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!!
Monday, January 3, 2011
Saturday, November 20, 2010
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!
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!
Wednesday, September 22, 2010
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!
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!
Thursday, July 29, 2010
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!
Wednesday, July 28, 2010
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!!!
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!!!
Thursday, July 1, 2010
What a week! - April 25, 2010
Not only did Jake turn 3 this week, he also started school. Yep, the day after his birthday, he started at the Early Childhood school in our district. He is a natural!!! On the first day, he drove himself right to his classroom. I think he was wondering why the Mom’s were even at school on that first day! He handled his power chair like a pro and was completely exhausted at the end of the day...I would be too! He goes every afternoon for about 2 & 1/2 hours not including the bus ride to and from. The first day on the bus went really well considering he has never taken his chair on a lift or ramp of any sort. The lift got him a little upset but once he figured out what was going on and that it really wasn’t all that scary he was fine. The Mom’s survived the day too!
1 Comment 
Yay!! The pics of Jake on this first school day are too adorable. How cool is this little guy?! Thanks for sharing with all this fans.
Tuesday, May 4, 2010 - 11:27 AM
Jake turns 3 - April 19, 2010
Wow, it’s been a LONG time since we’ve updated the blog. Too much going on but all good. Today is Jake’s 3rd birthday! Unbelievable!!!
In February we went to Ft. Myers Beach, FL to visit my (Betsy’s) parents. While we were there, not only did we get Jake potty trained but he got to sit and play in the ocean. The weather was a tad on the chilly side but Jake didn’t care, he would’ve stayed in the ocean ALL day if we would have let him!!
Tomorrow, Jake starts school. He’ll go to the Conyers Learning Academy in Palatine. He’ll take the bus in his powerchair (just a loner chair for now) to the afternoon session of school. I don’t think either of us could have anticipated how quickly this day crept up on us! He’s going to do fantastic at school, we expect that he will really flourish.
Nothing new to report on the medical front. He still has the g-tube and we work on feeding daily. He’s speech is coming along but at school he’ll use a DynaVox Augmentive Communication Device with EyeGaze to communicate. It’s a pretty slick device...basically a computer that he controls with his eyes.
We’ve aslo been working on getting him to stand independently. That’s a SLOW process if ever there was one. Nonetheless...we’re trying, it’s ultimately for his own good.
5 Comments
I can't believe he's 3 already!
Tuesday, April 20, 2010 - 05:31 PM
WOW! I can't believe he is 3 already. You guys are doing such a great job with his progress. How cool that he has a power chair. The Dynavox is a great communication tool for his age level.
You know many "average" 3 year olds aren't potty trained yet....very impressive!
Thanks for keeping me "in the loop".
You know many "average" 3 year olds aren't potty trained yet....very impressive!
Thanks for keeping me "in the loop".
Tuesday, April 20, 2010 - 06:01 PM
Starting school! What a wonderful thing for Jake. I know he'll love it. You had better take loads of pictures.
Tuesday, April 20, 2010 - 11:23 PM
Wow! Time really goes by fast. I can't believe Jake is 3 and starting school. Thanks for the update.
Sharon
Sharon
Wednesday, April 21, 2010 - 02:29 PM
I saw him on facebook in his chair. It is so cool. He turned and navigated so well! I can't believe he is already going to school. Amazing. He could not have two better parents. Keep us posted with plenty of school pics. Much love, Great Aunt Chris
Friday, April 23, 2010 - 05:13 PM
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