Wow, I can't believe I haven't updated since we got back from the 6th Annual Arthrogryposis Multiplex Congenita Support, Inc. Conference in Kansas City, MO. Jake, my mom (grandma) and I attended. Most unfortunately, Andrea could not get that particular week off work....summer is CRAZY in the university venue meetings & conferences world! It was so great to see our AMC family again. Lots of new faces mixed in with all the regulars! Jake got to race some of the other kids in power wheelchairs which I think might've been his favorite part.
On our last full day there, we were able to spend over an hours with a most amazing PT out of the A.I DuPont Hospital for Children. Reenee works with AMC'ers from all over the country. The best part is that after seeing her, she'll interact with our local PT to determine and plan the best course of treatment for Jake. It was like an answer to our prayers! She spent the time with Jake re-configuring his walker and figuring out how to balance his RGO's. After that brief hour, we knew we had to take a trip to Delaware to see her. Lucky for us....that is coming up quick!
Jake is making good strides in the walking arena. He knows what "shift & kick" means and he totally understands how great it will be to walk. As they say...practice makes perfect. He may not be happy to get into his RGO's (reciprocating gait orthotics) but once he's up on his feet he's fairly happy!
School starts up again next week and this year Jake will only have one adult with him, instead of two. This week we finally lost our nursing coverage. Luckily, we were able to find before and after school care for him very quickly!!! Putting all the negatives aside, this will be really, really good for Jake. He can really assert his independence. His one-to-one assistant at school is a great guy who really took to Jake and the feeling is mutual!!!
As usual, life is as busy as ever in the Gates-Ehlers house but all in all, life is good! Please keep us in your thoughts and prayers as we meet with Reenee and the team in Delaware! And...for those of you playing along at home...I, Betsy, am still working towards finishing my PhD. Hoping to graduate in 2013 and have earned a terminal (it's called that for a reason!) degree.
