Today was Rhys's follow-up with the high risk clinic at the hospital. We volunteered Rhys in a study while he was in the NICU in order to hopefully help other kids with the research. If you've been reading since day one you will remember us speaking of Dr. Gloom. He is the one heading the study, however we did not see him today. We saw the developmental pedi who will (I'm assuming) pass along the information she collected. They are looking for issues with vision and hearing (which Rhys doesn't have, except the small Rx for farsightedness), and developmental/motor issues (which Rhys has an abundance of). Anyway, the appointment lasted for more than three hours. Rhys handled the length of it better than I expected, but it was just as tiring as I anticipated.
What did we find out? Nothing really that we weren't already aware of. Rhys does have some form of CP. The pedi called him a mixed bag of tricks. He doesn't clearly have one type or another, so she is going back to read the clinical definitions to see how to best identify him. He has spastic CP (because of the stiffness in his legs - which is in line with the location of his brain bleed, it effects leg movement), but he may or may not have it in his arms. He has good motor skills in both arms, but what to do with the fact that the right side is weaker? I don't know a lot about CP to be honest. I've always confused myself with the fact that Rhys has tightening in his legs, but then has weak muscle tone - which seems a contradiction to me. I do know that people with CP can walk and otherwise lead normal lives. On a scale of one to five, one being walking independently and five being completely dependent upon someone else, Rhys is currently somewhere in the middle. The pedi said he is about a year behind, which follows that he was a year old before he started doing much of anything. As we've always been told, it is when kids stop developing that the doctors start to get worried. A lot of times they reach a point developmentally and then it becomes evident there isn't much more to expect from them. She seemed to indicate that is what is typical, and that Rhys's continued development is unusual. I don't really understand that fully so I need to get clarification as to why, based on Rhys's history, she'd expect this of him. I want to know if it is based just on his prematurity or something else.
So, what does this mean? Nothing really. We are doing everything we can think of in terms of therapy for Rhys, and it is just too soon to tell. Rhys's development is very delayed, but how much of that is due to his extreme motor delay? Based on how Rhys has developed I've always felt like if/when he could figure out how to move so many more pieces would fall into place for him. I'm a realist so I don't feel that is being overly optimistic. I just wish we knew the final outcome, but no one does. A baby's brain is so elastic that anything is possible. It is the not knowing that drives me crazy.
But in the meantime, he is healthy and doing well with all his therapy. His PT told me last week she feels like he will walk, he might have a limp, but she thinks he'll move independently. We are starting to discuss orthotics for his feet to help with the scissoring of his legs when he walks. Which incidentally is a bit improved. There has also been discussion about a stander, to make Rhys build his leg muscles up a little more. We're still not sure if Rhys will need a walker when he first starts, but if he needs one we'll get that too. The speech pathologist started up again last week after being on vacation for six weeks. He said he noticed definite improvements in Rhys in that short of a time. We have noticed them too. He isn't anywhere near one hundred percent, but he's getting better with eating and talking. He has always babbled a lot, but now he is articulating his words better. He says mama and dada frequently, in relation to either me or Cody, but not in an attempt to get our attention. It is more like I pick him up and he says mama. And he's also thrown in "no" a few times. The SP has said repeatedly that he thinks Rhys will do well in speech and eating, so I'm going to defer to the expert!
What did we find out? Nothing really that we weren't already aware of. Rhys does have some form of CP. The pedi called him a mixed bag of tricks. He doesn't clearly have one type or another, so she is going back to read the clinical definitions to see how to best identify him. He has spastic CP (because of the stiffness in his legs - which is in line with the location of his brain bleed, it effects leg movement), but he may or may not have it in his arms. He has good motor skills in both arms, but what to do with the fact that the right side is weaker? I don't know a lot about CP to be honest. I've always confused myself with the fact that Rhys has tightening in his legs, but then has weak muscle tone - which seems a contradiction to me. I do know that people with CP can walk and otherwise lead normal lives. On a scale of one to five, one being walking independently and five being completely dependent upon someone else, Rhys is currently somewhere in the middle. The pedi said he is about a year behind, which follows that he was a year old before he started doing much of anything. As we've always been told, it is when kids stop developing that the doctors start to get worried. A lot of times they reach a point developmentally and then it becomes evident there isn't much more to expect from them. She seemed to indicate that is what is typical, and that Rhys's continued development is unusual. I don't really understand that fully so I need to get clarification as to why, based on Rhys's history, she'd expect this of him. I want to know if it is based just on his prematurity or something else.
So, what does this mean? Nothing really. We are doing everything we can think of in terms of therapy for Rhys, and it is just too soon to tell. Rhys's development is very delayed, but how much of that is due to his extreme motor delay? Based on how Rhys has developed I've always felt like if/when he could figure out how to move so many more pieces would fall into place for him. I'm a realist so I don't feel that is being overly optimistic. I just wish we knew the final outcome, but no one does. A baby's brain is so elastic that anything is possible. It is the not knowing that drives me crazy.
But in the meantime, he is healthy and doing well with all his therapy. His PT told me last week she feels like he will walk, he might have a limp, but she thinks he'll move independently. We are starting to discuss orthotics for his feet to help with the scissoring of his legs when he walks. Which incidentally is a bit improved. There has also been discussion about a stander, to make Rhys build his leg muscles up a little more. We're still not sure if Rhys will need a walker when he first starts, but if he needs one we'll get that too. The speech pathologist started up again last week after being on vacation for six weeks. He said he noticed definite improvements in Rhys in that short of a time. We have noticed them too. He isn't anywhere near one hundred percent, but he's getting better with eating and talking. He has always babbled a lot, but now he is articulating his words better. He says mama and dada frequently, in relation to either me or Cody, but not in an attempt to get our attention. It is more like I pick him up and he says mama. And he's also thrown in "no" a few times. The SP has said repeatedly that he thinks Rhys will do well in speech and eating, so I'm going to defer to the expert!
1 comment:
Wow, what a tough doctor visit. It seems like you're handling it well and I'm inspired to see that. Rhys is a tough little fighter boy and I know he's going to surprise everyone. I don't know if you've seen our blog but our 2.5 year old, Romy, has CP and was officially diagnosed around 1. I know every case is different but if you have any questions, I can definitely try to answer them or at least give you our story. She has what they call, spastic diplegia, meaning it affects mostly her legs although she does have some mild weakness in her arms. Her neck and trunk muscles are mildly affected as well. She can sit up and pull to stand and is working on walking using a walker. She doesn't crawl but she scoots on her bottom pushing herself along with her hands.
Anyway, hang in there! You're kids are absolute dolls!
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