This will only be Jocelyn's second Botox injections this year as that last injections caused MAJOR overall weakness which lasted for several months.
NOOOOO BUENO!
Since it is Fall/Winter, the upper chest areas and the like, are avoided until Spring/Summer. This time around we will again be heavy-loading her hips and legs as these seem to be a major problem.
We were surprised how much interest Dr. Gupta took in Jocelyn's hips this time considering I continuously express my concern and even decided to get a second opinion regarding this matter.
I can tell that Jocelyn's hips are progressively worsening as our typical therapies seem more difficult and painful to perform. Her hips truly do effect everything. The way she stands, crawls, sits, moves her arms ... everything.
Dr. Gupta wanted to get new x-rays which we of course did. As I already knew, her hips look fairly well when she is ring-sitting and they nicely set into the hip socket. When her legs are out straight, they are more than 50% dislocated and rotated outwards.
It was discussed that by Summer 2014 or 2015, we would have to do one of two surgeries.
The two surgeries that were discussed were a femoral valgus derotation osteotomy and a hip replacement. Hopefully I'm using the correct terminology. I thoroughly understand, but sometimes not the nitty-gritty stuff. Which to be honest, I don't need too. :P
These surgeries would not be performed at the same time, but more than likely, one of them will need to be performed within the next year or two.
The surgery that was discussed to be completed first, was the distal valgus derotation which would be right below the head of the femur.
Currently, even with heavy Botox, her knees/legs continually face laterally (they point outwardly) which is often coined at "cowboying" because the legs resembles that of a cowboy riding a horse. Its nearly impossible to walk, and definitely not far, with your leg(s) in this position. Even trying to get Jocelyn to sit-to-stand would more than likely be greatly improved with her legs/knees actually facing forward. I'm constantly attempting to align her legs with no avail.
However, the crappy thing about this surgery, is that it probably will help with function, but ultimately it will not correct the hips themselves.
What does this mean? It means that later, the hip joints themselves, will still need to be corrected, but perhaps later in life when Jocelyn is older.
If hip surgery can be prolonged to 8-10 years-old, the chances of having to perform the surgery again drops to nearly zero. That is of course what we would want. Again, there is no guarantee since the brain keeps telling the muscles the wrong thing to do, firing and pulling on bone when that's not what is desired, etc.
Its always important to remember that fixing structural things does not stop the brain from making the body do what we don't want. Sucks ... but true! However, by attempting to improve function, we can sometimes outsmart the brain.
Performing the derotational surgery was discussed because we could easily do a hip replacement and make Jocelyn's x-rays "look better," but what we want to improved is FUNCTION first. I could care less about how something "looks."
We will continue to monitor Jocelyn and make our best educated decision, but she can be weight-bearing with this surgery, as tolerated, almost immediately. With correct alignment, she very well may be able to acquire/finish certain skill sets like crawling because her knees will be under her and not out to the side, sit-to-stand unassisted because she can get up over herself and so on.
I don't really care if her hips look better per say, the whole goal of doing anything we do, is to improve function, comfort ... did I say function? :)
Dr. Gupta took the time to discuss research about both things ... supporting and non-supporting ... he openly expressed that many people would disagree with his approach, and that Children's and Shiners alike, would immediately recommend a traditional proximal hip replacement (just for those who don't know, this is where the neck of the femur is cut off and replaced with hardware that is more anatomically correct). Since Jocelyn wasn't wear-bearing when younger, despite all that we tried, the stem never bent to the typical degree needed which is one of the reasons her hips slides in/out of the pelvic socket.
Sadly, this is the other surgery that is more than likely going to occur in the next few years.
If there is no improvement motor-wise, often times the rationalization the doctor/provider gives is "Well, their condition was apparently too severe." Although true, sometimes waiting or trying something different FIRST, can greatly improve situations.
I find this to be true even with people that we see. Many say "With Jocelyn's diagnosis, often times certain things can not be achieved." That may be true, but as Dr. Gupta put it, if he were to give Jocelyn's diagnosis (Grade IV brain bleed/spastic quad CP) to his peers, show them a picture of her when she was around 6 months-old and asked them their predictions of where they would think she's at now or would be in the future, none of them would have speculated that she would have attained the abilities that she has thus far.
Again, its sad that this is a reality, but true. I can feel people's "assumptions" about Jocelyn all the time.
She is improving ... slowly but surely.
Its hard to know which surgery to do. None, all of them, when to do them, what can/could happen, etc. Either way, if nothing else, Jocie's hips will eventually be needed.
Its exhausting.
And Jocie's been through enough.
I don't want to have to do ANYTHING else.
More surgeries, more scars, more therapy, more sweat and tears. Its draining, its hard on the heart, but I'm always fight for Jocelyn to have the chance to succeed. That's all I want. The opportunity.
Both surgeries have their pros and cons. Potential gains or set-backs. Over the next year or two, we will have to hone in on which of the two surgeries to do first ... maybe only one. Nevertheless, I appreciate the knowledge and options given.
I did watch a few videos ... can't seem to help myself.
I've watched shunt placements, eye surgeries, g-tube sugeries, etc ... suppose I simply have to KNOW what it entails.
I've already seen a real hip replacement while in practice, but never a rotational surgery.
If you're squeamish, don't watch, but pretty interesting.
Jocie's leg(s) would be rotated INWARD
I probably should not watch this stuff. Makes my heart hurt for her :(
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