Saturday, May 19, 2012
Wednesday, May 9, 2012
Spring Fling
Dear all of you out there, dear fans and blog readers, friends and family,
A lot has happened lately, as usual, what else is new? and I must fill you in on our latest endeavors.
First off, we went to see a gastroenterologist at Stanford, a very nice and considerate woman who checked Zoé's little rectum and noticed how dilated it is. Unfortunately, her sphincters and colon are most probably dilated as well. She suggested an X-Ray that I decided to bypass for now, and so we were given a protocol of first off doing a "clean-up" of Zoé's colon: 1 cap full of Miralax three times a day, for 3 days and 1 ex-lax (stimulant) 3 times a day for 3 days. My poor baby is going to turn into a "pooping" machine, but at least it might be good to completely flush her out. Then, we'll assess how to reintroduce Miralax in small doses everyday and we were told to put her on the potty every 30 minutes after each bite of food he ingests....fun times ahead on Rose Avenue!
We'll see the doctor again in 3 months.
We then went back to Shriners for our biannual visit with Dr. MacDonald, a really nice, open, caring, congenial doctor who is the best in terms of services, helping us find good ways to assist Zoé. He wrote us three prescriptions:
* one for the speech-language group treatment, the play therapy Zoé has once a week, where she plays with a neuro-typical girl and learns social cues, how to interact and socialize with her peers. It seems to be working quite well. Of course, that's a therapy we pay out of pocket for now, we need to have it approved by the insurance company. What kills me is that play dates should be free and we pay $68/30 minutes of play time...
cannot wait for hours of free beach time in Brittany this summer...yeah!
* a prescription for Sensory integration treatment, that is given by Liz, our wonderful OT that Zoé works with on Saturdays.
* and finally a prescription for a new pair of SMO's, shoe inserts, soft orthotics that Zoé will have to wear. We are back in bracing mode, with casting of the foot in three weeks.
We'll see Dr. MacDonald again in 6 months.
What is new in terms of Zoé's sensory input is how noises and smells tend to bother her: She thinks lightly-scented body creams smell bad, she HATES having her hair combed, she dislikes the noise of the water faucet, she says it is "too loud" and puts her hands on her ears to prevent her from hearing it.
Liz and I discussed the idea of Zoé being on "the spectrum" and we both "think" she is not (we both agree that we are NOT doctors though), and we talked about ADHD and ADD. Liz thinks that Zoé's problem regarding attention is linked to her muscle weakness. Indeed, she is often tired and therefore, it is harder to focus when fatigue gets in the way. Liz thinks that since Zoé doesn't control her body, she likes to control her surroundings and environment. That is something predictable, it gets anxiety out of the way and that's why she is constantly fidgeting...we take so many daily routine events for granted, for Zoé, it is like climbing Mt Everest all day long!
On a different note, I am still battling insurance policies, pre-notifications, out-of-network providers, evaluations, claims, deductible, etc....blablabla
What do I do when i get a bit of free time? I paint. My own therapy: a world of colors and paint brushes, of imagination, of poetry and inner peace.
Namaste!
A lot has happened lately, as usual, what else is new? and I must fill you in on our latest endeavors.
First off, we went to see a gastroenterologist at Stanford, a very nice and considerate woman who checked Zoé's little rectum and noticed how dilated it is. Unfortunately, her sphincters and colon are most probably dilated as well. She suggested an X-Ray that I decided to bypass for now, and so we were given a protocol of first off doing a "clean-up" of Zoé's colon: 1 cap full of Miralax three times a day, for 3 days and 1 ex-lax (stimulant) 3 times a day for 3 days. My poor baby is going to turn into a "pooping" machine, but at least it might be good to completely flush her out. Then, we'll assess how to reintroduce Miralax in small doses everyday and we were told to put her on the potty every 30 minutes after each bite of food he ingests....fun times ahead on Rose Avenue!
We'll see the doctor again in 3 months.
We then went back to Shriners for our biannual visit with Dr. MacDonald, a really nice, open, caring, congenial doctor who is the best in terms of services, helping us find good ways to assist Zoé. He wrote us three prescriptions:
* one for the speech-language group treatment, the play therapy Zoé has once a week, where she plays with a neuro-typical girl and learns social cues, how to interact and socialize with her peers. It seems to be working quite well. Of course, that's a therapy we pay out of pocket for now, we need to have it approved by the insurance company. What kills me is that play dates should be free and we pay $68/30 minutes of play time...
cannot wait for hours of free beach time in Brittany this summer...yeah!
* a prescription for Sensory integration treatment, that is given by Liz, our wonderful OT that Zoé works with on Saturdays.
We'll see Dr. MacDonald again in 6 months.
What is new in terms of Zoé's sensory input is how noises and smells tend to bother her: She thinks lightly-scented body creams smell bad, she HATES having her hair combed, she dislikes the noise of the water faucet, she says it is "too loud" and puts her hands on her ears to prevent her from hearing it.
Liz and I discussed the idea of Zoé being on "the spectrum" and we both "think" she is not (we both agree that we are NOT doctors though), and we talked about ADHD and ADD. Liz thinks that Zoé's problem regarding attention is linked to her muscle weakness. Indeed, she is often tired and therefore, it is harder to focus when fatigue gets in the way. Liz thinks that since Zoé doesn't control her body, she likes to control her surroundings and environment. That is something predictable, it gets anxiety out of the way and that's why she is constantly fidgeting...we take so many daily routine events for granted, for Zoé, it is like climbing Mt Everest all day long!
On a different note, I am still battling insurance policies, pre-notifications, out-of-network providers, evaluations, claims, deductible, etc....blablabla
What do I do when i get a bit of free time? I paint. My own therapy: a world of colors and paint brushes, of imagination, of poetry and inner peace.
Namaste!
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| Balance Beam |
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| Zoé's schedule |
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| OT wonder: Liz |
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| Oaklandish girl |
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