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!

Vacation!!!!

Tomorrow we leave for DisneyWorld!!!  The 5th Annual AMC Convention is holding it's anniversary convention at the Grand Floridian next Wednesday-Saturday.  We've decided to drive down and stay at Fort Wilderness, Disney's excellent campground.  It's cheaper, and, to us, more fun to go camping!!!  Jake is psyched!  He can't wait to see Mickey and Buzz Lightyear.  We'll definitely be putting up pics so stay tuned!

Moved the blog

Well, if you're reading this, you know we moved the blog!!!  It became too much of a hassle to update the blog just from our home computer so we moved it to blogger.

Took Jake to his plastic surgeon yesterday.  He'll have surgery to start fixing up his nose this fall.  They'll have to do a bone graft because there is no bone where the cleft was!  Maybe that will help ease some of his congestion.  Probably not, but maybe.  It'll help in the long run with orthodontics and such.  Anything we can get accomplished while he's still young enough not to remember completely, the better!

Anyway, just a quick note to welcome everyone to the new location.  We've moved all the old posts and comments and will be getting the photos up shortly!!!