Holy Cow!!!

I can't believe we haven't posted anything for about a year.  I guess my little tryst with breast cancer took all our attention!!!

After our very action-packed trip to AI DuPont to see Reenee and Marnie, we had our work cut out for us.  We got HKAFO's (hip-knee-ankle-foot-orthotics)

made for Jake because the RGO's

were just too heavy and cumbersome for him.  We actually wound up donating them to a family for whom they were PERFECT!!!!  Anyway, Jake has spent the last year working on standing and, much more difficultly (is that a word?!?) walking.  He had the motion just not the right gait.

In March, Jake had the 8-plate surgery (see image below).  Very painful, even to this day!  He had the plates put on the top of his femurs.  They'll stay in for 18-24 months.  Honestly, I'll be glad when he's not so apprehensive about his knees bending!!!

 

Fast forward to yesterday, August 28, 2012.  Jake WALKED...yes, I said WALKED in to the before school program on his first day of Kindergarten!!!  I don't know if you could find prouder parents anywhere on earth yesterday morning!!!  His new teacher is great, really, absolutely perfect for him!  His 1:1 is a family friend who is amazing!!!  This is gonna be a great year!!!  We're going today to get new HKAFO's made and we heading for taking the pelvic band off when he's walking. 

So, suffice it to day that it's been an AMAZING year!  The AMC Conference was great, Jake made SEVERAL new friends who he's STILL talking about!!!  Thanks for all the love, good vibes, support, and good thoughts!

A.I. DuPont Hospital for Children

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.

Casts off!

After almost 6 weeks in long leg casts, Jake got them off yesterday.  While this is a HUGE step in the right direction, he was and still is not a happy camper.  His little legs are sooooo tender and sensitive.  Hopefully the pain will subside quickly.  He looks great in his walker and his feet have never been in a better position.  Lots of work to be done but the outcome should be a walking Jake!!!

Upcoming surgery

Jake is scheduled for surgery this coming Friday, the 25th.  It was originally set for March 10th but his orthopedic surgeon got hit with pneumonia!!!  This time, it's a biggie.  He's having the tendons behind his knees lengthened, his left tibia derotated (yes, that's a real word!) and he's having osteomtomies on both legs which will give his feet more room to be in 90 degrees to facilitate walking/standing.  I think we both have a better feeling about the new date.  Jake has been on a coughing bender for the last couple weeks.  That being said, he's healthy!!!  We don't have a reason for this most recent bout which is different than past coughing episodes.  Usually, it's a sinus or ear infection.  Not this time, everything looks good.  Kinda hoping (if you can hope for such a thing) that it's allergies.  After he's out of the long leg casts from surgery we'll get him back to see the allergist. 

He's been making good progress with his RGO's (reciprocating gait orthotics) and his walker that he's had since Christmas.  Right now though, he's grown so much that ALL of his orthotics need to be re-done!!!  At school he's gotten a KidWalk so he can be upright there too.  Headed in the right direction.  With this surgery he should be much closer to being a walker!!!

Thanks for all the continued love, prayers, and support.  It means the world to us!

Gait Trainer

We FINALLY got it!!!  Jake is now the proud owner of his very own Crocodile Gait Trainer!!!  He wears his RGO's when he's in it.  For now, he only takes a few steps at a time but he REALLY like being in it.  When we were picking it up and adjusting everything on it, Jake looked up at me, looked at the crocodile and said, "Mommy, I walk"....yes, it was a special moment!  We're still working on his muscles but we're quite confident that he will be a walker.

On other fronts, Jake got baptized on December 12, 2010.  His fan club was there and given the fact that he was THE center of attention, he did great!  We're still fighting off his cough but things are moving in the right direction.  Thanks for all the good thoughts, love, prayers and positive vibes!!

Busy, busy, busy

Yep, things have been busy!  Jake goes to school - the morning session - everyday.  It's 2.5 hours plus the bus ride...which is his FAVORITE!!!  At school he's really engaged and doing great.  He gets Speech, OT & PT both in an out of school so his schedule is crazier than ever.  And...he loves cruising around in his powerchair.  Now that we have our inflatable turkey up in front of the house, he stops in front of the turkey when he gets off the bus to say hi.

Over the last month and a half or so, Jake has had a series of ear "infections", sinus infections and colds.  Unfortunately, we believe it's all due to his craniofacial structure.  He had a full head CT about a month ago and we're anxiously awaiting the results from the doc.  In the meantime, Jake had his second dentist appointment.  That appointment could turn out to be extremely pivotal.  While taking pictures in Jake's mouth, the dentist has given us visual confirmation of a cleft in his palate.  Up to this point, the docs were 3 to 2 (yes, we've had 5 different opinions!) against a cleft.  Now that we KNOW that there's some kind of hole, we can get moving on repairing it.  The location of the cleft is most likely playing a BIG role in Jake's continuous sinus issues.  So, this is HUGE!!!

On other fronts, Jake has been using his RGO's everyday and with assistance, is taking steps.  We've gone through the walker evaluation (and he's be doing a trial at school of the KidWalk).  And, we've ordered a walker for him...now just waiting for it to get approved and delivered!  As for the KidWalk, we have to help the school district decide if it's a worthwhile purchase.  He does great in it when he's on tile, hardwood or anything but carpet.  The catch is, in his classroom, it's mostly carpet and they do spend a good deal of time on the floor!  Decisions, decisions!!!

We've officially joined the Congregational United Church of Christ of Arlington Heights and are finally going to get Jake baptized...better late than never!  It's such an amazing congregation, we're so happy to have found it!

That's all for now!  Happy Thanksgiving to one and all!

The road to walking!

A few months ago, Jake got RGO's (reciprocating gait orthotics).  The RGO's are kinda big but what they help him do is AWESOME!!!  He can stay standing on his own...once we stand him up...and with some assistance, he can take steps!!!  It's so great to see this kind of progress.  Now, we have to figure out which walker will be best for him to use.  We've gone to Shriner's and tried the Crocodile which worked really well.  Today we're going to RIC to try at least one or two others.  It's more about determining which arm configuration will work more than the walker itself.  We're obviously looking for a walker that is easily portable, relatively lightweight,  and has nice wheels that will take to being off the sidewalk.  Jake does enjoy "off-roading"!!! At school we're also going to do a trial with the KidWalk so that we have all our bases covered.

Jake started school the day after his 3rd birthday in April.  It has been the best thing for him!  His speech has improved leaps and bounds.  He's putting sentences together and we can understand most of what he says.  Lately, most things have been focused on Buzz Lightyear and flying!  Typical boy!

That's all for now!