A small victory for Little Lady today. We FINALLY (after months of paperwork and waiting) have gotten an approval package from CCS (California Children's Services) to get physical/occupational therapy (and possibly other medical assistance) from the state of California.
Now if all of this will just fall into place, we'll be sitting pretty! Fingers Crossed!!!
Thursday, March 24, 2011
Tuesday, February 22, 2011
Bad Cop, Good Cop... or more accurately, Bad Dr., Good Dr...
Bad Cop
Soooo, way back in January, on the 24th, we had THE WORST appointment I think we've had yet. Our referral to the new Orthopedic Dr was at what is supposedly one of the best facilities in the country. Maybe so... but I've been yet to see the proof. And this appt was no exception. We were seen by a terribly closed minded Dr who had an absurdly awful bedside manner and closed mind. He did not communicate his future treatment plans with me, nor did he even give Little Lady an exam on the table. He sort of checked her out on my lap. He told me things that I knew for a fact to not be true.
His overall attitude suggested two things to me: 1) He had heard of Arthrogryposis, but didn't really know anything about treating it. And 2) He didn't want to be bothered with us.
"Let's do nothing, come back in 3 months" were his words. When I asked what his future plans were for trying to increase range of motion in Little Lady's knee's, he told me "no Dr. has ever successfully done that before". UNTRUE!!
Well... if he thinks for a moment that I will bring my baby girl back to him, then he's lost his mind. We will not be stepping foot into that office again. Period.
Good Cop
On February 18th, Little Lady FINALLY had her appointment at Shriners Hospital for Children. Because we were supposed to be in clinic so early in the morning (7:30am) and it was all the way in Los Angeles, (about two hours away, driving. But can be much longer in traffic, especially morning commute traffic) we stayed the night before in a hotel. Thursday morning we got up, and headed over to the hospital. We signed in to clinic, got registered, and waited. And waited. And waited... Finally (several hours after our appt time) we were paged into clinic, for an appointment with Dr. Hugh Watts. He is a good man. His treatment plan isn't as aggressive as I was hoping for... but he does have a lot of experience with AMC, he isn't "knife happy", and his bedside manner is spectacular. Dr. Watts examined Little Lady more thoroughly than any of the other 3 Orthopedics she's been seen by. He looked at every part of her body, explained things to us in detail as he was doing it, tested her reflexes/muscles... he was great! He is the chief of staff at the LA location, so he didn't have to forward her information to be considered, he just immediately accepted her as a patient. We will return for a more in depth appointment on May 19th. At that time she will likely be seen by the hand surgeon and physical therapist as well. And Dr. Watts will evaluate the progress that Little Lady has made since this past appt. (i.e. can she roll over? Sit up? Try to stand?). Although (as I mentioned) his plans aren't as aggressive as I wanted, I do feel that this may be the time for me to trust someone, and he seems trustworthy. I think that we can build on the relationship, and I don't think that it will be too long until we collectively decide how Little Lady will be treated. I will get a better feel for him, and then we can collaborate. Because although I'm not a Dr... I have done some homework/research and I have some ideas of my own. Hopefully he will work with me on this! But for now...
"Take the first step in faith. You don't have to see the whole staircase, just take the first step."
- Dr. Martin Luther King Jr.
Monday, January 17, 2011
FINALLY!!!!
We FINALLY got our first appointment with Shriners Hospital for Children in L.A. That is in mid-February. She'll be going to the "Arthrogryposis Clinic" that day, most likely seen by several Dr's that specialize in different parts of the body, as well as physical and occupational therapists. After that, their findings will be sent to the board and the chief of staff for them to evaluate if they feel Little Lady could benefit from their care (I have very little doubt that they will accept her as a patient for continued care after that appointment.)
Between this, and her new Ortho appt coming up, I feel as if things are beginning to move forward for us at last. I have Hope!
Between this, and her new Ortho appt coming up, I feel as if things are beginning to move forward for us at last. I have Hope!
Monday, January 10, 2011
New Orthopedic Dr
Yes! Little Lady goes to see her new Orthopedic Dr on the afternoon of the 24th!
It is my understanding that he has (at least) some experience with AMC, so that's a starting point.
So let's *Hope* for a great new Dr!!
It is my understanding that he has (at least) some experience with AMC, so that's a starting point.
So let's *Hope* for a great new Dr!!
Friday, January 7, 2011
Changes in 2011
After A LOT of thought, and debating... we have left the health plan we were with for the past 8 years. They were great with preventive care, and they were really good for all of us when we were "young and healthy", but the minute we started needing specialized care (i.e. Little Lady's condition), it all went down the toilet. And with the group, the physicians you can see are limited to the specific organization. So we were kind of painted into a corner because they were not doing much of anything to help Little Lady.
So, as of the 1st of the year we all have a new health insurance, with a much broader range of physicians and medical offices that we can choose from.
Tuesday we went to meet Little Lady's new pediatrician. That woman is GREAT!! A little quirky, but she sure seems to be getting the job done. After all those months with our former health plan, they were always hesitant to put the diagnosis of AMC (arthrogryposis multiplex congenita) into Little Lady's charts. Mostly for two reasons, it seems. 1) Little Lady doesn't have the most common form of the condition, which is Amyoplasia type, so they couldn't recognize it as well. 2) Her case is mild, so they were kind of writing it off.
So at our appt with the new pediatrician, we addressed all of the issues. The Dr. did not downplay the condition, and did chart it as AMC. So already, we are making progress. She then ordered X-rays so that we could see Little Lady's hips, and hopefully they will no longer be shallow and we can get her out of the Pavlik Harness. Also, the new pediatrician ordered a STAT referral to a new Pediatric Orthopedic doctor. WhoooHooo, the ball is rolling! (today, I got the phone call saying the referral, as well as additional X-rays were already approved. I can call the new medical center on Monday and hopefully get Little Lady's appt with the new Ortho scheduled).
A few things: The new pediatrician (who is not an Orthopedic Dr... just a standard pediatrician) spotted something that two other Ortho Dr's missed at our old health plan. One of these Dr's I asked point blank about this issue and he said "no, it's normal". So on Tuesday, the new pediatrician says "Oh, she has a little bit of a rocker-bottom on her feet, huh?" I was like... "Ummmm... well, the other Dr's failed to catch that. I even asked one about it point blank and he said it was normal."
Anyways "rocker-bottom" means that Little Lady has a vertical talus. Because it can be a problem that may even involve surgery, I'm pretty ticked off that the other Dr's just let that one slide. So already, I have seen that our decision to change insurance plans was the right choice to make.
I am anxious to get in with the new Pediatric Orthopedic Dr. I am hoping that he/she will address all of the issues and concerns with my Little Lady, and not downplay any of them. Her case of AMC may be mild, but as far as I'm concerned, that's all the more reason to GET ON IT with the treatments. Her case is mild, so let's get the best results we can from treatments NOW while she's still young. That way as she gets older, her condition will be less of a problem for her.
So, with the new Ortho Dr, I am hoping to address:
Occupation/Physical therapy
Dynamic Bracing and/or Casting for her knees
Her extended/curved index fingers
Her upper extremity lack of strength (is it shoulders? biceps?)
Vertical Talus
Anything else?....
Also, we have been in the middle of the application process with Shriners Hospitals for Children for a while now. I'm thinking within the next two weeks or so, we should find out when our appointment date is with them. I have big hopes for this... and plan to address all of the same issues from above, with the Dr's here. I am on pins and needles anticipating this, so I hope it happens fast!!
So, as of the 1st of the year we all have a new health insurance, with a much broader range of physicians and medical offices that we can choose from.
Tuesday we went to meet Little Lady's new pediatrician. That woman is GREAT!! A little quirky, but she sure seems to be getting the job done. After all those months with our former health plan, they were always hesitant to put the diagnosis of AMC (arthrogryposis multiplex congenita) into Little Lady's charts. Mostly for two reasons, it seems. 1) Little Lady doesn't have the most common form of the condition, which is Amyoplasia type, so they couldn't recognize it as well. 2) Her case is mild, so they were kind of writing it off.
So at our appt with the new pediatrician, we addressed all of the issues. The Dr. did not downplay the condition, and did chart it as AMC. So already, we are making progress. She then ordered X-rays so that we could see Little Lady's hips, and hopefully they will no longer be shallow and we can get her out of the Pavlik Harness. Also, the new pediatrician ordered a STAT referral to a new Pediatric Orthopedic doctor. WhoooHooo, the ball is rolling! (today, I got the phone call saying the referral, as well as additional X-rays were already approved. I can call the new medical center on Monday and hopefully get Little Lady's appt with the new Ortho scheduled).
A few things: The new pediatrician (who is not an Orthopedic Dr... just a standard pediatrician) spotted something that two other Ortho Dr's missed at our old health plan. One of these Dr's I asked point blank about this issue and he said "no, it's normal". So on Tuesday, the new pediatrician says "Oh, she has a little bit of a rocker-bottom on her feet, huh?" I was like... "Ummmm... well, the other Dr's failed to catch that. I even asked one about it point blank and he said it was normal."
Anyways "rocker-bottom" means that Little Lady has a vertical talus. Because it can be a problem that may even involve surgery, I'm pretty ticked off that the other Dr's just let that one slide. So already, I have seen that our decision to change insurance plans was the right choice to make.
I am anxious to get in with the new Pediatric Orthopedic Dr. I am hoping that he/she will address all of the issues and concerns with my Little Lady, and not downplay any of them. Her case of AMC may be mild, but as far as I'm concerned, that's all the more reason to GET ON IT with the treatments. Her case is mild, so let's get the best results we can from treatments NOW while she's still young. That way as she gets older, her condition will be less of a problem for her.
So, with the new Ortho Dr, I am hoping to address:
Occupation/Physical therapy
Dynamic Bracing and/or Casting for her knees
Her extended/curved index fingers
Her upper extremity lack of strength (is it shoulders? biceps?)
Vertical Talus
Anything else?....
Also, we have been in the middle of the application process with Shriners Hospitals for Children for a while now. I'm thinking within the next two weeks or so, we should find out when our appointment date is with them. I have big hopes for this... and plan to address all of the same issues from above, with the Dr's here. I am on pins and needles anticipating this, so I hope it happens fast!!
Monday, December 20, 2010
For a pick-me-up
On days when Little Lady's situation has me sitting around feeling sorry for us... I like to read this comment that a friend of mine left on my Facebook page:
I want to meet this "Little Lady". I have a feeling her name is gonna fool everyone - she might be sweet and soft and full of love but I think this "Little Lady" is gonna have fight and passion in her - no one is gonna expect it - and that's the beauty of it, she'll catch everyone off guard... and she's gonna make a difference in her world =) just wait
(Of course, my friend used Little Lady's real name, and not the alias I use for the blog, LOL!)
I want to meet this "Little Lady". I have a feeling her name is gonna fool everyone - she might be sweet and soft and full of love but I think this "Little Lady" is gonna have fight and passion in her - no one is gonna expect it - and that's the beauty of it, she'll catch everyone off guard... and she's gonna make a difference in her world =) just wait
(Of course, my friend used Little Lady's real name, and not the alias I use for the blog, LOL!)
Tuesday, December 14, 2010
*sigh*
Haven't updated on Little Lady in quite some time. Anyways... after my previous post about Knots in my stomach, it turns out they were warranted. Little Lady had an X-ray done that morning prior to her orthopedic appointment and the image showed her hips to still be shallow. So, my poor Little Lady has been, once again, ordered to stay in the Pavlik Harness in order to treat her hips.
I don't know how long she'll have to be in it, but the Ortho wants to see her again in January, so I just pray that we will have a GOOD X-ray at that time.
Since my last update she's also had an occupation therapy appointment, and I've been carrying on with her therapy at home daily. Her torticollis is doing so well that her regular pediatrician couldn't even see it at her last well-baby check up!
There are other things in the works, but nothing solid at this point. I'm just trying to see what I can do to help her. To be her advocate for good treatments. Also, I'm considering a change in our insurance plan next month when the open enrollment period happens. With our current insurance, we are locked in to one group for care, and there's only one Ortho for us to choose from. Honestly, I'm not happy with the care we're getting from said Ortho, so I don't see much option... We'll see where the road leads us.
I don't know how long she'll have to be in it, but the Ortho wants to see her again in January, so I just pray that we will have a GOOD X-ray at that time.
Since my last update she's also had an occupation therapy appointment, and I've been carrying on with her therapy at home daily. Her torticollis is doing so well that her regular pediatrician couldn't even see it at her last well-baby check up!
There are other things in the works, but nothing solid at this point. I'm just trying to see what I can do to help her. To be her advocate for good treatments. Also, I'm considering a change in our insurance plan next month when the open enrollment period happens. With our current insurance, we are locked in to one group for care, and there's only one Ortho for us to choose from. Honestly, I'm not happy with the care we're getting from said Ortho, so I don't see much option... We'll see where the road leads us.
Subscribe to:
Posts (Atom)