A few months ago the Dr that does Beckett's Botox shots told us she thought Beckett may be a candidate for surgery to get rid of all the muscle tightness in Beckett's right leg. This surgery would take the place of him having to get Botox injections in his legs every 3 months. It would be a permanent solution that works much better than Botox.
Sounds interesting. The catch?
This surgery (called Rhizotomy) is done by removing anywhere from 1-5 vertebrae from the spine & then cutting several of the abnormal nerves that run from the spinal cord to the legs. It's a big deal...huge. Not really what we wanted to hear but we also hate doing the botox injections, it's traumatic & they don't really make a huge difference in his right leg.
So we agreed to think about it. We researched & prayed & discussed it. And we decided to meet with a Neurosurgeon at Vandy to see what he thought & see if this surgery would even be a good option for Beckett.
So we met with the surgeon and his team of physical therapists & they agreed that Beckett should have the surgery.
We have done a lot of research (& so has Michelle, Beckett's Physical Therapist!) and it does seem like this is the best option for us. If the muscles in Beckett's right leg continue to stay so tight they can eventually pull his hip out of alignment &/or cause joint damage that would have to be surgically repaired anyway.
And even though operating on someone's spinal cord is always risky, there have been very few cases of paralysis or other bad outcomes. The worst side effect is weakness right after the surgery since the tone, or increased tightness, is finally gone. Because of the weakness it is required that patients go into intensive Physical Therapy after surgery to help strengthen the muscles & work on proper alignment & technique.
The intensive PT part could be done at EuroPeds (the therapy center in Michigan that we have been fundraising to send Beckett to). I've talked to the therapists there and they see lots of kids after Rhizotomy and have had good results.
So the other issue is that if we are going to go through with this surgery we want the best doctor who has done the most of these operations. And that is Dr Park in St. Louis. We are in the process of getting an appointment with him so he can evaluate Beckett & see if he could do the operation. If so, we would be traveling to St Louis for surgery & then to Michigan a little later for 2 weeks of therapy.
So needless to say we have had to adjust our fundraising goal! Hopefully (fingers crossed), insurance will pay for a majority of the surgery but we will still have to cover for what they don't pay plus taking time off work, hotel & travel, food, and then all of the therapy afterwards.
But we are lucky to have such great family & friends who have already been a huge help & have been brainstorming new fundraising ideas! So pray for us, that we will be able to put aside all the stress & worry about this operation and make an informed decision as to what would truly be best for Beckett. And if you are able you can donate by clicking on the donate box to the right of the screen or at the top.
You can read more about the surgery if you click the link above (Dr. Park...), their website is very good.
Patrick & I would also like to say a huge THANK YOU & BLESS YOU!!! to everyone who donated in memory of Patrick's uncle, Gerry Wayne Konig, last week. Gerry Wayne passed away last Wednesday and his amazing family asked that donations be made to Beckett's fund in lieu of flowers. I'm so glad that Gerry Wayne was able to come to Beckett's birthday party a few weeks ago, he was so sweet and we will all miss him.
Momma's boy moment...
But just for a moment because he is all about Daddy!
