Thursday, April 28, 2011

Punky - An Irish Cartoon Character Who Has Down syndrome

Umm... I'm in love.  How amazing is this?  I cannot wait to order the first season for Tommy and Joey!  

"Punky" is a new Irish cartoon series that has a main character with Down syndrome.  

The new series is aimed at pre-school children and features a six-year-old girl who lives with her family and encounters daily adventures.  

What an amazing time we live in.  I'm so excited for my little guys!

What if Superman Has a Broken Heart?

As a mama to a baby who has a few health problems, I walk a fine line.  I strive to be educated, but not paranoid.  Aware, but not obsessed.  I try to live in the moment, but I know that I need to stay on top of the latest research.  Be aware of signs to look out for.  According to my Baby Bible, Babies With Down Syndrome:  A New Parent’s Guide, approximately 40 to 60 percent of all infants with Down syndrome have some type of heart defect.  We knew about Joey’s congenital heart defect at just 24 weeks in utero.  At 28 weeks in utero we were told he would most likely require open heart surgery.  This was confirmed a few weeks after he was born.

There are other health issues that are also more prevalent in children with Down syndrome like leukemia, gastrointestinal issues and upper respiratory infections.  The heart issue is what weighs most heavy on all of our minds right now.  As we get closer and closer to his surgery date I find myself thinking about it more and then I go through the process of convincing myself that it will all be fine and that Joey is going to sail through his procedure.

In the meantime, I also have to balance out the time I spend with Joey at all of his appointments and therapies with spending time with Thomas Henry.  Tommy is such a precious 2 ½ year-old.  He has a wonderful sense of humor and he is a kind little boy.  He will do something ornery and then I will tell him to stop and he will say, “Don’t worry mommy.”   He used to constantly ask “Whaazzz  that?”  That has evolved into “What’s that man doing?”  Before we had Joey I worried about how I would love a second child as much as I love our firstborn.  I worried that he would not get as much attention or one on one affection.  Now, I almost worry more about how can I make sure that Tommy gets as much attention and time as Joey gets on a daily and weekly basis just based on need alone.

A few weeks ago I had two encounters where I met new people and we ended up talking about Joey and his heart.   In both cases the people I met told me that they knew families where one of the kids had a heart defect and then all of the kids in the family ended up having heart defects.  At first I blew it off and then in the middle of the night (when I do most of my deep thinking), I thought to myself—what if Joey’s heart defect has less to do with him having Down syndrome and more to do with him being our son.  What about Tommy?

It’s hard.  I don’t want Tommy to get lost in our world that sometimes seems to revolve around Joey.  And at this point in Joey’s life, it has to.  I try to do at least a couple of weekly one on one outings with Thomas Henry so that he gets some mommy time to himself.  It’s always entertaining for me and he loves it.

I ended up calling Joey’s cardiologist in Akron (he also has one in Michigan) and making an appointment for Tommy.   All I could think of are those high school athletes who die out on the basketball court or football field.  What if in the midst of taking care of Joey we were missing something going on with Tommy?  I would never forgive myself.

If Joey is Iron Man, then Tommy is Superman.  What if Superman also has a broken heart like Iron Man’s? 

This "tower" was Thomas Henry's Christmas present from One Step Ahead.  He took one major fall onto our tiled floor and this was a done deal.  It is his throne and he loves it and perches upon it every day.

On the day of his appointment I tried to dress Tommy in a nicer outfit, which is basically anything other than his cozy fleece pants.  I tried jeans and a cool baby GAP sweater.  He was not having any part of it.  He was grumpy from being woken up early (this is a boy who loves his sleep—if I wake him up instead of letting him wake up on his own he says to me, “Don’t mommy!”) and Tom finally let him pick out his own shirt, so we could get to his appointment on time, which was his Superman t-shirt.

We arrived at the doctor’s office and they first did and EKG to get a baseline.  Tommy was intrigued by the wires and stickers.  Next we saw the cardiologist (Dr. Khan at Akron Children’s is a phenomenal cardiologist.  He correctly diagnosed Joey in utero—we love him so much) and he listened to Tommy’s heart and examined him.   In addition to encouraging Thomas Henry to stop sucking on his two fingers, he examined him and listened closely to his heart.  He found a murmur, but said it was a “normal” murmur and that there was nothing to worry about. Whew! 

Just to be on the safe side he wanted to do an echocardiogram on Tommy and take a close look before he sent us home.  In the meantime, Tommy was having the time of his life.  He had both parents to himself for about three hours straight while all of these new adventures were going on.  If you ask him about the appointment and what the doctor said to him he says, “Doctor told me not to put my fingers in my mouth.”  Yup.  This was a walk in the park for Superman.

Tommy and I stretched out on the hospital bed and he watched Elmo while I fixated on the computer screen and images of his heart.  It brought back so many memories from being pregnant with Joey and all of the ultrasounds and fetal echocardiograms we did.  I stared and stared at the screen with my untrained eyes trying to figure out if there were any signs of a big hole in Tommy’s heart like Joey’s.   At one point I went to the dark place and convinced myself that like Joey, Tommy would also have to have open heart surgery and would bear the zipper badge down the middle of his chest like Joey will.  It was a scary place.  At least with Joey we have had a lot (probably too much) notice about his heart surgery.  We literally knew before he was born that it was probably going to be necessary.  But with Tommy, I just wasn’t prepared.  I could feel my stomach in my throat.  Only a few minutes after these dark, dark thoughts, the cardiologist popped in and said he had to run to the OR, but that so far everything looked great.  Thank. You.  Lord.   The sweetest words I could have heard.

If you give a boy a roll of toilet paper.....he's probably going to make a mess. 
And maybe find a stale pretzel in the couch.

A body in motion, stays in motion.

Mom!  There's a pretzel in the couch!


We finished the echo and Superman went back to running down the halls of the heart center and for once we were able to leave that office without making a follow up appointment.  Thank you, Lord, for this free pass.  It’s hard enough knowing that Iron Man has a “broken” heart and this mama probably could not have taken it if Superman had one too.  

Thursday, April 21, 2011


Sometimes you just have to make cupcakes.

A Junior League committee meeting for A Taste of the Tour was good enough reason for me!  That and the fact that one of our new members had a birthday and I was ready to put my apron on.

In addition to baking cupcakes, I also have a little video of my two cupcakes.  One of which seems to be doing a lot better...which means I should start packing for our trip.  Just found out where the urgent care is in Hilton Head, so that is very helpful and puts my mind at ease!

Back to the cupcakes (also-- if Brian from Crossfit Akron happens to read this, I only ate one cupcake at the meeting and I have witnesses...).

I found this awesome baking thingamajig at HomeGoods (a store that I hold close to my heart) and it basically makes regular cupcakes way cooler.

So I made up some delicious vanilla flavored cupcakes (I buy all my vanilla and spices at Penzey''s awesome!). 

Added some fun sugar colored sprinkles.

Stuck in the sweet little toothpick thingamajigs.

And there you go!  Happy baking!

Wednesday, April 20, 2011

A New Family Member

Iron Man Becomes a Fighter Pilot

Just when we thought Joey was over RSV, he started becoming a little lethargic.  On Monday he slept almost the entire day and only had two bottles in a twelve hour period.  This is not like our baby.  Usually he is awake all day and eats every 2-3 hours.  I took him to the doctor and his ears, glands and lungs checked out.

By Tuesday he had started hacking.  It was a wet cough at first and I thought that maybe it was the weird weather changes.   During the massive rain and thunder storms Tuesday night we rocked and held our baby boy while he hacked and hacked and hacked.  When he wasn’t hacking, he was crying.  We tried to fill up the bathroom with steam.  We gave him a little bit of ibuprofen.

Wednesday morning we were back at the doctor’s office.  That’s when Joey’s doctor told me that because he had RSV a few weeks ago he would now have a much more difficult time when he got colds or got sick.  He said this would probably be the case for the next two years.  That’s when he told me about the nebulizer.

Enter, Peter.  The penguin.  Tommy chose the name and that’s our newest family member.  Within just seconds flat of seeing Peter Penguin Tommy had taken him apart and also provided him with a new hat.  This Penguin does not stand a chance!

This penguin needs a hat.

His hat won't stay on!

Note the face and body covered in flour from the cookies we made Daddy.

At the rate we are acquiring new drugstore items (thickener, helmet, nebulizer) we are going to have to rent a U-Haul to drive to Hilton Head.  

Until the cough goes away Joey is getting his treatments every four hours.  Just when we thought he was good with rocking his Iron Man style he became a fighter pilot and I started talking like Darth Vader (something about steam and a gas mask that just makes you say, “Luke, I am your father”).    Looking good, Joey!

Why does it look Joey's giraffe is coming out of his ear?  I have no idea. 

Ultimately, I just hope that this helps him breathe better and makes his cough less stressful.  We’ve now had two cough so hard you puke episodes.  So far I’m beating the puking (knock on wood)—LoLo got the first puke bath and Tom got the second.  But puking and coughing aside, this latest bout of illness stresses me out.   We are supposed to finally go on our family vacation next week and do our getaway before we have to go on lockdown before his heart surgery.  Because of the type of heart defect he has, one of the main problems is the extra pressure from the blood flow from his heart to his lungs.  Without the surgery the damage to his lungs would be irreversible.  The concern with him having had RSV and croup and upper respiratory infections is that it will make intubating and extubating him more difficult.

This week’s illness just really hits home and makes me realize how truly important those four weeks before his heart surgery will be and how important it is that I protect him and keep him healthy. 

Until then, we have Peter Penguin.  Welcome, sir. 

Tuesday, April 19, 2011

Iron Man Update, Cousins, Sisters & Holy Week

Giving kisses is easier without the helmet!
Joey and Daddy

Joey has been rocking his Iron Man style for almost 3 ½ weeks now.  We still haven’t committed to how to add some flair to his sweet, blue helmet.  If we don’t make a decision soon, he might be out of it before we get his accoutrement on.  

I don't know if it is because I'm the oldest or because of my military background, but I am a big rule follower.  When the doctor told us Joey needed to wear his helmet for 23 hours a day I took him very seriously.  This week’s appointment came with excellent news—Joey’s head has already changed between3-4mm!  We started off with a 10-11mm difference and now he is down to between 7-8mm.  The goal is to get his measurement down to 2.5 or 3.0mm (ie: “normal”—love that word.  Still don’t know what it means).  In an ideal world he could possibly get down to the right measurement before his open heart surgery, but if not, it’s not a big deal.  

A visit from Miss Kelly!  Joey and Tommy adore Miss K.

Weeeeee!!!!  Not in focus, but what a great face!

Falling asleep in mama's arms.  Nothing sweeter.

If I had any doubts about getting the helmet in the first place they were all dispelled this weekend when my sister and niece drove up from Dayton for a last minute trip to visit the Iron Man himself in person.  My sister kept saying, “His head looks so good!”  And you know what, she’s right.  If you measure 3.0mm it’s not a large amount, but already his little head looks rounder and the slant does not seem nearly so severe.  Go Joey!!!  We let him take off his helmet a little bit more this weekend so everyone could kiss those fabulous cheeks and even I have to admit that it was so nice to get to see his precious little head more.
Aunt Lu Lu and Mallory playing with Baby Joey.

Precious cousins.

Sweet Mallory with Hershey Kiss.
It’s always such a treat when we get to see family.  Tommy and Mallory ran around the house and played on the porch until their faces were flushed and sweaty.  We all went to mass for Palm Sunday.  While the Priest was blessing the palms, Tommy asked (loudly- very loudly), “What’s that man doing?” Tom said, “Father is blessing the palms.”  To which Tommy replied, “I do it myself!”  You’ve got to love a two and half year old in church.  The boys and Mallory did a great job until the very end of Mass when was very quiet, right after communion, and Tommy piped up for one last giggle from the older ladies behind us when he told his daddy, “I gotta go now.”  Amen.

Mallory and Tommy had a blast!

Church is one of the few places other than doctor’s appointments that we take Joey.  I think we all need as many prayers as we can get and nothing gives me more of a sense of calmness and being grounded than going to Mass.  A lot of people in mass curiously looked at Joey’s helmet and I always smile—as if to reassure them that it’s okay.  It’s just a little helmet.  Nothing that major in the big scheme of life. 

I don’t know what it is, but as I get older and live more, I get really emotional at church.  Especially during the songs and communion.  We have so many blessings and so much to be grateful for and when I hold Joey or Tommy during church or get to attend Mass with some of our out of town family I feel it even more. 

It was so nice to see cousins together.  It’s too rare that we get to see each other and we missed seeing Carly and Uncle Brian (our other niece and my BIL), but it was a treat to get to hang out with Laura and Mallory.  Drink a glass of wine, catch up and take pictures of the kids.  Thanks, Lu Lu and Mal—we loved the time together.  Now I just need to track down Lu Lu’s photos since somehow I didn’t manage to get one of her and Joey or her and me.  Looks like we’re just going to have to get together again very soon! 

Yep-- I let Aunt Lu Lu take my picture with no make-up on and my hair half wet.  Doesn't matter-- these photos are clearly all about the most important subject--- Baby Joey!

It’s tough living away from my side of the family.  It is tough not having my mom or my sister down the street for those spur of the moment meals or get togethers.  Some days and weeks it is even tougher.  It also makes it even more special when we do get to see each other.  We’ve only gotten to take Joey home to Dayton once, but I’m hoping that once we make it through his surgery we can plan a big trip for him to make another Dayton debut and visit Grammy and G-Pa’s house and see his Dayton cousins. 

Thoughts about Joey and Holy Week

Joey was named Joseph David for a number of reasons.  My husband’s middle name is Joseph and both of our dad’s first names are David.  My father-in-law’s name is David Joseph, so we thought Joseph David would be a nice way to honor both grandfathers as well as my husband.  Also—Joey and I have the same initials, and that just tickles me to no end!

Finally, growing up in Dayton, one of our neighborhood friends was a boy named Joey Upshaw.  He was in my sister’s class and he spent a lot of time with us at our house.  He was one of the smartest boys in his class.  He was one of kind of kids who had the brains, the humor, the athletic skill and the personality.  Joey was hilarious, kind and a lot of fun to grow up around.  He was also an awesome big brother to his sister, Erica.

The second photo is my sister and Joey at their high school graduation.

When I was a third year law student at OSU, Joey was a senior in undergraduate at OSU.  I remember getting the call during Holy Week that Joey had passed away.  It was like a part of my sister’s and my childhood had died.  All those memories, all the laughter he brought to our house.   My heart broke for my sister, for Joey’s sister and his parents.  Going to the funeral of a young person always feels so unnatural and so unfair.  Death is hard to comprehend at any age level and especially when it is someone who had his entire life ahead of him.  Joey’s family still honors his memory through a golf outing and a website in his honor:  I think about Joey Upshaw a lot, but especially during Holy Week and Lent. I also think that perhaps my Joey has an extra special angel watching over him who shares the same name.