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!!!

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

Judy

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

Anonymous

I can't believe he's 3 already!

Tuesday, April 20, 2010 - 05:31 PM

sstern

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".

Tuesday, April 20, 2010 - 06:01 PM

Judy Bianco

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

Anonymous

Wow! Time really goes by fast.  I can't believe Jake is 3 and starting school.  Thanks for the update.

Sharon

Wednesday, April 21, 2010 - 02:29 PM

Great Aunt Chris

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

Into the Holidays - December 7, 2009

Well, Thanksgiving has come and gone, the Christmas decorations are up, and Jake has successfully completed another surgery!  On November 5th, Jake had a talectomy.  That’s a surgery where they remove all or part of the talus bone from the foot.  Since have the clubfoot repair over a year ago, Jake’s feet have not strayed from the “ballerina toes” position.  We haven’t been able to get a 90 degree angle between his legs and feet yet, hence the surgery.  So, they did the surgery, positioned his feet in the 90 degree angles, put pins in and casted him for 3 weeks.  The day before Thanksgiving, he went back under, had the casts taken off, pins removed and then got re-casted.  These will stay on for 3 more weeks and will be taken off just in time for Christmas!  Once his feet are free, we’ll hit the stander hard in our continued quest to get Jake standing and ultimately walking.

Last week, Jake underwent another swallow study since he’s now trach-less.  The results were better than last time but still indicated that he has a LONG way to go.  His swallows are now a single event instead of a series of smaller ones, that’s a good thing.  But...he’s not a huge fan of swallowing!  He makes it look like he’s taking stuff into his mouth but in reality, it’s grazing his lips and never getting into his mouth.  We have found, this week, that when he gets to hold the spoon and, in a manner of speaking, feed himself, he actually takes more into his mouth.  A step closer!!!

Other than that, life has been pretty normal!  Looking forward to the holidays and spending time with family and friends.  We hope that everyone has a safe and wonderful Christmas, Hanukkah, of holiday season!  Thanks for all the continued love, prayers, and support!  (new pics are now up!)

3 Comments

Auntie Jo-Ann

Hi Guys
Boy that little guy has really come through out these surgeries etc.  He really is a tough little guy.  Hope this surgery will work on this feet.  Watch out girls he will be running soon!!!!!!Ha!Ha!
Hope you guys have a wonderful Christmas and a very Happy New Year.  Wish I could be there......
Love
Auntie
Jo-Ann

Monday, December 7, 2009 - 03:14 PM

Anonymous

Boy oh boy!  I can't wait to see him run after Boomer & Bailey around the kitchen island over here.  He sure made quick order of it when you were over last!  Always glad to hear of his progress...he is amazing!!! Love to listen to his laugh.
love
Pam & Bill

Monday, December 7, 2009 - 06:47 PM

Aunt Christine

Awesome!  I just can't wait  for him to make his first steps.  I just know he can.

Monday, December 7, 2009 - 08:52 PM

Been a long week - August 21, 2009

This week started off pretty good.  We brought Jake in to Children’s on Monday to have surgery to close the tracheal fistula (stoma/hole).  It was the first time for surgery without the trach.  The anesthesiologist came and talked to us, said he was going to do a fiber optic intubation instead of the typical laryngoscope.  Surgery went just fine, intubation was fine.  We stayed overnight in the hospital, all three of us.  One of us slept with Jake in the big bed, the other on the oh so comfy chair bed.  He was SUPER congested, it sounded like he had a chest cold in his throat.  YUCK!  He slept on and off, not very restfully but he did get a bit of sleep...we didn’t...two hours max.  I had to go to work on Tuesday, no way around it so off I went, before his ENT (the surgeon) came by for rounds.  Jake’s blood oxygenation levels dipped below the desired level once overnight so the residents were not sure how Dr. B would proceed.  She when she did come by, she thought Jake looked fine and let him (and Andrea) go home.  A BIG thanks to my mom for picking them up from the hospital!!!

Tuesday night he was still congested and after sleeping for about an hour he was wide awake.  He stayed awake until about three when we went back to bed and he slept till morning.  Drea and I didn’t get much more sleep than the previous night so Wednesday was a tough day!  My mom came and stayed with us Wednesday night and she took care of his needs all night.  We were able to get a solid nights sleep...finally.

He was still congested but nothing really new on Thursday.  His nurse said that she noticed his chest retracting (caving in when he was breathing) once or twice...again, at this point nothing to really worry about.  We settled in for the night, finished feeding him and had him ready for bed.  He was drifting off to sleep when he started sounding more and more congested.  We gave him an albuterol nebulizer treatment which helped for a few minutes.  Then, all of a sudden, he started retracting, struggling to breath and looking really uncomfortable.  Then, he threw up all over the place.  The poor dogs got nailed!  He started looking really strained/pained and he lost any/all color in his face.  That’s when we 1) started another nebbie (nebulizer) treatment and 2) called 911.  The paramedics - ambulance and fire truck - were at our house within 3 minutes.  Jake got his first ambulance ride with Andrea in tow.  My mom was on her way and picked me up...thank God...and off to NW Community we went. 

They got him stabilized with a combination of an epinephrine nebbie and a steroid.  He got the steroid AFTER they were able to get the IV started.  For those of you not aware of this arthrogryposis bonus, AMC kids (probably adults too) are notoriously hard to stick.  They have small, squiggily, hard to see and find veins.  UGH!  The two fantastic Peds ER nurses at NW got it in two tries.  So now he’s stabilized and they told us they’d be transporting him to Children’s.  Jake (and Drea) got his second ambulance ride from the burbs into the city.  At this point he was doing much better and I think he actually had a little bit of fun getting a ride in the rig!

Fast forward to today.  He’s been doing really well all day, even clearing some of the congestion by coughing just as he should.  They decided that he should stay another night just to be safe and we are absolutely ok with that!  My mom is heading down to relieve us for the night since we really haven’t slept much this week.  It’s been exhausting but hopefully this will be the worst of it and Jake will be able to go home tomorrow without further troubles!

As usual, we need, want, and appreciate all the love, hugs, kisses, good thoughts, good vibes, and positive energy all of our family and friends send our way.  We couldn’t make it through all of this without it!!!

13 Comments

Anonymous

Gosh what a time the three of you have had in just a few days.  I'm glad Jake is doing better.   He is a tough little guy.

Steroids are not fun to be on but they really make it a lot easier to breath.  I'm glad the ER nurses were able to find his vein in just two sticks. 

I'll continue to keep the three of you in my thoughts and prayers. 

Sharon

Saturday, August 22, 2009 - 11:01 AM

Judy

My prayers and positive energy are being sent to Jake and the mommies.  This must have been so scary for all of you.  Glad to hear Jake is doing better now and I hope this is nothing more than a little "speed bump" as Jake goes forward.
As I've said many times, Jake has such an amazing spirit...and so do you and Drea.  I'll keep you in my preayers.

Love to all, hugs to you & Drea and kisses to Jake,

Judy

Saturday, August 22, 2009 - 11:20 AM

Bruce and Edna

What a terrifying ordeal you guys went through. We are glad to hear that Jake has stabilized. Thank goodness you have Nurse Grandma, Mary Anne, nearby to help.

We continue to pray for Jake and keep all of you in our thoughts and prayers.

Love,

Bruce and Edna

Saturday, August 22, 2009 - 12:33 PM

Anonymous

What a scare!  So glad everything turned out well and hope all are catching up on lost sleep! You three are always in my prayers.
Love, Deb

Saturday, August 22, 2009 - 02:37 PM

Aunt Bernie

Wow.  Poor little guy.  My love and prayers to all of you.

Saturday, August 22, 2009 - 03:12 PM

Anonymous

Thanks for keeping us posted during this very trying time. Your mom is the very best. I am so glad she is there for you three. She is a wonderful mom and an excellent nurse. You two must have been exhausted and very anxious through all of this. I am so relieved that Jake is such a trooper. That little guy comes through so much and you two face each challenge with him with such courage and strength. As always I keep you in my prayers and thoughts and especially hope that you all will one day soon be on the other side of all these surgeries.

Saturday, August 22, 2009 - 07:38 PM

Anonymous

Hello Betsy, Drea and Jake, I forgot to add my name to the above comments. It is I Aunt Chris still sending my love.

Saturday, August 22, 2009 - 07:40 PM

Anonymous

thanks for all the updates. so glad jake is doing better.  hope you are too.  love mama barlo

Sunday, August 23, 2009 - 08:50 PM

Anonymous

My dear Betsy and Andrea and Jake, He will make it thru this You gals are my heroes.  Jake is a hero too.  My thoughts and prayers are always with you.  luv bobbi

Monday, August 24, 2009 - 07:58 AM

Traci

God never gives you more than you can handle.  Jake is with whom he was meant to be with.  I love you both (and Grandma, too!).  You're in my thoughts.

Monday, August 24, 2009 - 09:44 AM

Praise God!

I am so very glad that Jake and you all are doing fine. My prayers are forever with you.
Dolores

Monday, August 24, 2009 - 12:14 PM

Sarah Moyer

Betsy,

You are so positive, and it seems like Jake can really take anything too.  Like mother like son.  :)

Tuesday, August 25, 2009 - 09:42 AM

Auntie Jo-Ann

Hi Guys
This is just a speed bump for Jake.  He is such a tough little Guy.  I know the Almighty is holding Jake tight to help him through all of this.  He is also holding you two tight also to give you the strength to manage all of this.  And for my sister she is a saint all by herself.  I love all of you very much.  Can't wait to see you in a few days.  My prayers will still continue for all of you.
Love
Auntie Jo-Ann

Wednesday, August 26, 2009 - 11:58 AM

Busy Summer - August 10, 2009

Even though it hasn’t felt like summer, we’ve been pretty busy.  Jake’s been doing really well without the trach.  He’s talking up a storm and laughing and singing all the time!

In July we took our first official vacation.  En route to our first AMC convention, we spent a few days in Gettysburg.  Andrea was in history geek heaven!!!  The convention was in Philly and it was awesome.  We got to meet so many new, wonderful AMC people and families.  Jake had a a great time and we were able to talk with other folks dealing with some of the issues we deal with.  The very first night of the convention, Jake got to go in the pool for the first time.  They had a mini-aqua therapy session.  Despite the fact that he couldn’t go any deeper than his tummy, he LOVED it!!!  Next year, the convention is in Orlando...thinking a nice LONG vacation that will include some time in Disney!!!

On the trach note, Jake will be having another surgery next Monday to close the trach stoma (hole) that just isn’t closing the way it should be.  This’ll be the first time with anesthesia without the trach.  Hopefully, this too will be uneventful.  This one will again require an overnight stay which he’s not terribly fond of but it’ll be good in the long run.  The sooner he’s healed up, the sooner he is hitting the pool!!!

Today we got the “big” wheels for Jake’s stander so he’ll be hot-rodding even more now.  The wheels seem really easy to move so this should help give him some independent mobility.  He’s also going to be participating in a power wheelchair study at Shriner’s.  It sounds pretty cool and we’re all about research! 

As always, thanks for all the love, prayers, good thoughts, vibes, energy! 

We’re in the process of switching our main computer from PC to Mac so no pics today!

5 Comments

Anonymous

It's so wonderful to hear all the good things going on for Jake.  He is truly blessed with wonderful and dedicated parents!
Sara

Monday, August 10, 2009 - 10:20 PM

Anonymous

Wow, continue to enjoy hearing about/seeing Jake's progress.
You are AWESOME parents and Jake looks amazing!!!
Nurse Lynda

Tuesday, August 11, 2009 - 09:08 AM

Anonymous

We are so thrilled to hear about the great progress Jake is making. We can't wait for him to fully experience the pool. Thanks for the update.

Love, Bruce and Edna

Tuesday, August 11, 2009 - 04:55 PM

Anonymous

So happy that Jake's doing well! The AMC convention sounds neat- what a great support.  The parents are always the experts! 
    You'll love the Mac.
Deb C

Tuesday, August 11, 2009 - 07:34 PM

Anonymous

Hi Guys!
Wow! Jake is doing good. Now with the big wheels on the stander.  Watch out Mom's!  I can't wait to hear him sing and make sounds.  I love all three of you.
Love
Auntie Jo-Ann

Monday, August 17, 2009 - 11:00 AM

The Day We've Waited For - June 27, 2009

I still can’t believe it’s true, as of June 25, 2009 Jake no longer has the trach!!!  When we went to see his ENT on Monday she said, let’s not wait to take the trach out, let’s do it this week.  We had been tentatively scheduled for next week on the 30th.  So, Wednesday afternoon, we got the call that they definitely had a bed for him and headed down to Children’s.  After getting admitted and everything, the residents came in.  They downsized the trach (which is exactly what it sounds like) and capped it.  He was hooked up to a pulse oximeter to make sure that his blood/oxygen saturation levels remained where they should.  Jake has never slept with the trach capped but I truly don’t think he noticed any difference.  Things went well overnight so his ENT took the trach out in the morning.  Seriously, it was like nothing had happened for him.  We were, of course, out of our minds ecstatic, but Jake was just, well....Jake!  We had to stay another 24 hours to make sure his sat levels held both during the day and overnight.  Needless to say, they did!

We ended this fantastic 3 day event by going to Ravinia to see the Indigio Girls with a great group of people.  It was Jake’s first concert!

Now, we can’t wait for the stoma to completely heal so we can through his little butt in the water!  Aqua therapy here we come!

Thanks to EVERYONE for all the love, prayers, good vibes, and thoughts.  We couldn’t have made it this far without each and every one!

13 Comments

Elise Kloster

That is so exciting! We were at the Ravinia concert on Friday too--though we had no idea what a wonderful event we were celebrating!

Saturday, June 27, 2009 - 08:37 PM

Josh

Wow wow wow!  Ubelievable!  This is such great news, congrats to you guys and to Jake, and what a great way to celebrate!  Very exciting.  and aqua therapy is the best!!!

Saturday, June 27, 2009 - 09:26 PM

Therese

Rock on, Little Jake!

Saturday, June 27, 2009 - 10:34 PM

Anonymous

Mina

Soon he'll be swingin' from vine to vine! RIGHT ON RAMBO!

Sunday, June 28, 2009 - 08:13 AM

Anonymous

I am so happy for you guys.  Jake is a rockstar.  You guys deserve all the good vibes and payers.

cha

Sunday, June 28, 2009 - 09:10 AM

Anonymous

I was so happy to share in the celebration at Ravinia.  Jake is "da man".  It was wonderful to hear his voice, even when he was crying.  He had a great time being the center of attention and all.  More adventures to follow, I'm sure in typical Jake  style, cool as can be.

Love you all,
Judy

Sunday, June 28, 2009 - 11:10 AM

Anonymous

Way to go, Idaho!!! So, so happy for all of you.
Love,
Deb

Sunday, June 28, 2009 - 12:42 PM

grandma

He has the sweetest voice in the world.   He can scream and holler as much as he wants :)

Love
Grandma

Sunday, June 28, 2009 - 08:05 PM

Barbara

Wonderful news!  So glad to hear all is going well

Sunday, June 28, 2009 - 09:08 PM

Auntie Jo-Ann

Well Well!  I had no doubt that he wouldn't sail through taking the trach out.  He really is a tough little guy.  I am so happy for him and you both.  His quality of life has taken a big leap forward for him and you both.  Glad to hear he still his making large improvements every day.
Love
Auntie
Jo-Ann

Monday, June 29, 2009 - 11:06 AM

Aunt Kiki

Hey Ladies, this is so very excited can't wait to see him -- HEAR Him -- Swim with him, fun fun fun.  We are up at the beach house all week -- thinking of you all.  xxxx
aunt kiki
uncle dirk and the entire ehlers brood.

Monday, June 29, 2009 - 01:04 PM

Anonymous

Belated congratulations on this OUTSTANDING news!
All our best,
Julie and Kevin Peters

Wednesday, July 1, 2009 - 02:12 PM

cubdt barlo

i am so happy for  jake and  you.   it has been a long hard road but worth every step of the journey.  my prayers and thoughts are with you all.  love and hugs, mama barlo

Wednesday, July 1, 2009 - 10:22 PM

Nearly there! - June 15, 2009

It’s been a while since we last posted anything!  Life got really hectic for a while but things are settling down again.  Andrea graduated from UIC on Mother’s Day with her BA in Political Science!  This was a HUGE undertaking and and ever HUGE-ER (hee heee) accomplishment.  Now that she doesn’t have to think about school for awhile, I can move ahead on my “terminal” (if it doesn’t kill me it’ll be my last one) degree and hopefully finish and graduate by 2011.

Jake has had a busy time too.  On the day after Mother’s Day, he had surgery to remove a thyroglossal duct cyst that he had in the base of his tongue.  We found out about the cyst rather accidentially when the surgeon from Cincinnati Children’s asked for a 3D CT scan of his head and neck.  So, for the past year, we’ve figured that it’s just a little cyst that has a tendency to get infected and needs to come out before the trach does.  Boy, were we wrong!  The doc who removed it described its size to be about the size of a lens from a pair of glasses!  There’s NO WAY that could not be interfering with things like swallowing.  Now that he’s healed up (it’s really a beautiful scar!) we have to wait about a month for all the swelling to go down.  We go see his regular ENT on June 22 where we’ll hopefully schedule the trach removal!

Jake got his new stander about a month ago and he LOVES it!  Seriously, he stands in it with no complaints for at least an hour at a time, sometimes longer.  This new stander has 4 wheels on it currently and we’ve ordered the “wheelchair” wheels that attach to it as well.  Once the big wheels are on it, Jake will have more balance on the un-level sidewalks and he will hopefully figure out how to move himself…without wiggling like he currently does.

In July we’re going for the first time to the AMC Support Conference.  We’ll finally get to meet all sorts of folks and families who live with arthrogryposis.  We’re all really looking forward to the trip…I think Jake just wants to go to Sesame Place!

As soon as get new pics off the camera, I’ll post some new pics too!

5 Comments

Anonymous

Hi Guys!
I can't believe how big Jake is getting.  He is so cute.  Can't wait for that trach to come..........
Love
Auntie JoAnn

Monday, June 15, 2009 - 09:08 PM

Josh

Thanks for the update Betsy!  Sounds like a stroke of good luck the way they found & removed that cyst, that is sure to be helpful with the swallowing business.  You guys sure are the surgery experts by now, you should get a teaching gig at the medical school!

So glad to hear you will get the chance to go to the AMC support conference!!  What a great opportunity to get to know folks who have some of the same experiences, share stories, find resources, etc!  Very cool, have a blast.

See you some time soon!  Josh & Julie

Tuesday, June 16, 2009 - 07:13 AM

Robert Volck

Thanks for the update Betz!  I lost the link and everything.  I am so glad to see you're all trucking along.  I can't wait to see you all again!

Tuesday, June 16, 2009 - 07:53 AM

YEAH!!!

So glad to hear my little boyfriend is doing GREAT!!!!! I can't wait to see him when you guys get out here!!! And Sesame Place is an awesome place for him to experience in PA.

Luv ya guys,
Jan

Tuesday, June 16, 2009 - 11:48 AM

Anonymous

Nice going Rambo! Must be the Greek blood you inherited from me, that's speeding up your healing. Wait till I give you some Greek food! Then your moms will be upset with me because of all the gas you'll be getting!

Tuesday, June 16, 2009 - 05:57 PM

Time Flies! - April 22, 2009

Can you believe that Jake turned two this past Sunday?!?!?  Seems like just yesterday we were seeing him for the first time!!!  How far we’ve come!  I remember him being this little peanut with a cleft lip and look at him now.  He’s scooting all over the place, getting into things like any other two year old.  Truly amazing!

His next surgery is scheduled for May 11th, the day after Andrea graduates from UIC.  He has to have a cyst removed from the base of his tongue.  After that, we’ll hopefully be able to get the trach out!  That’s the plan anyway.  He starts some intensive therapy on his jaw next week.  It’s got to open wider before the palate can be repaired.  Never a dull moment in this house!

I’ve posted some pics of Jake out in front of the house in his new stander.  We’ve also got the wheelchair type wheels on order that go on the stander.  Once we have those, he’ll be able start figuring out how to get himself around while standing up.  Of course, the ultimate goal is for him to walk completely on his own but a little help along the way never hurts! 

A busy week - March 8, 2009

Jake, and we, have a busy week this week.  Tomorrow, we go to see his ENT so she can check out his new jaw and have her first look at it.  She’ll most likely want to do another scope, to check out the airway now that the jaw has been expanded, and most likely a MRI, just to make sure things look as they should!  Hopefully, she have some idea as to when, if all looks good, we can possibly get the trach out!

Then, on Wednesday, we go to a speech therapist who specializes in Augmentative Communication Evaluations.  That means that Jake will be evaluated on his ability to communicate and what assistive technology devices will help him communicate best.  That’s not to say that he’s un-communicative now...quite the contrary!!!  But, this will help him even more. 

More progress

Today Jake had surgery to remove the appliance from his jaw that was placed there during the jaw distraction surgery in December.  He went from having a major overbite to a complete underbite!  What a change!  If it’s possible, he’s even cuter!!!  The jaw was distracted (or moved out) over the course of three weeks and then was left to set for the next couple months.  We still have to let the bone settle and harden before any next steps but we’re headed in the right direction.  The docs gave us really good news today.  The ENT did a scope of his airway and everything looks really good.  There are no other problems that would prevent us from getting the trach removed in the future.  The plastic surgeon did confirm that Jake does indeed have a cleft palate (there was a bit of debate earlier on).  The palate will need to be repaired in the future but he’d like Jake to have more flex in the jaw before that happens.  So, after the jaw bone completely heals, Jake will begin some intense physical therapy on the jaw.  His mouth opens about half as much as it should, but that’s double what it opened prior to the jaw distraction!

Hopefully this summer we’ll be looking at getting the trach out!  Very exciting times, 2009 is looking to be a GREAT year for the Gates-Ehlers!!!

Thanks once again to all for all the good thoughts, prayers, well wishes and love.  We’d be lost without all the support we get from family and friends!  And, as always, we’ve posted some new pics!

15 Comments

kim & traci

That's great news!

Friday, February 13, 2009 - 07:12 PM

Anonymous

I see my prayers are being answered! Yipee! Hang in there girly. Andrea's girlfriend called me last week. Haven't called back yet. Yuck!
Love,
Mina xoxo

Friday, February 13, 2009 - 08:34 PM

Tiff

Oh my! I couldn't be happier for the three of you! He is SO SO adorable.

Friday, February 13, 2009 - 10:22 PM

Leslie

So glad to hear the good news, thanks for sharing!
Love the new pics too!


Hugs,
Leslie

Saturday, February 14, 2009 - 07:35 AM

cha

I always think about you guys and pray for your well beong.  Give jake a big hug for me!  Happy Valentine's Day girls!!!

Saturday, February 14, 2009 - 07:53 AM

Grandpa & Grandma Gates

Sorry we aren't there to celebrate the good news!  Looking forward to the day when I can Take Jake out in the boat fishing and when the three of you can come visit us in the Winter!

It is amazing how he tolerates all this surgery and therapy.

We love you;

Grandpa & Grandma

Saturday, February 14, 2009 - 07:56 AM

Sharon C.

Wonderful News!

Saturday, February 14, 2009 - 08:28 AM

Melissa

Yippee!

Saturday, February 14, 2009 - 09:34 AM

Anonymous

Thanks so much for sharing Jakes good news. I love getting the updates.  Happy valentines day!  Mama Barlo

Saturday, February 14, 2009 - 11:49 AM

Pam

What fantastic news!  Glad to hear 2009 is looking to be an A1 year for you guys!  Love the pics!

Saturday, February 14, 2009 - 12:03 PM

Anonymous

What great news!

Saturday, February 14, 2009 - 01:50 PM

Heather Hughes

Jake could not be more adorable! I'm so happy that things are going well. You all continue to be in my prayers. I look forward to seeing you again, Betsy, and to meeting Drea and Jake.

Saturday, February 14, 2009 - 09:31 PM

Aunt Jo-Ann

Hi Betz and Andrea
Wow what good news.....Just think about this little guys quality of life will be so much better.......
Love
Auntie
Jo-Ann

Monday, February 16, 2009 - 12:27 PM

Aunt Lorry

Hi there,
sorry for the delayed response. Great, wonderful news! He looks great and as usual just keeps  moving forward.

Tuesday, February 17, 2009 - 06:30 AM

Traci

Andrea must be the father because Jake looks just like her!

Thursday, February 19, 2009 - 01:40 PM