St. Pete's Beach 2014

Summertime Sammie

Sammie (age 14) at Klondike Park

Sweetness

Toby and Lola (11 years & 9 weeks)

Flower Delivery

My favorite flowers are the kind that are delivered to my door...

...to my back door, that is...

...with roots.

Sammie's CI Surgery a Success!

Yesterday morning we checked in bright and early at St. Luke's Hospital in Chesterfield for Sammie's surgery to replace the broken cochlear implant on her left side.  After an hour of prep and paperwork, she was taken into the operating room for a two-hour procedure. (That's 7,200 seconds in case you were wondering.)  They were able to successfully remove the faulty device and replace it with a new one.  Because they are able to test the device in the operating room, we know that all 22 electrodes are functioning, which is excellent news and exactly what you hope for.

Sammie was such a trooper!  Not one single complaint.  She was positive and pleasant, calm and composed.  She walked right into that hospital without expressing a single worry.  She just smiled sweetly at everyone, made polite conversation, and thanked them for their help. The staff commented that she was more mature than most adults they saw.  In fact, she was so relaxed, the anesthesiologist needed to tell her to take deeper breaths so the nitrous oxide could take effect.  I just stared at her and wondered where this child came from, considering I was a nervous wreck on the inside and was contemplating asking if I could have my own prescription of Vicodin.  She, however, was extraordinary.

The only thing that disturbed Sammie at all was when Dr. Valerie, her audiologist, told her that once the laughing gas started to take effect, she commented about how the operating room was turning into a giggle factory.  But she was a little embarrassed about that, so I probably shouldn't mention it ;)

After the procedure, Sammie spent one hour in supervised recovery and one hour in outpatient recovery.  Then they sent us on our way!  We were home around lunch time.  How's that for crazy?  I have phone conversations and hair appointments that take longer than that. But she really did appreciate being able to come home to her own bed and she slept most of the day and night away - at least until 3:30 a.m.  (insert yawning).

Her initial activation is scheduled for June 24, just two and a half weeks away.  At that point Sammie will start auditory training to learn to use her new device.  It will take time and work, but we have no doubt she's up to the challenge.

Her Name is Lola

Sammie's cochlear implant surgery is scheduled for tomorrow.  

We need to arrive at the hospital at 5:30 a.m.  

Today was the day to get everything in order and rest up for the big day.  

Only that's exactly what we didn't do.  Instead, we woke up early and took a nice long road trip to a small town in southern Missouri and got...

A PUPPY!!  

Meet our newest love, Lola the Pug

She's a six-week-old, sweet-smelling, handful of happiness.

Just what the doctor ordered.

First Day of Summer = Lazy Boys

Toby and Trey ~ May 2013

Trey's Kindergarten Graduation

If You Teach a Man to Fish...

"If you give a man a fish, he will eat for a day.

If you teach a man to fish, 

he'll spend thousands of dollars on fishing gear and tackle."

~ insight from a wise friend who knows

Sammie's Surgery is Scheduled and the Details Are Amazing

This past week we met with a surgeon here in St. Louis and scheduled the surgery to replace the cochlear implant on Sammie’s left side.  (If you’re just hearing about this for the first time and have no idea what I’m talking about, you can read about it here.)

The surgeon we have chosen to perform the surgery is Dr. Jacques Herzog.  Dr. Herzog is a highly regarded otologist and neurotologist and is the director of The Center for Hearing and Balance Disorders.  He is considered by many in St. Louis to be the authority on cochlear implant surgery.  

The surgery is scheduled for June 7th.  We are to arrive at St. Luke’s Hospital in Chesterfield at 5:30 am, and Sammie will be taken into surgery at 7:00 am.  The surgery should last no more than a few hours, and we were told she would likely be able to come home later that day.  Because we were required to spend the night for the first two surgeries, we were especially happy about that news.  

Like I said in my last post, Sammie’s audiologist, Valerie, along with an intern from Washington University, joined us for her appointment.   Valerie has a very close working relationship with Dr. Herzog, and will even be able to join Samantha in the operating room!  I am so incredibly pleased about this.  It will be much easier to let her go that day knowing that we have a close friend in the room with her.  At least that’s how I feel today :)  Valerie joked during the appointment that she would be there to make sure they didn’t shave off too much of her hair.  Sammie laughed about that a little bit, but her facial expression said, “Oh my gosh!  I forgot about that part!”  In reality, however, it should only be a small section of hair they’ll need to buzz, and I told her I’d shave a little of mine off too if it would help.  

Sammie’s first two surgeries were performed at the University of Iowa.  We are very fond of the staff there, especially Dr. Gantz, who was the first to give Sammie the gift of hearing 12 years ago.  It was very difficult decision to even consider going somewhere else this time.  However, she developed an infection following the last surgery - after we had returned to St. Louis - and nobody here would see us.  Local surgeons were unwilling to even look at her because she wasn’t their patient.  The staff at the emergency room completely freaked out when we took her there.  Our pediatrician, who had first agreed to take her stitches out, suddenly decided that she couldn’t have anything to do with it.  It was a horrible, stressful mess, and we knew we needed to do things differently this time.  In the end, only one surgeon was willing to see us and deal with the infection... Dr. Herzog.  He also removed the stitches for us, and I found a new pediatrician.

We’re feeling very optimistic about things.  Agreeing on a plan and finally scheduling the surgery have been a huge relief.  There’s even an amazing common thread that ties everyone involved together.  Follow this:

• Dr. Herzog and Dr. Gantz trained together in Zurich, Switzerland.  They are actually very good friends and had spent the weekend prior to our appointment together.  Pretty Cool!

• While receiving services at the University of Iowa, Valerie was on staff with Dr. Gantz, and was Sammie’s audiologist there.  Weeks after our family moved to St. Louis, Valerie also moved to St. Louis after taking a job at the Moog Center for Deaf Education, where Sammie was already enrolled as a student.  Total coincidence.  Awesome surprise!  In fact, they did not even miss one single appointment together.  Seriously!

• Sammie was mainstreamed after graduating from the preschool program at the Moog Center for Deaf Education.  Dr. Gantz (Samantha’s first surgeon in Iowa) implanted the first graduate of the Moog Center for Deaf Education (in St. Louis.)  The first graduate of the Moog Center for Deaf Education (the one implanted by Dr. Gantz) was...Dr. Herzog’s son!!  SERIOUSLY!

So...Sammie’s first surgeon, Dr. Gantz, was the surgeon who implanted the first graduate from the school for the deaf that Sammie also attended, who was the son of the surgeon that will perform Sammie’s upcoming surgery.  If you don’t find that to be totally amazing, you might need to reread it!

For those of you wondering what the surgery will involve, Dave found this video online of Dr. Herzog being interviewed by a local news station.  It’s a few years old, but he sums the whole thing up nicely.  You can watch here.

Valerie and Sammie at the Moog Center for Deaf Education ~ Spring 2004

The Bad News and the Good News

THE BAD NEWS

Anytime someone asks the question, “Do you want the good news or the bad news first?” I always wonder who would ever want the good news first?  I always choose the bad news first.  It’s not that I like the negative stuff.  I just want to get the bad news out of the way - fast - so that I can move onto, and hopefully appreciate, the good news.  Most of the time, I assume that the good news is intended to lessen the bad news, so it only makes sense to take things in that order. So, I’m starting with the bad news.

One of Sammie’s cochlear implants is broken.  And unfortunately, it’s not the external, easily repaired or replaced part of the device (the processor). It’s the internal part of the device.  It’s the part that requires surgery to replace it.  It’s the part that’s inside her cute little head.  We’re not exactly sure why it is no longer functioning properly, but several outstanding doctors have reviewed Samantha’s audiology reports, and they all agree that it is not.  There are no more trouble-shooting options or professional opinions to wait on.  It needs to be replaced.

When Samantha received her first cochlear implant at the age of one, I remember being told that the internal device was “intended to last a lifetime.”  We’ve always known, however, that “intended to last a lifetime” does not mean “guaranteed to last a lifetime.”  After all, how many electronic devices last a whole lifetime?  In fact, given that we hope Sammie lives a long, long, healthy life, we never thought it would last her lifetime.  We’ve been expecting this - just not quite so soon.  

THE GOOD NEWS

1.  Sammie has the most amazing audiologist.  We’ve been with her since Sammie was a baby, and she basically walks us through these things.  She is a perfect balance of concerned and casual.  She’s very honest with us, but doesn’t overwhelm us with a bunch of scary what-ifs.  If I tell her I have a few quick questions, she’ll patiently answer the 72 questions that I actually end up asking.  In fact, we have our first surgical evaluation appointment tomorrow, and she’ll be joining us, not because I asked her to come, but because she offered to come.  I adore her.

2.  Sammie’s first implant, the one on her right side, continues to work beautifully.  This is the side that she learned to listen with and that she wears all of the time, even to bed.  The implant she needs to have replaced was her second implant, which she received at the age of eight.  In fact, she received the second implant partially in hopes that she would gain a more balanced sense of hearing, but more so because we wanted to have a backup in case the first quit working. The opposite ended up being the case (the backup needs to be replaced), but we are still very grateful that she she will continue to hear during this process.  Given that Samantha is profoundly deaf, if she only had one implant and it needed to be replaced, she would not be able to hear at all.  That would be an incredibly difficult time for her.  She has become a hearing person, and we feel responsible to do everything we can to keep her hearing.

3.  Dave and I have known since December that Samantha would need to have this surgery.  However, because December marks the beginning of Samantha’s gymnastics meet season, which she trains for 20 hours a week all year long, we decided to keep it to ourselves for a few months so she could finish her season without that worry.

I was very nervous about how she would respond to the news.  I spent a great deal of time wondering if she would be open to another surgery, how I would convince her to be if she wasn’t, and if I should convince her.  Unlike her first implant, she never learned to effectively use or appreciate her second implant.  In hindsight, we wonder if it ever did function properly.  Because it was a lot of work with few results, I knew she sometimes regretted having the second implant.  

When we finally sat down to talk to her two weeks ago, after her state meet, she handled the subject with incredible maturity.  She almost immediately agreed that we needed to have it fixed.  She was remarkably calm and composed.  In fact, she was mostly concerned about how long she would be out of gymnastics for.  She is brave and bold, and she amazes me.

DAY. PLAY. We play all day.

Celebrating Dr. Seuss Day 2013

A Gymnastics Team, a Sand Artist, and an Ethiopian Merman at St. Pete's Beach

The GQ gymnastics team at St. Pete’s Beach in Florida

(Sammie is middle level, far right)

 

 

 

 

 

The new warm up jackets.  It’s funny to me that gymnasts can’t wear earrings or nail polish.  They are covered in chalk, wrapped up in sports tape, and spit in their hands.  But when it comes to rhinestones, bring on the bling!!
 

 

 

Amy, Tori, Ashton, Maya, and Sammie

This was our favorite hang-out.  A charming ocean-front grille where the kids could hunt for shells on the beach while the adults enjoyed live music, cold beer, and the yummiest fried oysters.  I could pitch a tent here and live happily ever after.
 

Dave told Toby he would give him $5 to take off his shirt and join these nice men (strangers) at their table.  I guess when you’re 11, 5 bucks is 5 bucks.
 

Daddy bought Sammie a cute, little sea turtle necklace at a nearby market. 

So sweet.
 

Ashton, Scout, and Sammie

Toby spent hours creating sand sculptures.  His works included two sea turtles, a whale, an octopus, and an Ethiopian merman.

 

Trey didn’t really understand what he was agreeing to here. 
 

 

 

The girls gave Toby major deductions and said he needed to point his toes.
 

And then there was this.
 

 

Sammie and Ashton
 

 

A nice little souvenir :)