The next surgery - December 1, 2008

Today, we scheduled Jake’s jaw distraction surgery for December 12th.  Yea!!!!!!  With this surgery, we’ll be on the road to getting the trach out next summer.  The entire process will take about 3 months but from what we’ve been told, it’s not a bad surgery. 

Jake did get fitted for his speaking valve (Passy-Muir valve) and has been doing really well with it.  The first time we heard him cried, we both got a little misty.  After all, that was the first time we’d really heard him cry since the day he was born.  I have a feeling that once he figures out much he can bug his mom’s by talking, we’re done for!

December 12th is going to be a really big day for us.  We really appreciate all the good thoughts, love, and prayers from everyone!

1 Comment

All you need to say  EVER!!

Jake, al you have to say is Ma, Ma,Ma,Ma,Ma,Ma,Ma    and you get everything.... well, almost everything... but they do stop and look at least!!

Wednesday, December 3, 2008 - 12:38 AM

A GREAT Day!

Today we went to see a new plastic surgeon at the UIC Crainiofacial Center.  What a dream come true!  The doc had no reservation about doing the jaw distraction surgery sooner rather than later.  Like, hopefully, within the next month or so!!!  VERY EXCITING!!! 

It’s been a busy time here in the Gates-Ehlers household.  Jake’s been to Shriners twice now.  Once was with the cleft lip/palate group - where we found the new plastic surgeon - and once with the orthopedic hand group.  The hand doc was satisfied with how Jake’s hands are coming along and had new splints made for him.  The goal is to get his wrists as straight as possible so that he can make a fist.  If he can make a fist, holding utensils will be much easier. 

We went to the foot ortho doc on Monday and he too is pleased with the progress he sees.  Jake has outgrown the first stander that was made for him so we’re getting another one.  He’s also started using a walker.  It’s got a sling that he sits in.  Now we’re getting him used to moving his legs for mobility purposes.  Also VERY exciting! 

This Friday we go to get him fitted for a one-way speaking valve.  It’s called a Passey-Muir valve and we’ve been trying to get him in for a while.  We both truly believe that he’s dying to talk...and I have a feeling we’ll be hearing lots from him!!!

Thanks, as always, to all for the good thoughts, well wishes, and prayers...it truly does take a village!

On another note, I’ve decided to sell my motorcycle (Dr. Mary, QUIT cheering!).  If you know of anyone who’d be interested in a 2006 Harley-Davidson 883L with 406 (yes, that’s four hundred and six) miles on it with an extended warranty, please let me know!

Good News - August 9, 2008

Jake had another swallow study done on Thursday.  He “failed” the last one he had shortly after he was born so we kept our fingers crossed.  Much to our delight, Jake does in fact swallow!!!  AMAZING news!  While he has to work a lot to actually swallow, after 4-5 tries, the food does go down.  Now we can start trying to build up his esophageal muscles that will eventually let him eat for nutrition.  Thanks to everyone for all the good thoughts and prayers!

We’re going to Shriner’s next month.  We’ll be seeing the cleft lip/palate group on Sept. 11th and we’ll see the orthopedic hand group on Oct. 1st.  Hopefully we can get back on track and make more progress towards getting the trach out.

Jake’s legs/feet are doing well.  He really kind of enjoys being in his stander, he falls asleep in it so he must be fairly comfortable!  

New pics posted as always!

Too long - July 13, 2008

We haven’t dropped off the face of the earth, contrary to popular belief.  We have been busy in the last several months though.  On April 19th, Jake turned ONE!!!  Amazing!  It certainly doesn’t feel like he’s been here that long.  He’s come a LONG way in that year though.  He’s officially out of casts - hopefully, if not for good, for a super long time.  On March 26th he had the clubfoot surgery.  After surgery, he was in soft casts for two weeks.  Since he had two pins in each foot, they needed to do the cast change under anesthesia.  It all went well and Dr. Dias is/was REALLY happy with how his feet look.  Jake is fascinated with his feet now.  He looks at them whenever he’s in his stander and when they’re out of his new AFO’s (Ankle-Foot-Orthotics).   He also has KAFO’s (Knee-Ankle-Foot-Orthotics) which he wears at night. 

We’ve been back to meet with the docs in Cincinnati and really didn’t get too much new news.  We can do the jaw distraction surgery and it may or may not facilitate getting the trach out.  That’s exactly what he told us last time.

We also decided that we need to take Jake to Shriners here in Chicago.  Shriners Chicago is known for Cleft Lip/Palate repair and they also have an arthrogryposis clinic.  Hopefully we’ll start making some progress with his hands now that his legs are in better shape! 

We’re also going to see a gastroenterologist on Tuesday.  We’re 99% sure that Jake has reflux.  He’s pediatrician has put him on Prevacid but the throwing up continues.  It’s been about 3 months now...not fun!

We’ll do our best to be more on top of the blog since that’s how we communicate with so many folks but feel free to drop an email or give us a call!

Successful Trip - March 1, 2008

Hopefully, we’ve FINALLY found the two specialists we’ve been looking for.  We met Jake’s new plastic surgeon on Wednesday.  All of nurses describe him as a grumpy old man in the same breath as saying he’s the best doc they’ve ever worked with.  He tells it how it is without a lot of sugar coating.  He confirmed that Jake doesn’t have a lot of movement in his jaw.  This makes many things difficult including the palate repair.  He checked Jake’s palate and wasn’t completely sure of what’s going on in there.  He said it’s definitely not a normal cleft but he couldn’t see or feel exactly what it is.  That being said, we did get head x-rays before we left OH. 

On Thursday, we met the new ENT/Head & Neck surgeon.  Another straight shooter.  From what they found on the scope, it’s not going to be a quick fix to get the trach out.  They are cautiously optimistic about getting it out.  It will definitely take more than just the jaw distraction.  Probably a couple more operations.  They saw a few things during the scope that may need surgery but, as things progress, they could work themselves out.  The classic hurry-up and wait game!  At any rate, we did get the go-ahead to start trying solid foods with him again.  We’ve been waiting a while for that!

So, as always, stay tuned!!!  

8 Comments

Anonymous

That is good news, I'm so happy they gave hope and encouragement.
Love ya,
Scary Aunt Terri

Saturday, March 1, 2008 - 07:40 PM

Sara

Yeah,  Go Team Jake!

Sara

Saturday, March 1, 2008 - 09:34 PM

Grandma &Grandpa

Grandma and Grandpa are happy too!  Jake is blessed with parents who will always make sure he gets the best.  We are excited to see him in April and look forward to celebrating his 1st Birthday.

Grandma & Grandpa Gates

Sunday, March 2, 2008 - 05:11 PM

Aunt Lorry

Thanks for the update. Good news really don't you think? Make sure you takes lots of pictures of the boy eating please!!!

Monday, March 3, 2008 - 06:57 AM

Auntie Jo-Ann

Hi Guys
Wow that sounds like good news.  I am so glad you made the trip.  Boy it sounds great that he could start to get baby food.  Boy that is really going to be a mess.  Hope he doesn' spite out at you!!!!!  Of course keep me posted.
love
Auntie Jo-Ann

Monday, March 3, 2008 - 10:53 AM

Anonymous

Thanks for the update.  "The classic hurry up and wait" comment is so true!  The main thing is that you know you're doing everything possible to get the best care and treatment for Jake.  You're doing a terrific job.  Give Jake a hug for me and I hope to visit when Grama Gates gets back in town.    Call anytime if you need an extra hand. Deb

Monday, March 3, 2008 - 04:51 PM

Anonymous

Hey Roon and Drea!

I know you guys are hanging in there! Keep on praying. Youl'd be amazed at the power of prayer, and have failth!

Love,

Mina

Tuesday, March 4, 2008 - 07:27 PM

Judy

So glad the trip to Ohio was encouraging.  Jake meets each challenge with an
amazing spirit and with his mommies in his corner, always seeking what's best for him and ALL who love him praying for him, I'm sure that will continue as he goes forward. 

Solid foods should be fun, as if he's not growing fast enough as it is!!!.  I can just imagine those big eyes as he tries new foods.  You guys better get ready to duck if he finds one he doesn't like.

Kiss those cute cheeks for me (his, not yours) and hugs to the mommies.
You are the best!

Love ya,
Judy

Wednesday, March 5, 2008 - 08:59 AM

And...we're off - February 24, 2008

Well, we’re going to see the docs in Cincinnati this week.  Keep your fingers crossed that we get good news.  If all goes well, Jake will have two new doctors!  More when we return!

4 Comments

cha

I am thinking and praying for you guys.  I really like the family pocture on your website.  It's a great picture of the three of you.  love ya lots...cha

Monday, February 25, 2008 - 12:21 AM

Uncle Fuzzy

Good luck Betsy Andrea and Jacob, Let me know if you need me to check the house while your gone. Take care

Monday, February 25, 2008 - 08:28 AM

Auntie Jo-Ann

Hi Guys
I will sure will be praying hard for good news.  I know that little guy is really tough.  And so are you two.  God knew what he was doing when you sent Jake to both of you.  You both are the best parents Jake could have.  I love all three of you.
Love
Auntie Jo-Ann

Tuesday, February 26, 2008 - 08:01 AM

Anonymous

Hope all goes well. Give your little guy a hug for me.  Love, Deb

Tuesday, February 26, 2008 - 03:16 PM

A Quick Update - February 5, 2008

We heard back today from the docs in Cincinnati and we’ll be going for a couple days later in February.  Hopefully good things will happen!!!