What Doesn't Kill You Makes You Stronger - Part 1
That one song line has been playing in my head all afternoon and it seems so appropriate for how the past week has gone.
On Tuesday we had another appointment with Wesley's neurologist and rehab doctor (in the stroke clinic). They confirmed that Wes has CP and talked a little bit more about his MRI. After examining him, the doctors noted that his legs have gotten a lot stiffer since they saw him two months ago. The rehab doctor discussed possible medications we could give Wes to help loosen up his legs but unfortunately those medications are general muscle relaxers so they would decrease his entire body's muscle tone. Right now Wes is hypotonic (low tone) in his torso and neck and hypertonic (high tone) in his legs and hands so a muscle relaxer would make it easier for him to stretch his legs out but harder for him to hold his head up. After the appointment I did some research on my own and I think I'll ask about starting Botox treatments. Just like when someone gets Botox in their face, Wes would get monthly injections in the tight muscles to help them relax. I'm not sure why they didn't mention this as an option but Wesley's physical therapist said she has seen it work great for other kids she sees.
The rehab doctor also recommended that Wesley start to get physical therapy twice a week to help him reach some of his developmental milestones and stretch out his legs. I figured that if I had a doctor's recommendation (he even wrote a prescription for it) it would be easy to get that setup. Well currently his PT is funded and provided through our county Early Intervention program. With that, therapists come to our house weekly for PT and for speech therapy. When I talked to Wesley's physical therapist, she seemed interested in seeing him twice a week but wasn't sure if the Early Intervention program would allow it. When I talked with his Early Intervention coordinator, I got a speech about about how their philosophy is therapists are there to teach parents how to help their child so the parents can do therapy every day with their child. Now I'm all for learning how to help Wesley and I pay attention during his sessions and try to do a lot when his therapists aren't there (especially stretching), BUT I am Wesley's mom not his therapist. I honestly can't take on the role of therapist on top of everything else I need to do as his mom and if I feel like I have to be his therapist, I will just end up feeling guilty for not doing it perfectly. His therapists went and got master's degrees to be specialists. I may be a "specialist" in Wesley, but I by no means a physical therapist or speech therapist.
Ideally Wesley would see the physical therapist he's currently seeing twice a week but since Early Intervention won't do twice a week, I started looking for physical therapy that our insurance will pay (even though that means we'll have to drive to Denver for it). So the first person I talk to at the Children's Hospital Littleton office gives me the same speech about Wesley not needing therapy twice a week because they train parents to be therapists every day. She tells me the at Cerebral Palsy is not a progressive disease so one hour a week should "suffice." Well I don't want what will "suffice" for my son, I want whatever will give him the best opportunity to thrive. His brain condition may not change but his muscle tone will change based on how much or little stretching and work is done and he will continue to make developmental progress if he is given the right help and opportunities. She (in my mind at least) implied that since Wes has Cerebral Palsy, therapy more or less therapy isn't going to make any different. Way to give a family hope and motivation! At this point, I was frustrated and incredibly confused why the rehab doctor would tell me to get therapy twice a week if no one would do it (although I heard another mom from Anchor say that her daughter gets PT 6 days a week!). So in a final effort, I called the Children's Hospital main campus to see if they would schedule Wes twice a week even though we would have to go to Aurora. Although the scheduler seemed caught off guard by my request, she went ahead and scheduled it for the entire month of August. I'm hoping whatever therapist he sees there will agree with the rehab doctor and continue this intensive therapy. I was able to schedule about half of the appointments for days we'll already be in Denver but this will mean 6 therapy session a week (4 in Denver).
I am becoming quite a squeaky wheel but I just want Wesley to get the best. Every day I feel more empathetic for the parents of special needs kids I had in my classes. I'm sure I will be just as much, if not more, of a "pain" to Wesley's teachers after I've been doing this for 15 years!
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On Tuesday we had another appointment with Wesley's neurologist and rehab doctor (in the stroke clinic). They confirmed that Wes has CP and talked a little bit more about his MRI. After examining him, the doctors noted that his legs have gotten a lot stiffer since they saw him two months ago. The rehab doctor discussed possible medications we could give Wes to help loosen up his legs but unfortunately those medications are general muscle relaxers so they would decrease his entire body's muscle tone. Right now Wes is hypotonic (low tone) in his torso and neck and hypertonic (high tone) in his legs and hands so a muscle relaxer would make it easier for him to stretch his legs out but harder for him to hold his head up. After the appointment I did some research on my own and I think I'll ask about starting Botox treatments. Just like when someone gets Botox in their face, Wes would get monthly injections in the tight muscles to help them relax. I'm not sure why they didn't mention this as an option but Wesley's physical therapist said she has seen it work great for other kids she sees.
The rehab doctor also recommended that Wesley start to get physical therapy twice a week to help him reach some of his developmental milestones and stretch out his legs. I figured that if I had a doctor's recommendation (he even wrote a prescription for it) it would be easy to get that setup. Well currently his PT is funded and provided through our county Early Intervention program. With that, therapists come to our house weekly for PT and for speech therapy. When I talked to Wesley's physical therapist, she seemed interested in seeing him twice a week but wasn't sure if the Early Intervention program would allow it. When I talked with his Early Intervention coordinator, I got a speech about about how their philosophy is therapists are there to teach parents how to help their child so the parents can do therapy every day with their child. Now I'm all for learning how to help Wesley and I pay attention during his sessions and try to do a lot when his therapists aren't there (especially stretching), BUT I am Wesley's mom not his therapist. I honestly can't take on the role of therapist on top of everything else I need to do as his mom and if I feel like I have to be his therapist, I will just end up feeling guilty for not doing it perfectly. His therapists went and got master's degrees to be specialists. I may be a "specialist" in Wesley, but I by no means a physical therapist or speech therapist.
Ideally Wesley would see the physical therapist he's currently seeing twice a week but since Early Intervention won't do twice a week, I started looking for physical therapy that our insurance will pay (even though that means we'll have to drive to Denver for it). So the first person I talk to at the Children's Hospital Littleton office gives me the same speech about Wesley not needing therapy twice a week because they train parents to be therapists every day. She tells me the at Cerebral Palsy is not a progressive disease so one hour a week should "suffice." Well I don't want what will "suffice" for my son, I want whatever will give him the best opportunity to thrive. His brain condition may not change but his muscle tone will change based on how much or little stretching and work is done and he will continue to make developmental progress if he is given the right help and opportunities. She (in my mind at least) implied that since Wes has Cerebral Palsy, therapy more or less therapy isn't going to make any different. Way to give a family hope and motivation! At this point, I was frustrated and incredibly confused why the rehab doctor would tell me to get therapy twice a week if no one would do it (although I heard another mom from Anchor say that her daughter gets PT 6 days a week!). So in a final effort, I called the Children's Hospital main campus to see if they would schedule Wes twice a week even though we would have to go to Aurora. Although the scheduler seemed caught off guard by my request, she went ahead and scheduled it for the entire month of August. I'm hoping whatever therapist he sees there will agree with the rehab doctor and continue this intensive therapy. I was able to schedule about half of the appointments for days we'll already be in Denver but this will mean 6 therapy session a week (4 in Denver).
I am becoming quite a squeaky wheel but I just want Wesley to get the best. Every day I feel more empathetic for the parents of special needs kids I had in my classes. I'm sure I will be just as much, if not more, of a "pain" to Wesley's teachers after I've been doing this for 15 years!
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This is Wesley's neck-tube (direct from China)! I know it looks ridiculous but it's great because it doesn't force him to hold his head up so instead he can focus on what it feels like to move his arms and legs in the water.
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