OK, so the week of Christmas Savannah had a follow-up appt with her Pediatric Rehabilitation Doctor. We discussed more in depth about her Cerebral Palsy and what was to be in the long term. We got some news that will require lots of prayer and hard decisions on mine and Daniels part. (and of course prayer from all of you) At the first visit we were told that Savannah has mild Cerebral Palsy in her legs. What that means is that her hamstrings are tighter than they should be and her heel cords are slightly tighter than normal. We were told that she would more than likely be able to walk on her own but may or may not require some small assistance. Well we took that as, OK great...braces on her legs to help with the tip toes and Physical therapy every two weeks like she has been getting. Plus tons and tons of stretching and practicing on our part. That's what we are looking at. Well turns out that even though she is considered mild, she will still require surgery. The way it was explained to us is when a child with Cerebral Palsy (CP) grows they get to a point where stretching and bracing doesn't really help any longer. So if you do nothing her bones will start to become deformed from not being in the correct form and she will lose her mobility. So its not a matter of IF she will have surgery because she WILL have surgery. Now it is just a matter of when and that is where the prayers and hard decisions come in. You see there are two types of surgeries.
One surgery is one that not every CP patient is a candidate for but she almost positively would be. 5 doctors have to consult about it and all 5 doctors have to agree 100% that she is a good candidate for it. If one so much as hesitates then she can't have this particular surgery. It is called Selective Dorsal Rhizotomy. It is a permanent fix. It could mean she would only have one surgery for the rest of her life. It could, if it works to its fullest potential, take away almost all symptoms of her CP. It would be done soon...like when she is 2. Sounds great right? So what is so hard about choosing this one? Well the surgery is performed on the spinal cord by a neurosurgeon. Several nerves are cut. She would be in the ICU after. And there is potential for loss of bladder function and paralysis.
The second surgery would not be performed until she is closer to 5.(or at least that is the age we would shoot for.) She would HAVE to receive Botox injections (which scare me on a whole different level since they are not approved by the FDA for this purpose) every 6 months until then to keep her muscles loose and these are very painful. This surgery would involve going in and cutting the tendons and lengthening them. She would be in casts for weeks after and then would have to go through extensive Physical Therapy to learn how to walk again. This surgery may or may not be permanent. She could have to have the same surgery again a few years later as she grows more. (She is more likely to need more surgeries the earlier she has the surgery).I guess I should also explain my concerns with Botox. When I researched it, I found that it was not approved by the FDA for patients with CP and that there have been several deaths that have occurred when used for this reason. When given to these patients, since given in such high doses, it can travel to other parts of the body causing a condition similar to Botulism which causes hospitalization and sometimes death. I further learned that all of the patients were CP patients with upper extremities affected so the Botox was administered near the heart. I have since talked with the doctor and he said it has never happened to a CP patient who was just affected in the legs and Savannah would not even be a candidate for this to happen to. I, however, am still very scared of it.
So here lies the dilemma. Do we subject her to such a risky surgery to try to keep her from having multiple surgeries and tons of Botox injections and potentially "cure" her symptoms or do we play it safe and put her through all the painful shots and surgeries and castings and therapies so that we don't risk complete paralysis. I am absolutely scared to death of making the wrong decision. I mean this is the rest of her life we are talking about. Daniel and I have been struggling with this since we went to this appt. and we are just at a loss right now. Please be in prayer for us that we make the best decision for her.
On a brighter note, She is coming along fantastically. She is now pulling to a standing position on everything and she can walk behind her stroller toy. So I have no doubt that she could walk with a walker or canes right now. Our goal is to get her to walking with just braces before either of the surgeries for the best outcome on either one. The less assistance she needs going into the surgeries the better!
Here is a video of her walking with her stroller toy.
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