Strong Legs Run to Benefit Sibley Heart Center

Yes, it is that time of year again! Children's Healthcare of Atlanta is teaming up with CVS to hold their 26th annual Strong Legs Run (the full name of the race is Strong Legs Run That Weak Legs May Walk). Last year we participated, along with my parents and Chris's parents, and it was truly a lot of fun.

Just like last year, we are participating both in the races and in the fundraising. All of the money we collect will be designated for the Sibley Heart Center Cardiology group, who are Sam's surgeons and physicians. Last year, as a family, we raised over 500$. I would love to raise more this year, and get more people participating!

Race day this year is November 6 (Saturday) at Turner Field in Atlanta. There will be a 10K, 5K, one mile fun run, and 100 yard dash. The 100 yard dash is just for kids 12 and under, and they race against a whole mess of local business mascots. If you enter any race, you receive a t-shirt, and kids who do the dash get a shirt AND a finisher ribbon! This year they have more planned for the spectators, including a moon walk. Please check out the main page of CHOA to see the details (http://www.choa.org/default.aspx?id=2061)

To raise money for Sibley this year, we have started our own team! The team, in honor of Sam, is called Sam's Lub Dub Club! There are a few ways you can help us raise money:

1. To make a one time donation, go to our team page and donate under one of the team members, or under the "General Team Donation" tab! (Team Page)

2. Join our team! If you can join us in Atlanta to run, that would be great! Register from the main CVS/Strong Legs Run page and select 'Join Existing Team' and then use the drop down menu to select Sam's Lub Dub Club. After you pick your race and participant t-shirt size, you will be directed to set up your own personal fundraising page. Once again, anything extra you earn through your own fundraising campaigne, will go to The Sibley Heart Center! (Main Race Registration Page)

3. Can't run with us? Join our team anyway! You can still join the team and fundraise, even if you can't come and race with us. Under the main registration page, where you select which race you want to participate in, just select one of the two options: "Phantom Racer" if you would like an official race shirt, or "Fundraiser" if you would rather skip the shirt but still raise money.

There are benefits to joining our team! If you earn $50 (not including your race entry fee if you are going to race) by TODAY OCT 6, you get a Sibley Heart team tshirt (I know, cutting it short right?? Last year they extended this deadline but not sure about this year). As you earn over 100$, you start to earn gift certificates towards your choice of grocery stores/ restaurants/ etc (last year they also did visa cards). We are also considering making a Sam's Lub Dub Club tshirts to sell and to give to people who earn or donate 100$ or more, so be on the look out for that announcement!

Please take some time and consider a donation, or consider running with us, or fundraising with us! Clearly we think this is a great cause...The Sibley Heart Center is the reason Sam is with us today! If you have any questions, please contact me by email at kathywim (at) gmail (dot) com.

Thanks for your time!

Kathy

Stuff Stuff Stuff

It always feels like I don't have anything to write for weeks and then BAM I have 100 things to say. 

First, I have a prayer request (or 3).  My cousin-in-law Josh's wife Kimberly's mother died this past week after just being diagnosed with Leukemia.  This was very sudden and clearly they are in shock.  Please say a prayer for peace for them.  Also, two heart families are in the fight of their lives.  Joshua has had 2 open heart surgeries last week, and remains unstable.  Ewan is stuck on ECMO after his heart surgery, and can't seem to ween off.  Both of these children are mere weeks old, and both families are struggling to find peace in their children's suffering.  Please say a prayer for them and their families as they face a true unknown with their babies.

The Wimberly family has had an eventful weekend or two here lately.  After Sam recovered from his fever and ear infection last week, we made a trip down to Mobile and then Baton Rouge for an LSU game.  We took Chris's brother over with us to LSU.  We met my parents and brother there.  We watched my sister warm up with the band (she's in LSU's marching band), walked the campus, met up with old friends, and scored some tickets to the game!  Chris and Johnathan sat together on one side of the stadium and my friend Tamara and I sat together on the other side.  Chris and Johnathan had great brother bonding time, Johnathan really enjoyed seeing a college game and a college band, and Tamara and I had plenty of time to catch up on years of back logged girl talk. 

Once we got back to Mobile, we got to hang out with Chris's family a bit.  We also met our new niece, Penelope Anne.  Sam didn't seem to interested at first, but once he saw me taking photos of her, he wanted in on the action.  He gave her about 10 kisses on the head while I took photos.  He was very gentle, but I know he was more interested on stealing the spotlight than being sweet to her.  She's beautiful though, and I can't wait to see her grow and gain her personality (as I'm sure she got quite a personality from BOTH of her parents)!

 We had an uneventful week this week, with Sam's flu shot being the biggest excitement.  We decided to travel a little north yesterday to see our high school band directors new band again at their football game in McDonough.  Sam had a FREAKIN' BLAST.  He danced and cheered, waved at cheerleaders, and got to play the drums thanks to Johnny. We left at half time to catch some dinner before the ride home.  Sam hammed it up at the restaurant, and practiced all of his animal sounds.  He got quite a few compliments on how cute he was and how good he was being.  He slept SOOOOO well last night!

Coming up this week: Announcements regarding the Strong Legs Run to benefit Sibley Heart Center, me and Chris starting to get serious about running (we have now signed up for a 10K and a half marathon in Nov), and a trip to Florida to visit friends and tailgate for the LSU game!

~Kathy

What?! It's Mid-September?!?

Holy geez...where is time going?!?

We kicked off September with a trip to Gatlinburg, TN to my parent's new cabin.  They are slowing moving in furnishings to start renting it out as a vacation home.  Sam had a blast running around the big wrap around porch and being the center of attention. 

Sam finished his round of antibiotics from our most recent ear infection, but I could tell he wasn't quite right. This past Friday, he woke up a little warm.  I took him to day care anyway because he didn't have a true fever, and he was acting normal.  I was planning on calling the pediatrician to get a new antibiotic bc I knew the first one didn't do the trick on his ears.  Before I could even get a mile from his day care, and before I could pick up the phone to call the pedi, the daycare called and said Sam had thrown up.  I had to cancel my patients for the day, and Sam and I took a trip straight to the pediatrician who confirmed his ears looked quite bad.  We started a stronger antibiotic and Sam and I spent the rest of Friday cuddled up together. 

He was feeling a little better by that night, and we decided to go ahead with a small trip to McDonough,GA to see our high school band director at his new high school's football game.  Johnny was always so great to us when we were kids...he always felt like one of 'us' and made us feel like we were equals with him.  Some of Chris's and my best memories were with Johnny and the band.  It was so nice to see him again and watch him interact with his students.  Sam enjoyed it all too, and danced in the stands to the music.

Saturday, though, the fever returned with a vengeance.  Sunday (today) wasn't much better.  The fever finally seemed to pass this afternoon, but the crankiness didn't.  This has been by far the worst  ear infection...I'm starting to wonder if we have and ear infection AND something else.  Hopefully he can kick this thing quick, and make it until tubes (Oct 20) without another illness.

Today I got to talk to a sweet lady named Joy.  She is from our hometown, and just recently had a beautiful baby girl who was diagnosed with an apparently quite rare congenital heart defect.  It was so nice to talk to her.  We had a lot of the same feelings and internal conversations regarding diagnosis, doctors, and the future.  I look forward to keeping up with her and her family and helping each other through the craziness that is CHD!

~Kathy

CHOA is the Best (and other News)

Sam had his ENT appointment in Atlanta today.  We nearly missed the appointment because somehow we got lost...even though the office was RIGHT outside of Sam's CICU stepdown room from when he had his surgery!  Of course from the second we step in the door, we remember why we love CHOA so much.  EVERYONE is nice, helpful, and truly cares.  Everything runs efficiently, everything is clean...it's just the best place for anyone to take their kid to if they are in need of special care.

Anyway, the doctor was super great.  He looked in Sam's ears with a microscope thing (of course the nurse and I had to totally restrain him which he of course fought with all his might).  He saw right away that Sam has his 8th double ear infection.  He also admitted that Sam definitely does need tubes.  He immediately asked us if we had every had Sam's hearing tested.  Of course we hadn't since he was born.  The doctor ordered a hearing test and the audiologist came right away.  Sam and Chris went into a sound booth and the audiologist did her thing.  In the end Sam's hearing came out below normal, and worse on the left than right.  She says it's probably just because of how clogged up his ears are, and we would retest after tubes were placed.

The doctor (who is the only ENT who does surgery with the cardiac anesthesiology unit at Egleston) looked at his surgery schedule to find us a date.  He is clearly a busy guy.  Not only is he the only ENT who does surgery at Egleston, he is also the only guy who does cochlear implants in Atlanta.  SOOOOO his first open appointment for surgery was OCTOBER 20!!  UGHSLKSHDFLHUGH!  He did graciously tell us that if anything came open before that date he would put us in. 

Poor little Sam, though.  I knew he was getting an ear infection.  Aside from our puke/diarrhea night, he has spent the last few nights crying every 30 min.  I've been giving him Motrin every 6 hours or so for the last day, and he still had a 99 fever at the ENT today.  He was a good boy the whole time (aside from battling me and the nurse).  He didn't like the ENT too much after the microscope incident.  As we were leaving, Sam, Chris, the ENT, and I were walking to the front door.  Sam, who was walking with us, wouldn't take his eyes off the ENT...didn't trust him I suppose.  Anyway, poor suspicious Sam walked right into a wall and dropped to the floor.  Chris and I were laughing so hard, the ENT ended up picking him up off the floor.  Poor kid.

So to recap: CHOA is amazing, Sam needs tubes (Oct 20), Sam walked into a wall. 

~Kathy

Boooooo to Thieves

So last night, our car got broken into.  It was parked in our driveway right next to the house.  Unfortunately, we left it unlocked.  Naturally someone would be checking for unlocked cars on the ONE NIGHT we leave the car in the driveway AND unlocked.  My husband had his Zune and Garmin GPS stolen.  The person didn't take my purse, or some of Chris's work tools.  Makes us think it was probably a teen.  I wrote an email to everyone on our neighborhood directory and got back quite a few responses from other people who had stuff taken out of their cars last night, too.  That really just ruins your sense of safety and confidence in your neighborhood.  And we live in a good neighborhood, too.  Sigh.

Of course, we probably came pretty close to catching the jerk.  Last night, we were up every 30 min with Sam.  He had a good tummy bug (diarrhea and puke).  He was pretty dehydrated today but was fine.  We stayed home together and vegged out.  He did help me do something productive: finish shopping for all of our nieces' and nephews' Christmas gifts!

On deck for tomorrow: Sam's big ENT appointment with the only ENT in Georgia who will perform any ENT based surgery on children with congenital heart defects with Egelston Hospital's Cardiac Anesthesiology team!

~Kathy

Successful Cardio Appointment

Sam had his regular 3 month cardiology appointment.  In case you have forgotten our history, Sam is a major doctor-phobe.  You could tell they were prepared for a fighting match.  The intake nurses closed the door behind us when we got into the EKG room, and talked over a game plan.  But Sam was surprisingly docile.  He still isnt a big fan of the stickers for the EKG, but he let them get all the readings they needed.  Pulse oxygen was at 83%, BP at 100, weight was 30lbs and heights was 36 inches (that's three feet tall people!). 

Sam even made friends with Dr. Cardis and his intern and kindly let them listen to his heart with little fuss.  Dr. Cardis ordered an echo which was unexpected on our part, but apparently it was time.  I totally thought Sam would nut up but he was near perfect for the echo nurse.  Dr. Cardis read the echo and said Sam looks great and very stable.  So stable that he wants to cut Sam back to once every 6 month visits after his second birthday.  YIKES...that feels like FOREVER between visits!

Let me take a moment and explain why Sam will be holding off on the Fontan as long as possible.  For one, his anatomy will allow us to do so.  Unlike many hypoplastic right hearts, Sam DOES have a pulmonary artery (even though it is small).  This assists in a small way with getting 'blue' blood from his lower body to his lungs (his anatomy is quite complex now...I'll save the drawings for another post).  But Dr. Cardis explained that in kids who don't have at least a minimally functioning pulmonary artery, the risk of developing small collateral vessels in the lungs rises, which leads to decreasing pulse ox rates and heart failure.  This puts the kids in for the Fontan earlier than with kids who have a pulmonary artery.

After the Fontan, the count down clock to transplant starts.  On top of that, there are consequences for other body organ systems due to the Fontan circulation.  If we can hold all of this off, we will.  Dr. Cardis told us we will go for the Fontan under 3 circumstance: 1)Sam goes into heart failure 2)Sam is unable to participate in regular daily activities due to poor oxygen levels 3)If we feel like we want Sam to participate in more advanced activities (like sports) in a greater capacity than he is currently able.   Well trust me, as much as I want Sam to experience sports, we will NOT be putting his life at risk just to do it.  Soooo, considering only circumstance 1) and 2) will lead us to surgery, Dr. Cardis thinks Sam could go YEARS before needing the Fontan...maybe up to age 10 or more.  He has told us this before, but he gave a great "Sam's Anatomy" review and I understand more clearly how we will accomplish this. 

All in all, a GREAT cardio visit.

Yesterday, a fellow heart mommy hosted a 'blog event' to help heart families link to each other.  Everyone was to share their "Heart Story" and post a link on her blog.  Our story is posted on Sam's Half a Heart page, and you can visit her web page (link below) to check out other families stories.

~Kathy

First Haircut and Other Goings-on

Sam took a 2 hour nap today.  When he woke up, his hair was INSANE.  It was frizzy, knotted, standing up on end.  It was clearly long past time for a haircut.  We took him up to a little place right across the street from our neighborhood.  I totally thought he would freak out the whole time, but he did SOOOOO good!  And the lady was super good with him.  All his silky baby hair is gone...he has big boy hair now.  So sad.  But he looks super cute.  I'm going to get him some gel so we can spike his hair up. 

Two other things I would like to briefly bring your attention to:

1. Head over to our other page (Half a Heart Full of Life) and read the most recent post.  I have a prayer request for a beautiful heart baby on the other side of the world.

2. The Strong Legs Run is coming up in November.  This is a fundraiser for Children's Healthcare of Atlanta's Sibley Heart Center (the group who saved Sam's life, and the group who will some day perform more surgery on him).  This is a 10K, 5K, 1 mile fun run, and kids 100 yard dash with a lot of other fun events scattered in between.  It takes place at the Atlanta Brave's baseball stadium.  This year we are going to make a separate team just for Sam (looking for team name ideas if you have any).  I will post the information as soon as I can.  We may be making team t-shirts to sell as part of the fundraising.  If you want to run/ walk with us, or just want to help us raise money for this amazing cause, keep your eyes open for updates soon!

~Kathy