That's little Marisol a few days after her diagnosis with CP (cerebral palsy). It was almost two years ago, and I am so happy to say that she is doing awesome. She can do things now that she couldn't do just weeks or months ago. Over these two years, our feelings about her CP have evolved just as much as she has. I remember being so scared when we first heard our baby had cerebral palsy. But now, it's just another thing about her, NOT the most important thing about her.
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That first day of the diagnosis though, we were unsure of what this would mean for her and for our family. We sent this message to our friends and family:
Dear Friends and Family:
I already talked to some of you on the phone, but I am a little tired of all the re-explaining, although eventually I plan to talk to all of you about this in person. So I thought I'd send this out as a sort of quick overview of what is happening with Mari and we can talk more of course!
So-Marisol was diagnosed yesterday with cerebral palsy. What does that mean for her? Not that much hopefully!
The things we know so far-- she has increased muscle tone on her left side, particularly her hand and lower leg and foot. So when she walks she way overpronates and flexes her little foot and when she isn't thinking about it, her left arm hangs like a bird's folded wing with a closed fist. She does use her left hand, but she has poor fine motor control, and when she does things like swing her arm as she walks, she only does it with the right one.
We only saw the pediatric orthopedist yesterday, so we still need to meet with the other medical professionals that will constitute her "team"--including a neurologist (he won't want to see her until the cast the ortho has her in is off in about a month), and physiatrist (basically a physicaltherapy/rehab doctor), and I imagine also physical/occupational therapists. She will probably also need a speech therapist, if not for the cerebral palsy, for the cleft palate.
The ortho said she does not anticipate the neuro finding any additional problems, but obviously we need to get her a full neuro workup.
At this point, we don't think her CP is affecting her cognition at all--she seems to be super smart and speaking on time, but that, along with a lot ofother things, we won't know until she is older.
What's the treatment?
There is no cure. There is treatment to manage the CP: We don't know what all this will include, but it will include for sure--
A brace for her left leg for her lifetime, to keep her foot and leg muscles loose and flexible so she can walk and play sports and do whatever shewants. The brace will make this all possible.
Right now, a series of hard casts for the next month or so to stretch out her foot and achilles tendon. Basically it looks like she broke her leg, except that she can run with it!
Then, like I said, probably regular physical therapy to help her learn how to use her left hand and foot and keep them stretched out and loose.
It really shouldn't interfere with anything she wants to do. She can play sports, run, walk, anything. Sure she may not be the best typist and will have to work harder to play an instrument, but this little girl is one tough cookie and I know she will learn how to do everything, even if it's hardwork--which it will be.
This is a STATIC condition, meaning it won't get better, but it shouldn't get worse as long as we follow through on her treatment. It won't spread; whatever injury happened to her brain, it's done. We will now have to learn what is affected and teach her how to cope.
She has MILD Cerebral Palsy. She will not be in a wheelchair--she is the same girl you all know and love. We just learned a little more about her.She is as capable as any other kid, some things are just harder for her. But I like to think she is tougher than the average kid. I mean she's already been through surgery!
How is she?
She is FINE. We told her her cast was a special Abby Cadabby Cast and she thinks it is "nice." She started running on it right away, and while she has asked to take it off, we explained only the doctor can take it off and she was fine.
How are we?
Well, yesterday was rough. We had this whole picture in our minds of what her life would be like--the sports, instruments, trips, day to day little girl things we'd do with her, and when the doctor said cerebral palsy, it's like she pulled a great big lever that moved us off that track and put us ona another track.
I think we'll end up in the same place, but the path will sure be different. We have to grieve that future we had in our minds for her and accept thenew one, which IS ALSO GREAT, but different than expected.
So, now I am trying to get the picture of her in a brace to be the new normal in my mind.
Today, looks much brighter. She's the same girl she was yesterday. She is still perfect, just as she is.
We will have to teach her how to deal with the inevitable teasing, how to navigate puberty and adolescence with a disability, and more, but I know we can do this for her and I know that she will teach us how to be the parents she needs--she already is.
So--that's what's up! Thanks for all the support and kind words you have always given us as friends and family. And if you wanna check out thesuper cool Abby Cadabby cast, it'll be on for the next month or so. Otherwise, you'll see the super awesome supergirl brace at her birthday party:)
Abrazos,
Elsie
So-Marisol was diagnosed yesterday with cerebral palsy. What does that mean for her? Not that much hopefully!
The things we know so far-- she has increased muscle tone on her left side, particularly her hand and lower leg and foot. So when she walks she way overpronates and flexes her little foot and when she isn't thinking about it, her left arm hangs like a bird's folded wing with a closed fist. She does use her left hand, but she has poor fine motor control, and when she does things like swing her arm as she walks, she only does it with the right one.
We only saw the pediatric orthopedist yesterday, so we still need to meet with the other medical professionals that will constitute her "team"--including a neurologist (he won't want to see her until the cast the ortho has her in is off in about a month), and physiatrist (basically a physicaltherapy/rehab doctor), and I imagine also physical/occupational therapists. She will probably also need a speech therapist, if not for the cerebral palsy, for the cleft palate.
The ortho said she does not anticipate the neuro finding any additional problems, but obviously we need to get her a full neuro workup.
At this point, we don't think her CP is affecting her cognition at all--she seems to be super smart and speaking on time, but that, along with a lot ofother things, we won't know until she is older.
What's the treatment?
There is no cure. There is treatment to manage the CP: We don't know what all this will include, but it will include for sure--
A brace for her left leg for her lifetime, to keep her foot and leg muscles loose and flexible so she can walk and play sports and do whatever shewants. The brace will make this all possible.
Right now, a series of hard casts for the next month or so to stretch out her foot and achilles tendon. Basically it looks like she broke her leg, except that she can run with it!
Then, like I said, probably regular physical therapy to help her learn how to use her left hand and foot and keep them stretched out and loose.
It really shouldn't interfere with anything she wants to do. She can play sports, run, walk, anything. Sure she may not be the best typist and will have to work harder to play an instrument, but this little girl is one tough cookie and I know she will learn how to do everything, even if it's hardwork--which it will be.
This is a STATIC condition, meaning it won't get better, but it shouldn't get worse as long as we follow through on her treatment. It won't spread; whatever injury happened to her brain, it's done. We will now have to learn what is affected and teach her how to cope.
She has MILD Cerebral Palsy. She will not be in a wheelchair--she is the same girl you all know and love. We just learned a little more about her.She is as capable as any other kid, some things are just harder for her. But I like to think she is tougher than the average kid. I mean she's already been through surgery!
How is she?
She is FINE. We told her her cast was a special Abby Cadabby Cast and she thinks it is "nice." She started running on it right away, and while she has asked to take it off, we explained only the doctor can take it off and she was fine.
How are we?
Well, yesterday was rough. We had this whole picture in our minds of what her life would be like--the sports, instruments, trips, day to day little girl things we'd do with her, and when the doctor said cerebral palsy, it's like she pulled a great big lever that moved us off that track and put us ona another track.
I think we'll end up in the same place, but the path will sure be different. We have to grieve that future we had in our minds for her and accept thenew one, which IS ALSO GREAT, but different than expected.
So, now I am trying to get the picture of her in a brace to be the new normal in my mind.
Today, looks much brighter. She's the same girl she was yesterday. She is still perfect, just as she is.
We will have to teach her how to deal with the inevitable teasing, how to navigate puberty and adolescence with a disability, and more, but I know we can do this for her and I know that she will teach us how to be the parents she needs--she already is.
So--that's what's up! Thanks for all the support and kind words you have always given us as friends and family. And if you wanna check out thesuper cool Abby Cadabby cast, it'll be on for the next month or so. Otherwise, you'll see the super awesome supergirl brace at her birthday party:)
Abrazos,
Elsie
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As you can see by my abuse of exclamation points, I was trying to stay positive! and put on a brave face! and look at the bright side! But, really, I was so so sad. As Gabe said to me on the drive home from the doctor's, "I just wish she could get a fucking break."
When she was born with a cleft palate we hoped that would be the only health problem she would face, but it's not. (It also didn't help that the first pediatric ortho we saw was terrible. She dropped the diagnosis very coldly and gave us an inappropriate treatment plan, which our now wonderful pediatric orthopedist changed at his first visit with Marisol just two weeks after the diagnosis.) As we educated ourselves about CP, we also had to grieve a bit before we could get to where we are now, which is so proud of how she is kicking CP's ass.
Two years after the diagnosis, I can say this: She is fierce and determined. She works HARD at physical and occupational therapy. Her therapists are always impressed by how game she is to try things. Her little body is lean but lined with muscle from doing plank pose, pull ups, and rock wall climbing! She rides her bike with abandon and loves dancing.
I don't mean to downplay the seriousness of CP. She has very very mild CP and many kids with CP, regardless of how hard they try, can not function as well as she does. So we know that much of this is luck. She is lucky that her CP is so mild. But we are also lucky that she is a damned warrior of a girl.
For any parents out there who are struggling to accept a disability or difference in their child, I just wanted to share that no matter how scary it maybe at first to learn that your child has an unexpected disability, it gets better. Sometimes it gets better because they get better as they learn to deal with their disability, but it also gets better as you get used to it and it becomes just another characteristic that makes them so very special.
I remember telling my nephew that I just wanted to fast forward to the point where we had her therapies all set up, past all the diagnostic appointments with the different specialists, all the way to the point where her CP was just a part of our normal day-to-day life.
I am happy to say we are here. She goes twice weekly to an amazing pediatric PT/OT center run by women who love what they do and are incredibly talented. We are in regular contact with a top team of medical professionals at Children's Hospital. Mari likes them all, especially her nuerologist with pink hair! She goes to dance class weekly, swims in the summer, and will be starting preschool in a few months.
I guess it's not "normal," after all-- it's wonderful.
