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!
Monday, January 17, 2011
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.
Wednesday, November 17, 2010
Knots
OK, I know this is Little Lady's story... but it's being told from MY perspective, so I guess it's my story too.
Anyways, why is it that every time Little Lady has an Orthopedic appt. I get knots in my stomach? I get so nervous and on edge. I wish that I had a Dr for her that was so great, that I felt totally at ease taking her in each time. Maybe soon. HOPEFULLY soon.
Today she goes in to see her lame Ortho (who I have very minimal faith in). Before she see's Dr, she's getting X-ray's. On one hand, I'm relieved about this because I was sure that I was going to have to ask for them myself. Also, I'm curious about what they might see. On the other hand... I'm super nervous that they are going to tell me that Little Lady still has hip dysplasia. Also, I'm still not seeing too much more improvement in her knees (since about 6 weeks old. She's 4 months now) and I'm doubting the Ortho will do casting. AND today I have to tell this Dr that I believe Little Lady has a problem with her arms or shoulders. And of course, I have a feeling this Dr will disregard what I say, or dismiss it as nothing. Because she's the Dr. and I'm not. After all, I didn't go to medical school. (this is the attitude she puts off). However... I do spend 24 hours a day with her, while this Dr see's her once a month for 15 minutes.
*sigh*
We'll see... Hope for the best.
Anyways, why is it that every time Little Lady has an Orthopedic appt. I get knots in my stomach? I get so nervous and on edge. I wish that I had a Dr for her that was so great, that I felt totally at ease taking her in each time. Maybe soon. HOPEFULLY soon.
Today she goes in to see her lame Ortho (who I have very minimal faith in). Before she see's Dr, she's getting X-ray's. On one hand, I'm relieved about this because I was sure that I was going to have to ask for them myself. Also, I'm curious about what they might see. On the other hand... I'm super nervous that they are going to tell me that Little Lady still has hip dysplasia. Also, I'm still not seeing too much more improvement in her knees (since about 6 weeks old. She's 4 months now) and I'm doubting the Ortho will do casting. AND today I have to tell this Dr that I believe Little Lady has a problem with her arms or shoulders. And of course, I have a feeling this Dr will disregard what I say, or dismiss it as nothing. Because she's the Dr. and I'm not. After all, I didn't go to medical school. (this is the attitude she puts off). However... I do spend 24 hours a day with her, while this Dr see's her once a month for 15 minutes.
*sigh*
We'll see... Hope for the best.
Wednesday, November 3, 2010
Little Lady Goes to the Big City and other updates....
Since my last update, Little Lady has had two OT appts. They have gone well, and I have learned a few new stretching techniques to do with her at home. She is making (slow) progress with her Torticollis. She has really tight shoulder muscles too, so that's not helping our tummy time. She wont push up with her arms, no matter how often I put her down on her tummy. I keep giving her lots of tummy time, because even though she's not doing much in the way of lifting her head and using her arms, at least it takes some pressure off of that soft little head of hers. I'd sure like to avoid a helmet later on if I can help it!
We are continuing with the Chiropractic care as well. I'm hoping that will help expedite the process of healing the Torticollis, as well as helping with her GERD.
And also, Little Lady went to the Big City for our 2nd opinion appt.
The facility we went to was GIGANTIC! We had a very nice Dr. While he didn't tell us much different than we already have been told, he actually took the time to answer questions without making me feel as if I were being rushed out the door. He did say that it was ok for us to completely eliminate the Pavlik Harness (YAY!!!) as it was doing nothing for her knees. If her hips are fine (according to Radiologist, they are) then there is not need to keep her in it at all. He did not feel the need to do serial casting on her knees though. I think I'm going to have a hard time finding a Dr. that will do this. But I'm just NOT seeing any improvement in her knees anymore. They got looser from birth to about 6 weeks. And since then, they just seem the same. The Dr. did note that she has Metatarsus Adductus in her right foot though. I guess it's not a big deal. It is NOT clubfoot. It is my understanding, that it often resolves itself with no treatment.
So, anyways, that's the recap, for now. Basically, still at a standstill. It's so frustrating sometimes.
Next week, Little Lady goes back for another OT appt. on Monday. The following week, she has another Orthopedics appt. I don't have high expectations for that one...
We are continuing with the Chiropractic care as well. I'm hoping that will help expedite the process of healing the Torticollis, as well as helping with her GERD.
And also, Little Lady went to the Big City for our 2nd opinion appt.
So, anyways, that's the recap, for now. Basically, still at a standstill. It's so frustrating sometimes.
Next week, Little Lady goes back for another OT appt. on Monday. The following week, she has another Orthopedics appt. I don't have high expectations for that one...
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