Within the past week, we have been on two separate medical adventures with boring endings. The adventure is getting to these appointments. Then when you get there and expect the Magic Kingdom (expert advice), you get Gatorland (bad or no advice). Oops, wrong turn!
The first appointment was a Developmental Clinic held at Madigan Army Medical Center, west of Tacoma. We saw 7 doctors in 3 hours: a developmental pediatrician, an orthopedics specialist, a physical therapist, 2 geneticists, and 2 neurologists. I also shouldn't forget the high school student who was observing (??). Oh, and a social worker. Let me list each one to show you how stupid the whole thing was:
Dev. pediatrician: His observation of Evan was that he was progressing like a normal 17 month old. Stupid comment made- "That brace he wears at night doesn't do anything. What's that going to do?"
Ortho guy: Didn't really tell us anything new.
PT: "Work on that torticollis." No shit.
Geneticists: Can't really tell us much. We might do a blood test to rule one disorder out. But, what he most likely has is not genetic. Yup, we knew that. Stupid comment made- "He doesn't need to write, he can just talk into a computer." Are you serious?? You are at least 80 years old. Time to hang it up. Another stupid comment: "One of his eyes is lower than the other." I said, "you mean like most people? My husband and I both have one eye slightly lower. I have crooked ears, too." His response, "Well, yeah, like that." Thanks, doc!!
Neurologists: They couldn't find any observation that would lead them to believe something was wrong with his brain. They did, however, let me know that his eyelids are short, meaning his eyes look like his Dad's eyes. John has a large brow bone and not a lot of eyelid. I didn't know we needed a neurologist to tell us he looks like his Dad. Un-be-lievable!
Then, as a group they watched him run back and forth down the hall. They all observed that his legs were farther apart when he walked than his sisters were. I asked them, "Isn't that because he just started walking and she's been walking for 6 months? Their response, "Yes."
I should also mention that the social worker asked me how I was handling things. And then I rang her neck. Kidding!!
So I drove all the way down there, with my Dad's help thank god, for this bunch of crap? I did this clinic, even though my instinct was that it was not needed, because I didn't want to be that mother that denies her son medical help and opinions.
I will just mention the second clinic we did yesterday really quick. Went to Seattle Children's Hospital to the Limb Difference Clinic, which involved a physiatrist (rehab doctor) and an occupational therapist, both specializing in limb differences. And some others I had no idea who they were. We visited them because, obviously, Evan has limb differences, but primarily to make sure I am doing everything I can for him. It was unanimous that I am do everything and that Evan is remarkable. There advice is to let him figure things out on his own. I (we) already do. I guess it was good to get some confirmation that I'm doing the right thing, though. I've been worried that he is lacking some kind of therapy because we don't know what muscles he is missing on the left side. The physiatrist says that current medical thinking is that you work with what you do have, not with what you don't. So the plan is to keep on going to therapy and hopefully everything will work out.
The point to these stories is that we are done putting Evan through this stuff. John and I have been able to email back and forth a little bit. He told me that we need to set him free. Free to have a normal childhood and stop with these specialists that aren't needed. We will see the ones we have to when we need to, but no more poking and prodding to educate others. He's unique, but still the same as the rest of us, so now we are going to concentrate on playing! Yay, Evan!
The first appointment was a Developmental Clinic held at Madigan Army Medical Center, west of Tacoma. We saw 7 doctors in 3 hours: a developmental pediatrician, an orthopedics specialist, a physical therapist, 2 geneticists, and 2 neurologists. I also shouldn't forget the high school student who was observing (??). Oh, and a social worker. Let me list each one to show you how stupid the whole thing was:
Dev. pediatrician: His observation of Evan was that he was progressing like a normal 17 month old. Stupid comment made- "That brace he wears at night doesn't do anything. What's that going to do?"
Ortho guy: Didn't really tell us anything new.
PT: "Work on that torticollis." No shit.
Geneticists: Can't really tell us much. We might do a blood test to rule one disorder out. But, what he most likely has is not genetic. Yup, we knew that. Stupid comment made- "He doesn't need to write, he can just talk into a computer." Are you serious?? You are at least 80 years old. Time to hang it up. Another stupid comment: "One of his eyes is lower than the other." I said, "you mean like most people? My husband and I both have one eye slightly lower. I have crooked ears, too." His response, "Well, yeah, like that." Thanks, doc!!
Neurologists: They couldn't find any observation that would lead them to believe something was wrong with his brain. They did, however, let me know that his eyelids are short, meaning his eyes look like his Dad's eyes. John has a large brow bone and not a lot of eyelid. I didn't know we needed a neurologist to tell us he looks like his Dad. Un-be-lievable!
Then, as a group they watched him run back and forth down the hall. They all observed that his legs were farther apart when he walked than his sisters were. I asked them, "Isn't that because he just started walking and she's been walking for 6 months? Their response, "Yes."
I should also mention that the social worker asked me how I was handling things. And then I rang her neck. Kidding!!
So I drove all the way down there, with my Dad's help thank god, for this bunch of crap? I did this clinic, even though my instinct was that it was not needed, because I didn't want to be that mother that denies her son medical help and opinions.
I will just mention the second clinic we did yesterday really quick. Went to Seattle Children's Hospital to the Limb Difference Clinic, which involved a physiatrist (rehab doctor) and an occupational therapist, both specializing in limb differences. And some others I had no idea who they were. We visited them because, obviously, Evan has limb differences, but primarily to make sure I am doing everything I can for him. It was unanimous that I am do everything and that Evan is remarkable. There advice is to let him figure things out on his own. I (we) already do. I guess it was good to get some confirmation that I'm doing the right thing, though. I've been worried that he is lacking some kind of therapy because we don't know what muscles he is missing on the left side. The physiatrist says that current medical thinking is that you work with what you do have, not with what you don't. So the plan is to keep on going to therapy and hopefully everything will work out.
The point to these stories is that we are done putting Evan through this stuff. John and I have been able to email back and forth a little bit. He told me that we need to set him free. Free to have a normal childhood and stop with these specialists that aren't needed. We will see the ones we have to when we need to, but no more poking and prodding to educate others. He's unique, but still the same as the rest of us, so now we are going to concentrate on playing! Yay, Evan!
