out the score.
After some more drills in the fun room it was time to try the monkey cage again. Camden was initialy hesitant but with the help of Ms. Beth, the music therapist, and her group, Camden did some of the most incredible gains to date. He began doing weight bearing drills by himself while trying to dance to the music. He was having trouble taking steps with the knee and leg straps of the suit, so when Ms. Tammy took them off, he literally flew. He was still attached to the cage from bungy cords suspended along the top and connected to his suit for balance, but this was the first time he has walked without a walker or someone holding his arms. Ms. Tammy teared up as we both sat in amazement of his progress from just yesterday. He sort of resembled an astronaut walking in space, which is fitting for the 40th anniversary of the first lunar space walk. He probably walked for around 10 minutes before tiring out. He was so proud of himself, smiling and laughing the whole time. He was rewarded with a nice 20 minute play session in the sensory rice box. Yes we have been collecting rice for the past 6 hours but it was well worth it and we are so proud of Camden's work.
Below is some video of him that I shot of the monkey moon walk. Today was a great day and best of all Mommy will be joining us for tomorrow's session. Thanks again for the prayers and support.
Wednesday, July 22, 2009
Calling all Phone Technicians - Day 3
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!
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!
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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