What Did I Do to Deserve This????

When I look at Little Lady, I think to myself "Why did God give this to me? What did I do to deserve this?". 

But not in the way others might think. I don't see what's "wrong" with her. I don't feel sad that she was born "different". I think "Why did God see me WORTHY of this amazing blessing? What did I do to deserve such a wonderful source of constant joy?" This little girl, and everything she brings with her, has completed my heart. 

In the words of my friend Peg, Little Lady's DiffAbility is The Sweetest Gift. I feel so honored to be a part of this elite group of people and their families. SUCH JOY! 

I hope that nobody ever see's my daughter in her splints or braces and thinks "poor little girl". Or see's a harried Mother running to appointments and thinks "That poor lady". We are not poor. We are rich. We have more joy in one day than most people can have in a lifetime. I am not poor. My daughter is not poor. 

Who would have thought?

Time Flies When You're... BUSY!

Shame, SHAME on me for neglecting my sweet Little Lady's blog. And with so much going on no less!
Anyways, in my last real update, Little Lady had finally gotten approval to begin therapy with CCS . She has been receiving Occupational Therapy (which focus's on ADL's, or Activities of Daily Living. Such as feeding, getting dressed, brushing teeth, etc.) and also Physical Therapy (which focus's more on gross motor skills and strength, endurance, etc. Such as sitting, walking, crawling, standing.) OT and PT overlap each other in some area's.
The therapy services Little Lady has been provided have been an invaluable asset to her development. She is growing, getting stronger, and improving EVERY DAY! She has come so far in the last 6 months.
(As much of a hassle as it is going to therapy so often, I try to always remember how much worse it felt when she wasn't getting any help at all.)
Now, she's doing this:

 And this:

And This:

And even starting to do THIS!!!!!:

So I guess... Therapy isn't as bad as this:

Easter Bunny

It appears that the Easter Bunny has brought Little Lady her first tooth. Yikes!

Small Victory

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!!!

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.

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!

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!!

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!!