Thursday, July 1, 2010

A Couple Bumps - February 2, 2008

Well, as is to be expected, we’ve hit a couple bumps in the road.  Jake was supposed to have his palate repair done on Jan. 11th.  We did go in for surgery but the palate wasn’t done.  The doc said he couldn’t get Jake’s mouth open wide enough and he isn’t sure that his jaw even moves.  Needless to say, that really wasn’t a satisfactory response.  Before we even left the hospital, we began looking for a doc for a second opinion.  After getting a recommendation from one of Jake’s nurses, we found a doc in Cincinnati who is an ENT and head/neck surgeon.  That’s a rare combination.  We’ve been in touch with this doc and are waiting to get a consultation scheduled.  They want us to see the head plastic surgeon first.  So, we wait!

On a similar front, we hit a bump with Jake’s legs.  Nothing major but he’s back in casts.  The ortho doc wasn’t satisfied with the range of motion he has and wants to do casts again until his clubfoot surgery at the end of March.  Once again, we’ll be trekking into the city every Tuesday to get a fresh set of casts!

Jake is really getting big!  He’s over 18 lbs. and around 27 or so inches....it’s hard to get an accurate height on him though.  We’re all doing well and anxious to get these next steps moving.  Stay tuned!!!! 

A slight delay - December 13, 2007

Well, for those of you keeping track at home, Jake was indeed supposed to have surgery tomorrow.  Unfortunately, about a week ago, he spent 5 days in the hospital with a respiratory virus.  For any kid without a trach, it wouldn’t have been a big deal but for Jake, it meant hospital time.  He was on oxygen and a nebulizer treatment of albuteral (sp?) every two hours.  After finally being able to breath easily enough to go to sleep, he did exactly that for about a day and a half straight! 

After talking to his plastic surgeon, we all decided that it would be best to give his lungs a bit more time to recover before surgery.  It’s been rescheduled for January 11th with the clubfoot surgery on March 6th.  Gonna be a busy winter!!!  We all hope that everyone has a VERY safe and happy holiday time! 

11 Comments Manage Comments for this Entry
Anonymous
Thanks for the update. The boys miss him, but they send their love,pokes..oops I mean hugs and kisses.

love ya,
Aunt Chrissy and the Fam
Thursday, December 13, 2007 - 11:11 PM
Josh
Hi guys!  So sorry to hear Jake had to do the Nebulizer routine -- we have been down that road a couple of times too.  It does seem to take it out of them afterwards!  (wish I could sleep for a couple days straight...)  Hope everyone is chilling and recovering after the hospital stay.

Thanks for the update on Jake's winter schedule!  Love to the little guy, and cheers for happy holidays and some family down time!  Josh
Friday, December 14, 2007 - 07:56 AM
Michelle & Dot
Thanks for the update mom.  We love you three very much and think of you often even though we don't get to see you or talk with you very often.  Why is life so darn busy!??!

Glad to hear Jake is on the mend.  Life is so much easier when you can breathe!! 

xoxoxoxo
Michelle & Dot
Friday, December 14, 2007 - 08:24 AM
Sar
Thanks so much for keeping me "in the loop".  I know respiratory problems can knock you out (I and my son have asthma and neb treatments can pump you up then let you down).  Good idea to wait until healthy until any proceedures. 

I know you'll do what's best.  He's got the 2 best mom's to take care of him...lucky guy!

Sara
Friday, December 14, 2007 - 08:31 AM
Bruce and Edna
Sorry to hear about the delay but it is good to see him fight so well. Keep us posted and Happy Holidays.

Bruce and Edna
Friday, December 14, 2007 - 10:22 AM
Anonymous
Hi!  I'm just very pleased that Lil Jake is doing so well.  So, take your time and know that I'm praying for him and you all during this time.  Because, when you're caring for a future basketball player, it take lots of patience!  Enjoy the holidays!
Dolores
Friday, December 14, 2007 - 10:24 AM
Anonymous
HI So happy to get fab updates and pictures! He has come a long way! Enjoy the holiday's in your new home!!
Take care Lynda (his favorite nurse)
Friday, December 14, 2007 - 11:13 AM
Anonymous
michelle and doug,

we are sorry to hear that the surgery was postponed.  It takes  a lot to get mentally prepared for these things, you guys are doing such a wonderful job.  It was great being with your mom and dad and catching up on all his progress.  We miss you guys and your whole family is always in our thoughts and prayers.  We hope you all have a great and healthy christmas! please keep us updated.
Friday, December 14, 2007 - 11:41 AM
Grandpa Gates
It is great to be back home so we can spend some time with Jake.  He is growing up so fast and gets cuter every day.  We were sorry that surgery was delayed but glad you and the Docs are being cautious.

We are looking forward to his first Christmas.

Love,

Grandpa
Friday, December 14, 2007 - 02:10 PM
Auntie Jo-Ann
Hi Guys
I am so sorry about the postponment of the surgery.  But I definitely agree to give the little guy some much needed recoup time before having to do the surgery.  Hey I am definitely going to miss you at Christmas.  This has been one of the longest time that I have not seen you all.  Next year I hope to do better!!!! Give each other and of course Jake hugs and kisses from his Great Aunt.
Love all of you very much
Auntie Jo-Ann
Saturday, December 15, 2007 - 10:38 AM
Hello Wonderful Moms,
We saw Grandma and Grandpa last night at Aunt Bernies. Dave showed us all the latest picture of Jake. He, of course, looks absolutely adorable. Hope you are having a beatiful Christmas with my great nephew. Much love, Great Aunt Chris
Tuesday, December 25, 2007 - 08:30 AM

Monday, June 28, 2010

Lobster anyone? - November 10, 2007

Jake’s first Halloween has come and gone.  The Moms decided that dressing him up as a lobster would be a GREAT idea even though there really wasn’t much trick-or-treating.  He was ADORABLE!!! 

It’s been a couple weeks now since the casts came off.  Finally the splints are going on without causing too much pain.  And, much to our delight, he’s tolerating the full body splint much better at night.  We have the cleft palate surgery scheduled for Dec. 14th and the clubfoot surgery is scheduled for Feb. 14th.  Gonna be a busy winter!!!  Jake now has therapy sessions four days a week.  Talk about a busy schedule, sometimes it’s hard to keep up!

Today, Jake helped us rake leaves in the yard...see the pictures! I think he enjoyed himself.

We’re still unpacking and in the midst of that decided to brew Jake’s first honorary beer.  It’s being appropriately named JT’s Maple Harvest Brew...under the Drea’s Draught line.  Look for it on the Thanksgiving table!

You guys are so goofy!  Gotta love the moms who brew together...
Sunday, November 11, 2007 - 05:52 PM
Judy
Hey you guys,
Could Jake get any cuter?!!?!!  I'm printing a picture of "Lobster Boy" for
Frank.  Maybe he could be the new "spokes-lobster for Supreme.

So glad to hear the splints are getting more comfortable for the little
man.  And it sounds like he leads a busy life, what with the therapy,
gardening & charming everyone he meets. 

Thanks for posting those great pics.  Give him a kiss for me & lots of
love for him & the mommies!
Sunday, November 11, 2007 - 10:23 PM
Anonymous
Hey Betz, Drea and Jake!  Long time no chat, but I'm very happy to keep up with you all through the blog, so thanks for posting when you get the chance.  Jake looks like he was MADE for that lobster outfit... well, maybe 2-3 of him were made for it... LOL.  Glad you're getting settled in from the move.  Wishing you all the best!

Tyson
Monday, November 12, 2007 - 01:46 AM
Scarry Aunt Terri
Oh my gosh, he gets more adorable every time I see him.
It would be so hard not to spoil him.

Love ya
Monday, November 12, 2007 - 07:50 AM
Auntie Michelle and Auntie Dot
Well, nothing goes better with lobster than a good brew! 

I love the pictures of Jake in the leaves!  He looks like he's totally in his element out there in the fall foliage.  What a sweetie! 

Thanks for the update.  You three are always in our thoughts.  We love you.
Monday, November 12, 2007 - 09:30 AM

A Busy Month...or six weeks - October 17, 2007

Yes, I know, you all think the Gates-Ehlers fell off the face of the earth.  In fact, we finally moved and are trying to get settled in!  I can honestly say that making to move to Palatine was one of the best decisions we’ve made!  Other than the commute being about twice as long...or longer if traffic’s bad...we LOVE it.  While we still have boxes and boxes to unpack, we’re slowly getting things unpacked and where they belong.  Of course, Jake’s room was the first to be done and looks great.

Jake has really made some wonderful progress over the last 6 weeks or so.  We’re into the final week of the serial casting for his legs.  They’re practically straight.  He’s a fairly long little boy!  Next week when we go to get these casts off, he’ll get new splints for his legs to help keep them extended.  Speaking of splints, he’s got a new full body splint that looks like some kind of ancient torture device.  The idea behind it is that it will hopefully eliminate the need for tendon release surgery on his hips.  Dr. Dias doesn’t think he’ll need the tendon release surgery on his legs either!  Any surgeries we can avoid, the happier we are!

We’ll be scheduling his cleft palate surgery for December - most likely to coincide with the end of the semester so Andrea won’t have to juggle surgery with finals.  Then, in late January-early February, we’ll schedule his clubfoot surgery.  That of course will end with a bit more casting but nothing like the last 11-12 weeks of casts!

I know I’d mentioned jaw surgery which he’ll absolutely need before the trach comes out.  Dr. Vicari, his plastic surgeon, said he’d like to wait until after the palate surgery.  Really, we’re hoping Jake gets some teeth really soon.  The concern is that if during surgery the tooth buds get damaged, his teeth could be damaged.  And who wants that to happen?!?  You only get one shot at good teeth, right!!!  Anyway, since he has the trach and isn’t really experiencing any problems with it, the doc would like to wait.

Whew, lots to catch up on!  As of Friday, Jake will be six months old!  Where did the time go?  I feel like it was just yesterday that I was draggin’ myself to the NICU everyday.  As always, I’ve posted more pictures.  Thanks for all the well wishes, good thoughts, and prayers!  They seem to be paying off!!!  

Anonymous
Thanks for keeping me in the loop.  I love the picture of him sitting in the blue chair.  He really is a little prince on his thrown.  Hope therapy is going well. Is he still tolerating hand splints?  Any thought on elbow splints?  Keep communicating at he is a work in progress.

Sara
Thursday, October 18, 2007 - 07:04 PM
Anonymous
Hi Betsy, Andrea and Jake,
That is great news.  We keep you in our prayers all the time.  It's hard enough being new parent's (and new baby) without thinking about the next surgery,
Your doing great, God bless you all.
Love
Scary Aunt Terry
Thursday, October 18, 2007 - 07:05 PM
Anonymous
Jake is a tough little guy!  He has gone thru more than most people will experience in a lifetime but always seems content. He is a special little boy and we look forward to his growing up.

Grandpa Gates
Friday, October 19, 2007 - 04:07 PM
Anonymous
Betz,
It's great to finally meet Jake. Thanks for the updates. It will be great to see him more now that I'm home.
Later,
Fuzzy Monkey
Friday, October 19, 2007 - 10:27 PM
Anonymous
Jake looks GREAT!  You"re both doing a terrific job being Moms juggling 100 million diffirent things  I'm here in Palatine, so call anytime if you need an extra hand.   Love, Deb
Saturday, October 20, 2007 - 10:19 AM
Anonymous
Hey sisters and Baby Jake,

It's so wonderful to see all the support and blessings and thoughts and prayers and well wishes that are always being sent your way. It touches me so much to know how much you all are loved. I love all of you very much and you can call on me to be there. I love my nephew more than words can say. He has touched my heart in a very special way, one that I wasn't expecting. Being an Aunt is a wonderful thing.


Love to All,
Chrissy
Sunday, October 21, 2007 - 11:57 PM

Great Progress - July 31, 2007

Went to the ortho doc today for a new set of casts.  The doc was really happy with the progress so far.  He said that in just a week Jake’s legs have straightened out about 20 degrees.  It’ll be a gradual change but he’s starting to look tall!

Last Saturday, Aunt Karen & Uncle Dirk invited us all to the Sox game (thanks so much) to celebrate Sarah’s birthday.  Jake had a GREAT time and looked really cute in his little Sox outfit and the hat that the mom’s bought him.  Of course the hat was WAY too big but that leaves lots of growing room.  Jake really enjoyed the game but the fireworks scared him a little bit!

We are starting to pack up the house for the big move.  We did indeed find a house in Palatine and we’ll be moving in at the end of August.  This will be a very busy month!  With the weekly doctors appointments, Betsy getting ready to teach 2 courses in the Fall, Andrea taking several classes, on top of moving we’ll be a busy little family.  That doesn’t mean that we don’t have time for family & friends though.  If you’d like to get in a visit with Jake before we move, please let us know!  We love to have folks over to meet him.

As always, thanks for all the love, support, well wishes and prayers!

Little man Jake looks so cute in his sox gear!  Can't believe how much he's grown in just a couple of weeks.  I want to schedule a visit with our favorite little sox fan...
Saturday, August 4, 2007 - 08:52 AM
Poor Jake...forced into Sox gear!!
I feel so bad for Jake...I was really hoping the mom's wouldn't put him in that outfit!!  I will see if I can find some Cubs gear and bring it over before the big move!  Glad to hear that things are progressing well, and thanks for the updates.

Michael
Saturday, August 4, 2007 - 11:00 AM
Anonymous
Jake is sooooo cute. Can I borrow his beautiful eyelashes!!  What a beautiful child! Glad things are going well!
Lisa Gates
Saturday, August 4, 2007 - 11:18 AM

Serial Casting - July 27, 2007

Sounds interesting doesn’t it?!?  On Tuesday, Jake got his first round of casts on his legs.  They go from his upper thighs to his ankles (just check out the photos).  The ortho doc wants to work from the hips down, thus leaving his clubfoot surgery for later.  He’ll get new casts each week with the purpose being to slowly stretch out his legs.  At some point he’ll probably need surgery to get the legs as straight as they should be.  Lemme tell ya, this little guy has abs & hip flexors of steel!  The casts have to weigh a pound or two a piece and he lifts his legs up like nothing’s there. 

Things are busy as always.  Jake has some type of appointment just about every day.  The moms are doing well and just enjoying being moms!
Pam Goff
Ok, this little guy is either going to have the patience of a saint and just sit there and smile and not have a care in the world or be  one of those guys that says, "bring it on!!! What else have you got for me!  I can handle anything!"  You all are such troopers!  This is such exciting stuff I can even explain how happy I am to see all the progress.
Lots of Hugs!
Friday, July 27, 2007 - 09:56 PM
Judy Bianco
Ohmigod!, Jake has put me into cute overload!.  I just love those expressive big eyes.  I can see the difference in his legs from the picture with the dino to the one with the casts.  What a sweetie to put up with all this so cheerfully.  He's
making such wonderful  progress, you must be thrilled.  I am sure all the love and comfort he receives from both Mommies (not to mention family & friends) helps
him handle whatever comes his way.  "Way to go, King Jake!"

Much love to all,
Judy
Saturday, July 28, 2007 - 01:23 PM
What a beautiful baby boy.  How do you ever put him down.  He has grown so much and aparently is eating well.  I look forward to the updates and share them with noel and the kids.  You mommies are the bomb!

cha
Sunday, July 29, 2007 - 03:48 AM
Auntie Jo-Ann
Hi Guys
Boy Jake as really grown since I saw him last.  He is just a little trooper.  He probably is saying enough is enough.  But what ever you got bring it on.  I am tough.  Congradulations on the house....
Thanks for keeping us all up to date on Jake's progress.  He is doing so great.
Love
Auntie Jo-Ann
Sunday, July 29, 2007 - 10:53 AM
Anonymous
He's Beautiful! Absolutely Beautiful! Sorry we missed you over the weekend little guy. I'm going to try and see you soon. Way to go Moms!  You must be proud.  Love you all.

Aunt Chrissy and Family
Monday, July 30, 2007 - 08:26 PM
Grandma Gates
OK he is toooo cute!  I am lucky enough to see him often, so I forget to check out the blog.  The pictures are great - what a cutie.  It is hard to believe that he is even cuter in person where you can see his sweet little personality developing.  What a wonderful additon to our family.  We are truly blessed.

Love

Grandma Gates
Tuesday, July 31, 2007 - 06:29 AM

What's next? - July 18, 2007

Jake got the sutures removed from his lip yesterday.  He looks fantastic!!!  See the pictures page for proof!!!  The doc said that when we go back to visit him in a month, he’ll take a look at Jake’s jaw and consider doing the jaw distraction. 

If we haven’t explained it already, Jake’s jaw is too far back thus causing his tongue to block his airway when he sleeps (probably when he’s awake too).  There’s a procedure they can do called a jaw distraction in which the jaw is reconfigured to allow more space for the tongue.  It’s another surgery with the potential for an exterior appliance for the duration of the distraction.  Given that it won’t necessarily be pleasant, we’d prefer to get this done sooner rather than later.  And, once it’s successfully completed, we can begin the process to remove the trach!  That’s the ultimate goal!

Next week Jake begins the process of serial casting on his legs.  This will be a weekly casting event to move his legs to a straighter and more relaxed position.  The ortho doc said he’ll start from the hips and work down with surgery on his clubfeet being one of the last things addressed - from the orthopedic perspective anyway. 

Between all of Jake’s therapies (physical, occupational, speech, and developmental) and the doctors appointments, the mom’s keep up a pretty crazy calendar!  All that being said, we’ve FINALLY sold our house!!!  As of August 31st, we’ll be moving to Palatine.  So, now we have to find a place to live out there.  We’re looking forward to a bigger house where Jake can have his own room and not have to share it with Betsy’s computer.  So, those of you in the Oak Park area looking to visit Jake without having to drive an extra 20 miles or so let us know when you can swing by for a visit!!!  We always love visitors and Jake like seeing new faces!!!

As always, thanks for all the good thoughts, wishes, prayers, and support.  It truly does take a village and we’ve got a great one to lean on! 
Grandpa Gates
Jake's smile comes shining thru!  Especially with the dinosaur.  I cannot wait to see him when we go house hunting this afternoon.  Jake and I will chill out in the Scion whie you look at new homes for him.

By the way, for those of us already in the Boondocks, this move puts you 20 miles closer.  So We can see him more and he can play with his cousins in Alqonquin.
Wednesday, July 18, 2007 - 09:49 AM
Nurse Sarah
King Jake looks fantastic! I am so excited to hear about his progress. Thank you so much for all the updates. Just look at that killer smile! Hopefully Kevin and I can make a visit before you guys move. Congrats on selling the house too!
Wednesday, July 18, 2007 - 10:12 AM
Mary & Leslie
Thank you so much for sharing the wonderful updates and pictures!  Whether it's in Oak Park or Palatine, we look forward to seeing Jake and Moms' soon!  Much love, hugs and kisses!
Wednesday, July 18, 2007 - 02:35 PM