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!!!

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

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

Great Aunt Chris

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