Tag Team Therapy and Blog Maintenance
Every four to eight weeks, we pack up a bunch of toys and other paraphernalia and head off to Chicago to La Rabida for Tag Team Therapy! This is a session - usually 2 to 3 hours - of intense Physical, Occupational, and Speech Therapy services. Intense for ALL of us! This is what we did on April 27.
These services are to take the place of what Christopher would normally be getting from the school district. Not just to take the place, but go over and beyond. The school district does not have the time or support to do this type of therapy. La Rabida is primarily a rehab hospital for children. Many of the children there have brain injuries, severe burns, amputations, etc. These therapists have the updated training and experience that school therapists just don't have the chance to get.
So, we take our own toys for two reasons: #1. Our therapy appointment takes place in a room in the therapy department as opposed to the big therapy gym on site. While there are lots of neat pieces of equipment up in the gym, we don't have them at home and we can't control how clean they are. I know they wipe them down, but better be safe than sorry. Christopher cannot be exposed to all of those people. He wears a mask when we go in until we are in the therapy room. #2. We DON'T have all of those neat things at home! We have lots of our own stuff, and these are the things that we use everyday. Christopher takes a long time to warm up to ANY new toy. We have to utilize our time at therapy wisely. We don't have time for him to get used to their version of the same toys we have at home.
Here is a picture of our "toy tote". We love these Ziploc Flexible totes. This is the smaller one. They have a larger one, twice this size, that we use to store seasonal clothes, etc. We try to pick a representation of ALL of the things that we are doing since the last appointment. For example: one set of flashcards, one book, one push button toy, etc.
On the Physical therapy/occupational therapy front, we are having some issues. Not with our therapists, they are wonderful! With Christopher....well with his legs. Christopher has had to over come A LOT in his six years. He has the Down syndrome hypotonia, brain damage, heart and lung issues, and he is considered as Failure to thrive (FTT), so his nutrition has been less than optimal. There is also debate over whether he is missing entire muscle groups, or if he has a metabolic/mitochondrial disorder that effects his ability to make muscle tissue. He is still unable to sit independently, although that is getting better. We will never say never, but there is little possibility that he will walk for long distances on his own. Our goal is to get him the ability to transfer himself from his wheelchair to the bed or toilet, walk across the room, or at least be able to stand.
Back to the crazy legs. With the hypotonia, Christopher has always been able to, and does on purpose, dislocate and reduce (Put back) many of his joints. Drives us nuts, but it is what it is. Well, his kneecaps were no exception. When he would bend his knees, his kneecaps would slide to the outside of the joint. We were continuously putting those darn kneecaps back in to place, but it seemed as if Christopher hurt less if the kneecap dislocated when he bent his knees. Fast forward to today. His kneecaps are now permanently dislocated. See the picture below:
You should be able to see the entire joint is visible and the patella (kneecap) is sticking out on the outside of the joint. The PT and OT believe that part of the problem is the ligament that runs from the hip down the outside of the femur (thigh) and connects to the patella. This is tightening up, while the counterpart ligament on the inside of the leg is stretching. This is causing not only his patella to be permanently relocated to the side of his knee, but it is making it so that it is impossible to completely straighten his legs. The bottom parts of his legs are being pulled out sideways to so that it looks as if he is severely knock kneed. His legs are bent at about a 30 degree angle. See pictures below:
Obviously, we are doing all that we can to correct this as soon as possible and WITHOUT surgery. We have tried taping, splints, etc. Right now, it is too bad to even put him in his stander. So, next appointment the PT/OT with do therapy and brainstorm, then we meet with the Ortho doc. Pic below is with splints on. Notice how they are pulling at the top to the inside. This is because of the knees.
Speech therapy was mostly working on our communication skills. We still hope to get some verbal speech going or at least clear speech for the few words that he has. We are still working towards less aversion, using the muscles in his mouth and neck more, and less tongue thrust.
So after therapy services, we went back to Lincoln Park Zoo. We have been there before, but it was so hot that most of the animals were inside. We decided to try to go again. We were so glad we did! We love LPZ!
As you know, Chicago is known as the Windy City. It was living up to that on Tuesday. Here are a few pictures of Lake Michigan outside La Rabida that day. I have never seen whitecaps the way they were that day! I am sure there are days when they are bigger, but you could have easily surfed that day. :)
Here is a montage of our zoo pictures. Some of the pictures of the inside exhibits are a bit dark. You can see them easier on some computers, so I included them. Christopher really enjoyed the monkeys (the Chimps seemed to like him as well. They followed us around), the meercats, and the fish.
I am working hard at getting the pages at the top of the blog updated with links. Please check back often to see if there is something you can use. Leave me a message if you find something you like, something that doesn't work, or if there is something you would like for me to add. Many links fit in more than one sections, so if you think something needs to be listed in more than one place please let me know.
Have a great weekend!
Hugs!
Steph
These services are to take the place of what Christopher would normally be getting from the school district. Not just to take the place, but go over and beyond. The school district does not have the time or support to do this type of therapy. La Rabida is primarily a rehab hospital for children. Many of the children there have brain injuries, severe burns, amputations, etc. These therapists have the updated training and experience that school therapists just don't have the chance to get.
So, we take our own toys for two reasons: #1. Our therapy appointment takes place in a room in the therapy department as opposed to the big therapy gym on site. While there are lots of neat pieces of equipment up in the gym, we don't have them at home and we can't control how clean they are. I know they wipe them down, but better be safe than sorry. Christopher cannot be exposed to all of those people. He wears a mask when we go in until we are in the therapy room. #2. We DON'T have all of those neat things at home! We have lots of our own stuff, and these are the things that we use everyday. Christopher takes a long time to warm up to ANY new toy. We have to utilize our time at therapy wisely. We don't have time for him to get used to their version of the same toys we have at home.
Here is a picture of our "toy tote". We love these Ziploc Flexible totes. This is the smaller one. They have a larger one, twice this size, that we use to store seasonal clothes, etc. We try to pick a representation of ALL of the things that we are doing since the last appointment. For example: one set of flashcards, one book, one push button toy, etc.
On the Physical therapy/occupational therapy front, we are having some issues. Not with our therapists, they are wonderful! With Christopher....well with his legs. Christopher has had to over come A LOT in his six years. He has the Down syndrome hypotonia, brain damage, heart and lung issues, and he is considered as Failure to thrive (FTT), so his nutrition has been less than optimal. There is also debate over whether he is missing entire muscle groups, or if he has a metabolic/mitochondrial disorder that effects his ability to make muscle tissue. He is still unable to sit independently, although that is getting better. We will never say never, but there is little possibility that he will walk for long distances on his own. Our goal is to get him the ability to transfer himself from his wheelchair to the bed or toilet, walk across the room, or at least be able to stand.
Back to the crazy legs. With the hypotonia, Christopher has always been able to, and does on purpose, dislocate and reduce (Put back) many of his joints. Drives us nuts, but it is what it is. Well, his kneecaps were no exception. When he would bend his knees, his kneecaps would slide to the outside of the joint. We were continuously putting those darn kneecaps back in to place, but it seemed as if Christopher hurt less if the kneecap dislocated when he bent his knees. Fast forward to today. His kneecaps are now permanently dislocated. See the picture below:
You should be able to see the entire joint is visible and the patella (kneecap) is sticking out on the outside of the joint. The PT and OT believe that part of the problem is the ligament that runs from the hip down the outside of the femur (thigh) and connects to the patella. This is tightening up, while the counterpart ligament on the inside of the leg is stretching. This is causing not only his patella to be permanently relocated to the side of his knee, but it is making it so that it is impossible to completely straighten his legs. The bottom parts of his legs are being pulled out sideways to so that it looks as if he is severely knock kneed. His legs are bent at about a 30 degree angle. See pictures below:
Obviously, we are doing all that we can to correct this as soon as possible and WITHOUT surgery. We have tried taping, splints, etc. Right now, it is too bad to even put him in his stander. So, next appointment the PT/OT with do therapy and brainstorm, then we meet with the Ortho doc. Pic below is with splints on. Notice how they are pulling at the top to the inside. This is because of the knees.
Speech therapy was mostly working on our communication skills. We still hope to get some verbal speech going or at least clear speech for the few words that he has. We are still working towards less aversion, using the muscles in his mouth and neck more, and less tongue thrust.
So after therapy services, we went back to Lincoln Park Zoo. We have been there before, but it was so hot that most of the animals were inside. We decided to try to go again. We were so glad we did! We love LPZ!
As you know, Chicago is known as the Windy City. It was living up to that on Tuesday. Here are a few pictures of Lake Michigan outside La Rabida that day. I have never seen whitecaps the way they were that day! I am sure there are days when they are bigger, but you could have easily surfed that day. :)
Here is a montage of our zoo pictures. Some of the pictures of the inside exhibits are a bit dark. You can see them easier on some computers, so I included them. Christopher really enjoyed the monkeys (the Chimps seemed to like him as well. They followed us around), the meercats, and the fish.
I am working hard at getting the pages at the top of the blog updated with links. Please check back often to see if there is something you can use. Leave me a message if you find something you like, something that doesn't work, or if there is something you would like for me to add. Many links fit in more than one sections, so if you think something needs to be listed in more than one place please let me know.
Have a great weekend!
Hugs!
Steph
posted by Stephanie at
8:31 PM
4 Comments:
Sounds like a whirlwind of therapies but cool at the same time! Dom sees a local ortho out of SIU who used to work with the Shriner's for his lax patella- fortunately, Dom's are not dislocated forever but we did do some major bracing for a while...have a few thoughts if you need them for modifications of braces- looks like your team is on it though. Hate hearing that lil man has another issue to deal with but hope that it is one you can avoid surgery with at least. Thanks for the peek into your life and your lil man is just a doll :)
Oh those little legs look so painful! Yikes! He looks like he's tolerating standing without pain though, thats good!
Aww... that does look painful! Poor little guy. I like that idea of taking all your own toys. I'm assuming you have duplicates at home etc. b/c it is so much trouble to pack/unpack and wipe everything down between each session. :)
The pictures of Christopher really helped me understand better what he (and you) are working on. What a challenging journey!
After all that hard therapy work it's great to have some time at the zoo. And the primates are my favorite too. (I actually specialized in animal behavior/primates in college!)
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