You Are a Very Special Person

I want you to know how amazing you are.

I want you to know how much you're

treasured and celebrated and quietly thanked.

I want you to feel really good...

about who you are.

About all the great things you do!

I want you to appreciate your uniqueness.

Acknowledge your talents and abilities.

Realize what a beautiful soul you have.

Understand the wonder within...

You make so much sun shine through, and

you inspire so much joy in the lives of

everyone who is lucky enough to know you.

You are a very special person, giving so

many people a reason to smile...

Today here in Boston, we witnessed once again, how precious life is.  You truly never know what your last words to someone might be.  I read this to Kalvin tonight and emphasized how much I love him.  What a very special person he is.  I am very lucky to have had this opportunity.  Our thoughts and prayers are with everyone suffering tonight.

Taken from: For you, Just Because You're Very Special to Me

by Doug Pagels

Kalvin fell asleep while playing with Charlie.  He is still recovering from Influenza B.  He gets very tired by dinner time now-so unlike him.

For other enteries including Doug Pagels' work read :   We Don't Always Get Chances Like This,   Here In My Heart  and  In This World

In this World

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Kalvin and his guinea pig...Charlie.

I was reading to Kalvin last night from my wonderful book For You, Just Because You're Very Special to Me  - Thoughts to Share with a Wonderful Person by Douglas Pagels.  I have mentioned this book before here:   We Don't Always Get Chanced Like These.   Kalvin gets very excited when I read to him from this special book and;  therefore,  so do I!   Kalvin always seems to have something nice to say when I am through reading.  Last night was no different,  just...well you'll see.

I began:

In this World

There are a few absolute gems in this world.

They are the people who make a tremendous

difference in other people's lives...  with the

smiles they give,

Insert Kalvin blurting out, "Catherine."

I continued:

the blessings they share, and

the way they warm the hearts of everyone

around them.

Kalvin pops in another, "Catherine."

I continued:

Those rare and remarkable people are so

deserving of every hope and happiness.

"Catherine!"

I went on:

They are the people who are incredibly

unique, enormously thanked, and endlessly

appreciated for everything they do.

And one of those wonderful,

deserving, and one-of-a-kind people

is most definitely...  you.

"And Catherine," Kalvin finished.



So you see,  not exactly the recognition I was looking for,  but sweet and heart warming just the same.  That is, as long as Catherine conitnues to be sweet and nice to my boy!

If your confused about "Catherine" or just want to read more about her see prior posts: A Different Kind of Broken Heart,    Wedding Update    and   It Felt Like Water...

It felt like water was being poured over my hair



Kalvin is eating again-you can see from the sauce on his face!

 Kalvin has been home sick from school all week with Influenza B.  Read Influenza B   Most of the time he has been sleeping,  but he has also watched much more tv than I would like to admit…or tell my husband about.  Last night on the Disney Channel,  we were watching and an episode of the sitcom Jessie.   Jessie thought her boyfriend was going to propose to her,  but it ends up being a big misunderstanding.  I could see Kalvin’s mind spinning as he watched it all unravel.  He looked a bit concerned.  Perplexed perhaps.  I waited for him to say something to me about all that had just transpired between Jessie and her boyfriend.  He didn't.  Those that know me,  know it was no easy task.  I am not good at waiting quietly.  But I did.  I waited.  And waited.  Mostly because I wasn't sure what was mulling around in his head and I didnt' want to raise concern that wasn't already there.  He never commented or asked any questions about the episode.

Later in the evening after Kalvin's shower,  he told me how happy he was that he had asked Catherine to marry him before his friend Gabe did.  He said, "Gabe was so jealous when I told him the news that I asked Catherine to marry me." 

He went on, "Gabe was really bummed because he said he was going to ask Catherine to marry him!"  Kalvin reported this all with a big smirk across his face.  He looked as if he had just won a big prize.

“Mom,” he continued,  still smiling ear to ear.  “When I asked Catherine to marry me,  I felt like water was being poured over my hair.   It felt all tingly.  It felt soooo good.  I was so excited she said yes.”

Is it the protective motherly instinct in me that has me just waiting for the other shoe to drop?  Waiting for his little heart to be broken.

To read more about Kalvin's proposal read:  A Different Kind of Broken Heart. and  Wedding Update.

Influenza B in April and...with CHD

Ughhh,  I never even thought of the flu.  It is April and flu season has passed.  Right??  Guess again.  The doctor took one look at Kalvin and said,  "That is the best telltale sign-a patient lying on the exam table,  let's do a flu test."   Kalvin was fine with a swab in his nose.

Kalvin had been begging me to take him to the doctor.  The doctor provides him with so much comfort - this is a good thing;  especially with so many doctor visits in our immediate future for his leg surgery.  See Artery Stretching Surgery.  By Tuesday morning Kalvin was miserable.  His temperature still was only 99.3, though.  He said his throat hurt.  He said everything hurt,  but especially his leg.  I have to admit, I was a little suspicious.  He was complaining about his leg hurting,  but to me that didn't make sense.  I was thinking it had to do with his leg not getting enough blood flow,  but it was his right leg he was complaining about - his good leg.  Then I thought he just didn't know what hurt and used his leg as an "excuse" because he knows it has some medical issues.

Turns out, Kalvin was completely right on.  First of all, my thermometer is broken and the poor boy had a temp over 103.  That's right.  103 degrees.  Mother of the year, right here!  He has Influenza B.  The flu.  The real flu.  It comes with an achy body - achy joints and muscles.  Hence,  the leg pain.  Kalvin never complains,  but this has been tough.  He cries a lot and feels miserable.  And YES, he had the flu shot.  Apparently,  there is a strain of Influenza B that wasn't included in this year's flu shot.  Great.  Lucky us.

Luckily,  Kalvin slept most of the day.  The big concern right now is getting the Tamiflu in him.  He won't take it orally.  He sniffs it out in any food or drink I put it in which really doesn't matter because he flat out won't eat anything.  It took me 3 hours to get him to chew his 2  1/2  Tylenol tablets - and he likes these.  It is a viscous cycle.  He has no appetite and feels yucky so he won't eat or take any medicine therefore,  he feels worse.  Weak and tired because he, well, has the flu and because he has not eaten.  We worry about his heart.  If he gets progressively weaker,  what will that mean for his heart?  For his recovery time?

When we arrived at the doctor's office, the nurse took his temp and weight and had us wait in the exam room.  She immediately flipped around when she looked at his weight and said she had to retake it.  I interrupted and said,  "He has lost some weight,  is he weighing around 66 pounds?"

"Yes," she replied.  "But it was 76 pounds in January.  That is a lot of weight for a child to lose.  Do you know why?"

I went on to explain his weight loss.  He has been very active this winter,  but he also has stopped eating sweets,  which is a good thing.  Right??  Slowly, he has stopped eating much of his meals, though - not a good thing.  We think it is anxiety.  He is afraid of throwing up,  not of getting fat.  Or so we think...he was getting into the shower tonight and his father commented on how skinny he looked.  In response to his father's comments,  Kalvin jumped into the shower,  smiled and said,  "You can never be too thin!"

I know everyone is thinking this comes from me,  the only woman in the house,  but honestly I never talk to him about dieting.  He use to love to do Jillian Michaels exercise DVDs and he would repeat some of her motivational lines,  but he hasn't done a Jillian workout in quite some time.  I honestly think he is just anxious and the fear of throwing up after eating too much has lingered from the Cheesecake Factory incident. Remember: Weight Loss

The doctor had a few great suggestions - cream cheese on crackers and other ways to sneak in some calories.  The doctor also explained to Kalvin that he cannot continue to lose weight.  He can maintain the 66 pounds - that is a good weight for his height,  but he cannot lose anymore.  He said he understood and would eat more.  He then came home and basically refused to eat.  He lost 2 more pounds and really had me scared.  A phone call to the doctor scared him strait and he began to graze on a few morsels...phewwww.   He is up one pound -weighing in at 65 pounds!  Hopefully this weight gain will continue.  The funny thing is,  the more I harass Kalvin about eating,  the more I am putting into my mouth!  And I certainly cannot afford the extra calories!!  I have single handedly taken down his entire Easter basket ...help me!

Kalvin indulging in some cream cheese and Saltines!

Weight Loss after Cath Lab



Yes, that is snow in our backyard on Easter!

 Kalvin started complaining on Easter that his scar hurt.  His Zipper.  Hmmm, I have never heard him say anything like this before.  I didn't really think it was anything heart related, but then I started to think...the stent.  We have an appointment on May 8th to make sure the stent is in place.  What if it moved?  What would happen?  Then he said his arm hurt.  My stomach tightened.  Isn't that a sign of a heart attack?  I tried not to let my imagination run wild,  but Kal never complains. 

Lucky for us,  for me,  my mom is a cardiac nurse and was on her way over for Easter dinner.  A quick exam by nurse Grandma and we discovered that the scar and arm pain were most likely a result of swinging the new and heavier baseball bat at baseball practice Saturday night.  Phewww. 

But that wasn't Kalvin's only symptom.  He has had some noticeable weight loss since his cath lab on January 16th.  Kalvin has been more active this winter thanks to his dad.  They have gone skiing and or skating every weekend on top of his already busy schedule of karate and PT. 

The weight loss really began after a visit to the Cheesecake Factory.  Kalvin enjoyed a big pasta dinner followed by some delectable cheesecake and then...and then some heaving.  I don't know if you have ever been in a Cheesecake Factory restaurant, but the tables are very close-intimate dining with your neighbors.  I glanced to my left and then to my right and envisioned Kalvin throwing up at the table and it wasn't a pretty sight.  I had to act quickly.  I wrapped my arm around Kalvin and maneuvered us around the many tables,  grabbing a bus-boy bucket we passed on our way out the door.  We made it outside.  Barely.  Kalvin threw up safely in the bucket...outside of the restaurant!  I think the embarrassment, and the fact that no one likes to throw up,  has made Kal stave off sweets.  We thought this was sort of a good thing at first and didn't make a big deal out of it.  Whenever we drive by the Cheesecake Factory or someone says the word "cake,"  Kalvin will begin to groan and put his hand up over his mouth and groan some more.  Then a little chuckle.  But part of me knows he is serious and we won't be dining at a Cheesecake Factory restaurant in the near future.  We hope this lack of eating is just a phase that he will soon grow out of.  After all, how long can one really survive without chocolate?

Lately though, Kalvin has been eating very small meals and his weight has continued to drop.  He took one look at his Easter basket and said,  "All chocolate?  That's it?  Ohhh, I can't look at it!" and he walked right past it.  Meanwhile,  Finn was all ready half way through his first chocolate Easter bunny!  I had to wonder if the baby aspirin Kal has been taking since his cath lab was making his stomach queasy.  It is small, but so is he.  This is just not the Kalvin we know.  Not even close.  

As the day went on, Kalvin became more lethargic and his face turned a pasty white.  He took two or three bites of his Easter dinner - mostly because he was trying to mimic his big cousin, Logan.   As we went upstairs for bed,  I decided I would weigh him.  I was shocked at the numbers I saw on the scale.  He had dropped from seventy six pounds on January 16th to sixty six pounds on March 31st.  Wow, ten pounds.  That is a lot.

The next morning I called his pediatrician and made an appointment.  Then, I did something I don't think I have ever done, I called his cardiologist.  I was assured that his weight was not a problem as long as it doesn't continue to drop and that it is a result of eating less and being more active.  And then I was reminded that; after all, this is a good thing because he was in the upper range weight measurement for his height.  The doctor also said his symptoms didn't sound like a cardiac issue.  Phewww.  If the stent had moved, which is highly unlikely, (but you know how I feel about statistics after we became the 1 in 100)  we would see breathing issues.  Serious breathing issues.  I explained, embarrassingly,  how I never call them and moved on to the pediatrician's office where I don't even have to spell my long last name anymore we call so frequently.

Children's Heart Foundation Walk -Boston

This beautiful video is by a heart mom and co-worker of mine.  We have become close through our heart stories.  Izzie's Hope will be walking along with Kalvin's Zipper Klub on April 27th in Boston to raise money for the Children's Heart Foundation. We will be joined by many family members-Emilio Straubel & Logan Straubel.  Please join our team!  Kalvin's Zipper Klub

Here is Isabelle's video.  Isabelle is eight months old.  Isabelle has HLHS.  It is one the most complicated congenital heart defects.  Help make a difference in her future as well as all children with congenital heart defects.

Moving forward with Dr. Kim’s (Children’s Hospital Boston) novel artery surgery

Kalvin enjoying a Five Guys cheeseburger after meeting Dr. Kim.  YUM!

    Kalvin,  Lars and I met with Dr. Kim at Children’s Hospital Boston to discuss Kalvin’s options for replacing the damaged portion of the femoral artery in his left leg.  I have to admit,  I wasn’t sure what to expect from Dr. Kim.  I wasn’t sure what he was going to say Kalvin’s options were and I wasn’t sure how his bed side manner would be.  After all, he is a Professor of Surgery at Harvard Medical School,  Director of the Pediatric Transplant Center and pioneer of this amazing artery stretching procedure,  would he be able to talk to Kalvin without scaring him?

Would the surgeon that pulled off a medical first:  A fourteen hour operation,  where he transplanted six organs simultaneously in a young girl,  who was battling a rare tumor that engulfed her entire abdomen,  have the patience to talk to Kalvin and answer allll his questions?  Would Lars and I be able to understand what he was saying?  Once again,  Children’s Hospital Boston demonstrated why they are the number ONE pediatric hospital in so many categories.  Dr. Heung Bae Kim was amazing.  Amazing.  He was so good with Kalvin.  He drew a picture of Kalvin’s leg  (on the back of Kalvin’s homework nonetheless)  and arteries in a way that made it easy for us all to understand the problem and the possible solutions.  Kalvin loved him.  Which is a good thing because it looks like we are going to be spending a lot of time with the Good Doctor over the next six months.

Kalvin being goofy for the camera and really savoring each bite!

We have decided to go ahead and have Kalvin be the fourth person in the world to have a balloon or fake tumor implanted in his abdomen behind a healthy artery.  The "fake tumor,"  when filled with fluid,   will expand like a balloon,  thereby stretching the healthy artery . After approximately six weeks of filling the balloon with saline and monitoring it via ultra sounds three times per week,  the artery should have grown long enough to give us the extra vessel needed to transplant and replace the damaged portion of his femoral artery.

Implanting the balloon like device, or fake tumor as I like to call it,  will require a two night stay at Children's Hospital - it is major surgery.   We are planning to do this once school is out - June 27th.   Hopefully, the balloon will stay in place and won't require any "adjustments."  Adjustments will require major surgery.

Transplanting the new vessel in his leg will require a week stay in the hospital.   Dr. Kim is estimating it to take six weeks to grow the artery around the balloon-like device bringing the surgery date for transplanting the artery to August 8, 2013.  The transplant surgery will take approximately six to twelve hours.  Yes,  a full day.  Twelve hours.  That is a long time.  A long time to be under anesthesia.  A long time to be in the waiting room.  A lot of hospital stays for one seven year old boy.   We have considered all of this.  We have given this a lot of thought.  We want to do what is absolutely the best for Kalvin,  but we also have to consider his emotional ability to handle all of this as well. 

Kalvin being silly after eating the whole cheeseburger!

The difference in this procedure from the other options available is that this will last a lifetime.  The result is a fix that will grow with Kalvin and last a lifetime…we hope.  There is only one other child that has undergone this surgical procedure and that was in January.  Of  2013.   The long term effects are unknown at this point. See the Boston Globe article about the first person, Ameigh,  here: Her medical hope grew within

This is a chance to give Kalvin back what was taken from him when he was three months old.  A fully functional left leg.  It is more than we ever could have hoped for.  One surgery and a lifetime fix.  We just hope and pray that we don't face many setbacks and that Kalvin  "gets his brave on"  and that it stays on and that he remains upbeat during the entire lengthy process.  Hopefully,  this won't be too much to ask of the "lucky bean".

If you haven't been following this story all along,  there are two prior posts that explain what happened to Kalvin's leg to require such a novel surgery.

 They are How we got here - contemplating-novel artery stretching surgery.

 And  If-we-dont-do-something-now...contemplating an artery stretching surgery.

And there is more on Kalvin's leg in this post as well:  A Silver Lining.

You can read about a similar procedure of which this procedure is based off of  (for the aortic coarctation)  in the New England Journal of Medicine, December 2012. 

A Novel Treatment for Midaortic Syndrome

I will be sure to document and post all his appointments in a timely manner so that you can follow along and be kept up to date.  I guess I can bribe Kalvin with a trip to Five Guys after each visit - that should ease some of the pain (and expand my waistline).  Kalvin has a CAT scan  (believe it or not,  his first) coming up.  The CAT scan will show exactly how many inches of artery we need to grow to replace the damaged portion of the femoral artery.  We will have the bean with us for sure!