Its been a little while since I've passed along an update so I'm sneaking away from the chaos for a few minutes to pass along our latest news...
WOW...what a few months it has been. Our winter has been somewhat odd in nature with having very very little snow (only a few inches) and balmy 30-40 degree temps so we have been pleasantly enjoying the season (of course I still have been counting the weeks til Spring-that won't change). Other than that, its been business as usual with school, work and the various dr's appts.
Speaking of dr's appts, with changing insurance at work and a significant rise in our Out of Pocket costs, we were forced to explore new opportunities in health care resources for Ethan...And I am so glad we did. In February, we again made the enduring trek to Minneapolis (approx 4 hours or so from Fargo); this time bringing the ENTIRE crew for one of Ethan's dr's appts only this time, we went to the Twin Cities Shriners Hospital for Children. What a blessing they proved to be. The entire facility, while small in nature, was huge in heart and soul. They listened to us and while the orthopedic surgeon somewhat agreed with what we have been previously told by our previous Minneapolis physicians, he was open to giving us a choice... orthopedic surgery, partial orthopedic surgery followed by tone management, or tone mgmt followed by ortho surgery. It was up to us and without judgement. Of course we already knew what we needed to do; orthopedic surgery however they wanted us to visit with the neurosurgeon the next day. We had been told she was a somewhat "forward" lady who spoke her mind and didn't take offense to what people returned as a response. On top of it, she was a veteran dr. of approx 35 yrs from the former facility that we had a "not so pleasant" experience with a few months prior. Oh lordy, what was she going to say or do when she read through the files... we still stood our ground though and were intent on surgery without the need for a rhizotomy (surgery where they snip the nerves in ones spine to reduce spacticity). We went the next day, nerves full force. After much waiting, she finally came in... Here we go... She looked at my husband and myself and started by saying... "I have to commend you both for doing EVERYTHING you could have possibly done to help your son"... She then went over a brief history and then asked for Ethan to hop up on the table... after some basic twisting/turning/bending and cruntching... she yelled for a nurse/PT/OT to come... after some quick conversation she determined very openingly that Ethan's tone has pretty much non evident and she wasn't sure what the other's had looked at as she did NOT see where this so called emerging "tone" was. After some discussion with the ortho surgeon, she came back in and stated that Ethan was NOT a candidate for a rhizotomy now nor likely ever...in addition she didn't he would likely even need a baclofen pump. WOW! WOW!! WOW!!! Our jaws pretty much hit the ground. Then for the kicker... "I'm not sure how it all works but those stem cells obviously were successful"... Finally someone took the time to listen and look outside the box. THANK YOU!
Our surgery is now scheduled for May 1st and will include derotations of both Tibia and Femur bones in both legs; hamstring lengthenings along with a couple of other lengthenings and a tendon transfer. The surgery itself will be approx 6 hrs and will require 2 surgeons and a team. We are very excited...especially Ethan as he sees this as a way to finally get on his feet once and for all.
He currently is taking up to 20 steps at a time all by himself so the prospect of him walking full time and all on his own in the near future is sooo very promising. Those New Legs that Work are well on their way!
So that is the new update...I have been absorbing as much as I can but I honestly think as of late "Mommy's Supermom Cape" has developed a gaping hole in it. In turn, prayers would be most appreciated to keep my energy, happiness and hopes & dreams alive as we go through this next chapter of our story.
A continued thanks to you all for following our story & be sure to stay tuned for our next chapter--it can only get better! :-)
Until later...
Lisa
