Annual Cardiology Check-Up

 

Matthew had his annual cardiologist today.  He gets to have an electrocardiogram, echocardiogram, and a visit with the specialist once every year.

Remember his mitral regurgitation (leaky valve)?  Last year, it was “moderate,” and they wanted to watch it closely.  This year, it is “trivial.”

And that pin-hole between his ventricles that they were watching?  It is gone!

In fact, his little heart is doing so well, we can now go 2 years between cardiology check-ups.

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Not too bad for “zero percent chance of survival….”

. . .

There is so much going on around here … so much to write about.  New house, new baby, new puppy, new flock of chickens, new routines … I apologize that I don’t keep this blog very well updated.  For now, just taking care of my children and my family takes all of my time and energy.  At the end of the day, I can barely form a complete thought, let alone write one down!  But, we are very, very blessed, and for now, it is enough.  Patient readers, thank you for continuing to care about our precious little boy and our family.  I will update when I can.  

 

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Annual Cardiology Check-Up 2013

This week, Matthew saw his cardiologists for his annual EKG, Echo, and consult.

The issues they check on are these:

-When the hole between his ventricles healed, it left a pin-hole opening that the surgeons decided NOT to fix.  The part that healed does not look smooth and “normal,” but rather rough, like scar tissue.  They don’t anticipate this will cause any problems, and both of these issues have been not changed over the past 4 years.  The only new recommendation this year was to give him antibiotics prior to any dental work, to avoid bacteria clinging to those rough areas.

-When the surgeons fixed the valves in the middle of his heart, they could not do a perfect job.  His mitral valve is leaky, and he lives with “mild to moderate” mitral regurgitation.  This, also, has not changed over the past 4 years.  Last year, however, they noticed an area of his mitral valve that was stiff and rigid, which if it progressed would eventually lead to the need for a valve replacement.  This year, they did not see any stiffness!  Hooray!

Overall, they said his heart looks great!  His heart, along with the valves and all the repairs seems to be growing with him.  There is still no need for any long-term medication.  Eventually, he may be on a low dose of a diuretic, just to preserve his valve function for as long as possible.

We continue to be amazed at the way God has healed, and continues to care for, this little guy’s heart.  God must have big plans for you, my Matthew!

So, now that that is over with … we can move on to the things that are really important:

GONZAGA IS NUMBER ONE!

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GO ZAGS!

In the Father’s Arms

To all you wonderful people.

It pains me to bring you all the news that baby Beckett lost his fight with his heart condition yesterday. Michelle and I believe with all our souls in the power of prayer. I want to personally thank each of you for doing your part to pray for our family. My initial prayers were answered when Michelle found this blog on Baby Mathew. Michelle and I were losing hope and lost and then she found all of you! Thank you for your blessings, kind words and heart felt prayers. I love Michelle more and more each day, her strength to carry on is nothing short of amazing to me.

Ben

Baby Jacob

Baby Jacob

This sweet baby boy is Jacob.  (His mommy’s sister was a good friend of mine in high school!)  Jacob is having surgery to fix his heart early Monday morning.  Please pray for him, his family, and his doctors.  His surgery will be very similar to Matthew’s, and will even take place at the same medical center!

Like most of us, Jacob’s parents started their journey with him feeling pretty alone.  His mom, Susan, told me she was surprised to learn just how small the Down syndrome community is.  Here in Eastern Washington, there just isn’t much.  If it weren’t for you, my readers and on-line support group, I don’t know what I’d do!

Susan has also started a blog, The Ups and Downs of the Allred Family. They have already discovered that their lives have been forever changed, for the good.  In her last post, Susan writes:

“…What is it about this little child that draws me to him?  How can it be that after only a few short weeks I cannot imagine (or remember) my life without him? This one little soul, who has not spoken one word to me, hasn’t taken a single step, or even kissed my cheek had managed to utterly complete me…”

Please stop by their blog to check on baby Jacob.  Offer your support and encouragement.  Pray for them, and let them know that they are in your prayers.  I know that their whole family appreciates it.

. . .

Quick update on our family:

It has been quite a week.  All 3 boys are sick with a nasty cold, and as usual, Matthew was hit the hardest.  Last night, we were close to taking him in to the hospital because his fever was high in spite of Tylenol and Ibuprofen, his breathing was labored, and he just looked about as miserable as can be.  Aaron patiently held him in the recliner most of the night, and as he relaxed and slept, his breathing was more comfortable.  He was a little better today – taking fluids, eating a little, and even treating us to some smiles.  We’re hoping and praying for a restful night for all of us.  Thanks to good neighbors and my wonderful parents for helping to take care of us.

On top of it all, Wednesday morning held an emergency-room adventure for Micah and I.  “Superman” here was twirling in the living room when he fell into an end-table.  His bottom teeth sliced all the way through his lip.  Thankfully, no stitches were required – the doctors were able to use “super-glue” to patch up our little superhero.

Happy Heart Day!

Matthew,

Today feels like a celebration – a “birthday.”

Two years ago today, your heart was repaired.  This was, of course, after you had shocked us all by repairing most of it on your own, earning you your forever nickname, “Miracle Matthew.”  Still, without the incredibly skilled hand of your surgeon, you would not be with us today.

May 8, 2008 was a day I once feared and dreaded – you will never know how hard it was to send you away into that operating room, or to see you fight through your recovery – but now it is a day to treasure and celebrate!  Last year, (Was it Really Only a Year Ago?) I wrote about how far you had come in the year since your surgery.

This year: a quick sentimental look back, then a celebratory update!

Your 8-month birthday – May 14, 2008. 6 days after open-heart surgery:

Your face looks so artificially round to me – after weeks of intensive tube feedings to get you ready for surgery – to try to get you up to 10 pounds!

Now:

The scar on your chest is just a white line – still there as a reminder of all you have been through, but subtle now.

I can’t begin to describe what a blessing you are to us.  You are a gift.  A gift from God.  I love watching your personality develop and emerge, and I love the person that you are, and the boy you are becoming.  Your heart is incredible – and not just anatomically.  I’ve never seen a 2-year-old with the concern for others that you have.  If Micah is fussing or pouting, you rush over to give him a hug and a gentle pat on the back.  If Jesse starts to fuss, you run to me to sign “baby,” before giving him a hug, and sometimes a toy to cheer him up.  You greet me by running to me with open arms, giving me your own uniquely wonderful full-body-snuggle-hug.  Your hands are gentle and sweet.  You get so excited to see Daddy come home from work that you always greet him running, too.  You can sign “Daddy Home,” and it’s one of your favorite parts of the day.

Speaking of signs, you learn new ways to communicate all the time.  Sign language has been so helpful, and here are the latest additions to “the list” of signs you know and use:  Bread, Cracker, Dinner, Napkin/kleenex, Swing, Home, Ouch, Bubbi (Aaron’s mom), Shoes, Comb hair, Brush teeth, Make, Flower, Tiger, Sheep, Cow, Starfish, Squirrel, Frog, Duck, Stop, Go, and blowing kisses means, “Goodnight!”  That brings your total number up to sixty-eight signs!  Way to go, Little Love!  (You can also shake your head “no,” but I’m not sure we can count that as a sign!)  If you don’t know the sign for something, sometimes you will use something that sounds close.  You signed “cracker” for “tractor” the other day, and you use “ouch” to mean “out,” but we’re working on that.  I love the creativity and ingenuity, though!

You also have enough sounds now to make a list:  “Dada,” “Papa,” “No.”  You try to say “Go,” but it still sounds a lot like “no.”  You can “vvvvmmm” like a car, say “bah-” for “bounce,” “Hahh-” for Hot, “CCCCKKKKK” for crashing blocks or roaring lions, snort for noses, “oof oof” and panting for dogs, and the funniest squeak for a quacking duck. “Dat-Dat-Dat” is for dotting colors with markers or marching animals along. “Up-up-up” when you are climbing, “on-on-non-non-on” when you make it, and “Dow” for Down.  “Haa!” when you see someone, “Uh-oh” when something falls, “Huuu-” with your sweet hugs, and “Shhhh” for quiet time.

Your therapist keeps asking me about “pairs of opposites” that you understand, and “self-help skills.”

Well, you know a lot of opposites:  yes/no, up/down, hot/cold, open/closed, stop/go, on/off, hello/goodbye, in/out … and I’m probably forgetting some!

And, your “self-help” skills are coming, too.  You wash your hands without much help.  You take off your shoes and try to put them back on.  You feed yourself with a fork and a spoon … but this is my favorite:  You ask for a kleenex, blow your nose by yourself, wipe your nose a couple times, then hand the kleenex back!  You also cover your cough with your elbow!  … impressive for any 2-year old!

We’re so very, very proud of you Matthew.

May we never forget the miracle and the gift that you are.

Annual Cardiology Check-Up

Yesterday was Matthew’s annual cardiology check-up.  Height: 2’7″   Weight: 23 pounds.

The first thing Dr. Anderson said when he walked in the room was, “How is Miracle Matthew?”  I really appreciate that he always remembers, and comments on Matthew’s miraculous healing.

Matthew cooperated very well for the echocardiogram – he just relaxed, sipped on a bottle, and watched the “Baby Einstein” video up on the screen.  ( … not my favorite video series, but that’s a topic for another time!)

During the echo, the technition said, “So this is Matthew!  His name has been brought up at many a cardiology conference.  I looked back in his file – it’s really interesting to read the surgeon’s reports … he has had quite a journey, hasn’t he?”

It was a good reminder to Aaron and I that he really is a miracle, and that, at one time, his heart really was that bad.  Sometimes our journey seems like a bad dream … the memories a little foggy over time (or maybe we were just living in a constant foggy state?  That could be true, too.)  Living with Matthew every day, we often see him as “Matthew the Menace: a force of destruction like you’ve never seen,” and forget that it’s a true miracle that he is able to be a menace at all.  Cardiology appointments are good reminders that he is Matthew the Miracle:  a gift from God.

The test results?  His heart still looks good – the patches are doing well, and there are no adhesions (extra tissue bands) around the valves, which can sometimes form after surgery.  His mitral regurgitation (valve leakage) is “mild to moderate,” but not significantly worse than 1 year ago.   If the leakage causes the left side of his heart to become enlarged, he may need a valve replacement down the road.  For now, though, the left side of his heart looks just fine.  Considering that 2 1/2 years ago, we were told the left side of his heart was too small to support life, it seems ironic that now we’re worrying about it being too big.

There is nothing we can do about it, though – except to keep praying.  Matthew is in God’s hands, as he always has been. 

…and that’s all the heart news until next year!

Was it really only a year ago?

My little Matthew,

Just one short year ago, you were such a different baby.

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You were so sick, so fragile, and just didn’t have the energy to do much at all – including eat for yourself.  Yet, your smile was so sweet, and your eyes sparkled with a life that we loved more than you’ll ever know.  The fact that your future was so uncertain broke our hearts.

But, one year ago today, that all changed.  On May 7, 2008, a skilled surgeon repaired your heart – a day I once feared and dreaded, but now I will always treasure.  You sailed through the surgery, recovered more quickly than we ever thought possible, and immediately embraced life with fantastic energy and vigor.  You have come so far in the past year, that it is hard to believe it has only been 12 short months.

Now, look at you!

oops – where did you go?

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Oh!  There you are!

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You are constantly on-the go, walking (working on running!), climbing, playing, laughing, and getting into whatever kind of trouble you can find.

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You immediately win over every person you meet, earning lots of laughs by showing your muscles.

Matthew showing off his "muscles" with a friend

Matthew showing off his "muscles" with a friend

Your sense of humor is fantastic, and you love making others laugh.

You can communicate many things to us, using sign language to tell us when you are hungry or thirsty, want more or are all done, or want to take a bath.  You also sign and say “Da-da,” and you have a special place in your heart for your daddy and your grandpa.  It is fitting that one of your first words was “Pa-pa.”  You will say “Ma-ma,” but only if you are upset and really need something from me!

Your favorite games are peek-a-boo, chasing me and your big brother, tickle-time and blowing raspberries, pulling all the books off the shelf, and, of course, laughing at silly boy-noises.  You adore your big brother, and can make a game out of just about anything with him.

And, best of all, you are healthy.  For a year now, you haven’t needed anything more than an occasional antibiotic for an ear infection.  We only see your cardiologist once a year for a check-up, and we don’t fear for your life when you get an cough or cold.  You have come so far from the baby who was only expected to live a few hours – you are such a miracle!

You truly are a blessing and  joy, and I am so grateful that God gave us YOU.  Thank you, Lord, and to You be the Glory!

We love you so much,

Mommy & Daddy

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Today is also a “new beginning” for our family, as we move into our first house!  If you are feeling nostalgic (or are just curious) what happened one year ago, the day Matthew’s heart was surgically repaired, you can check out the archives for May 2008, or follow these links to my posts from that day: