Thursday, March 31, 2011

Contest Winners

Quick update—RSV is still causing a raging horrible cough that for awhile made Joey cry every time he coughed.  Then that stopped.  Now the raging cough with crying is back.  His little eyes are so glassy and his super blonde eyebrows are all red.  Other than that, we are still at home and no crazy midnight trips to the ER.  Knock. On. Wood.  Thanks for the prayers—I think they are working!!!  Also-- he has officially graduated to wearing his rocking helmet 23 hours a day.  I have yet to "decorate" it.  Such a big commitment.  I need to make a decision soon!

Back to the Contest.

Since I’ve never held a drawing before I enlisted Tommy’s help in the process.  We basically took all the toys out of the toy bucket in my bedroom, dumped them on the floor, put the numbered penguins and 2 additional toys (the ball was #7 and the elephant was number #8) back into the red bucket and Tommy pulled out our first winner.

Our stand-ins to correlate to the comments.  Each comment was assigned a number.

Throwing all the toys in the bucket as Joey looks on.

Adding elephant (yes, Aunt Siobhain-- Tommy still plays with it!!!--Thank you!) to the mix.

Yes, it says winners.  When it came time to draw the numbers corresponding to the order of comments I couldn’t have just one winner.  We were having too much fun drawing, so we went with the first penguin drawn……drum roll, please……..and Kari (ie: Penguin #2) is our First Place Contest Winner!!!!

He reaches in for the first pick.....

Who is it???

Number #2!!!  Our first winner!

Kari—please email your mailing address to and I will put your awesome Starbucks (RED) $20 card in the mail tomorrow! 

This was a lively scene right after bathtime for both boys and right before bedtime.  I’m pretty sure it is what riled them both up and caused much later than normal bedtimes. 

Tommy was not content to stop at just pulling one toy out—we had to pull all the toys out!  That’s when we decided that we needed a Second Place Contest Winner as well.  So, as we got closer and closer to the bottom of the bucket I decided that whichever number was pulled out last would also be a winner.

Diving headfirst into the task at hand.

Penguin #1 (which correlated to comment #2-- make sense?) wins second place!!!

Team Lando…… you are our Second Place Winner!  Please send your email address to and I will email you a $10 Starbucks e-card since I have no idea when I’ll get to Starbucks and I already purchased the first place card.

Thanks again to everyone for your comments and for taking place in our first contest!  For many of you coffee is a lifeline like it is to me.  For some of you it's even concealer (no joke!  Read the comments!).  

I almost didn’t go out on a second date with my husband because he doesn’t drink coffee.  Dealbreaker?   Showstopper?  It almost was!  I grew up watching my dad make coffee every morning for my mom.  When we go on vacation he always makes sure to locate the first hot cup of coffee and bring it to my mom.  To me it was the absolute sign of true love.  So, Tom and I went on a very casual (ie: I was kind of dating someone else, but it was almost over anyways) meeting/date at Starbucks.  I ordered a grande.  He ordered hot tea.  I said, “Don’t you drink coffee?”  He said, “Nope.  I drink Coke.”   Screeching tires coming to a stop in my mind.  WHAT?  This guy doesn’t drink coffee?  This is never going to work.  How would we read the morning paper over cups of steaming java?  

This was until I told my mom about it and as only a mom can do, she told me I was being “shallow”.  Ouch.  It mostly hurt because she was totally right. 

Eight years later he still only drinks Coke and it’s all good.  

Wednesday, March 30, 2011

Joey RSV Update

Hi there! 

Just a quick update on Big Joe.  He seems to be doing remarkably well with both his helmet and RSV!  It’s incredible.  Monday and Tuesday nights were the worst nights so far, but isn’t nighttime the worst for everyone when you are sick?  Last night I held him as he cried for about an hour and then finally fell asleep.

He seems to be handling his hacking cough really well and despite his insulated helmet, he still has not developed a fever.  His breathing rate seems to have finally calmed down a little and it doesn’t seem like he’s working as hard to breathe anymore.  Whew—that’s the sound of me letting out a huge sigh of relief.

Fingers crossed and praying that he continues to get better and does not take a turn for the worse as the doctor warned us would likely happen. 

To distract him from the unfortunate events of this week, Thomas Henry and I decided it was time for Joey to try his new helmet out for real and we put him in his U.S. Navy football jersey.  Thank you Captain Jim and Diane for the awesome Navy jersey you sent to Joey.  Little did we know when you sent it to us after he was born how truly appropriate it would be.  Now we have the helmet to complete the look.

Tommy stole Joey's helmet to see if it fit.

Trying so hard to squeeze it on!!!

Mom-- when are you going to learn how to focus your new camera?

Ignore the rosy cheeks and runny nose, but enjoy:
 #4, Joseph David, weighing in at an impressive 19 lbs 2 oz (as of yesterday’s doctor appointment), awesome baby thighs, and a look on his face that can best be expressed as “Mom—really?”. 

Also—don’t forget to leave a comment to be drawn for the Starbuck’s Card contest!  There is still time!

Clearly Joey is still eating plenty of food.

Hey Bro-- how are you feeling?

Pre-game stretches.  Am so proud that he has started grabbing his toes-a big milestone!

Thank You & First Contest

If you are reading this—thank you.  Thank you for your comments.  Your encouragement.  Your emails.  Your support.  Your prayers for Joey.  Your friendship.

Thank you for giving me a voice.  A place to finally be a writer.  Instead of sitting around and trying to dream of an entire novel to put together, you allow me to write a little bit, chapter by chapter, thought by thought.

To celebrate this first week of blogging, I’m having Cowgirl Up’s first contest.

Enter for a chance to win a $20 Starbucks Gift Card.
  •         Just leave a comment on this post and tell me why you love coffee.
  •          Deadline to enter is Thursday, March 31st at 8 pm ET.
  •          One winner will be selected at random and announced sometime later this week.

This could be yours!  Thank you for following my blog!

Tuesday, March 29, 2011

The Big, Bad Wolf - RSV

Finally falling asleep after a long day of coughing.

I had never heard of RSV before Joey.  At our one month appointment with his Cardiologist back in September we had the usual echocardiogram and on our way out, his Cardiologist (an incredible doctor, by the way, incredible—he accurately diagnosed Joey’s heart problems at 24 weeks in utero) said that Joey should get the RSV shots.  He also said Joey would need to get them next year as well.  RSV is respiratory syncytial virus.  For most of us it just causes symptoms similar to the common cold.  For kids who have Down syndrome or are infants it can sometimes be a much more serious infection that is associate with inflammation in the lungs, wheezing and difficulty breathing.  It can also cause Croup, ear infections and pneumonia.  Here’s what I read about the symptoms:

RSV Characteristics and Symptoms
  • Chest congestion and wheezing
  • Dropping O2 saturation levels
  • Difficulty breathing or rapid breathing. Apparent labor in breathing
  • Coughing
  • Temperature
  • Look for signs that the patient is having an O2 problem. This can be seen in a number of ways. These include paling of skin or blue color around the lips

Most kids with RSV can be treated at home, but a small part of the population—somewhere between .5 and 2%-- need to be hospitalized and closely monitored.  Infants, like Joey, who have congenital heart disease, are at a much higher risk for developing a severe case of RSV (same with preemies and babies who have chronic lung disease).

That is where the RSV shots came into play.  To qualify, kids have to be premature, have chronic lung disease or have congenital heart disease.  We started the approval process back in September so that Joey could get his first shot in October.  The treatment goes for six months and every month from October through March he has gone into the pediatrician’s office to get his monthly dosage.  The medicine is called Synagis and it is a “monoclonal antibody against RSV”. 

Ironically, Joey just got his sixth and last set of shots for RSV one week ago.  Here we are, two days before April 1st and he has RSV.  Lord, help us.  We’ve kept him home from church, home from family events and home from any type of fun outings. Basically the only places Joey gets to go are to doctors’ appointments.  We knew the Synagis shot wasn’t a silver bullet, but we were told that it was at least 80% if not more effective against getting the virus.

Joey's amazing Synagis nurse giving him last shot before the next RSV season.

Then there is the bitter pill of the Synagis itself.  It took 8 weeks to get approval from insurance for him to even get the first month’s shot.  But before we could get the shot I received a phone call from our insurance saying I needed to pay them $1,100 before they would ship the medication.  Huh? According to them, the medicine costs $5,000 and up per treatment.  As Joey gets bigger, he needs more medicine each month.  It was insane.  I spent hours on the phone trying to figure out how to get the cost down.  We finally got a “savings” card that is worth $225 each month toward our costs of the shot.  Since his first shot, every month we’ve received a different price for the medication.  It always averages somewhere between $500 and $1000 per month.  That being said, we told ourselves that it was worth it and we needed to try and protect Joey as best we could.  Lesson learned here is be diligent, keep calling and ask all kinds of questions before you ever agree to the first quoted price.

Since September Joey has had three major scares.  All three involved chest x-rays and the worst was when he was hospitalized over New Year’s with Croup and received breathing treatments and oxygen in the hospital.

This time, I truly thought we were out of the woods.  At least where the RSV stuff was concerned.  He got his last shot last week.  Throughout RSV season we’ve been crazy about keeping him away from other kids who are sick (although big brother Tommy had Croup last week and there was no separating them for an entire week).  Then, the big, bad wolf showed up at our door.  The dreaded RSV.

I’m hopeful that the months and months of those painful shots (it’s super thick medication) will pay off and that his case will not take a turn for the worse.  I hope and pray that his breathing improves and that the horrible cough starts to go away.  The RSV comes right as he has to start wearing his rocking blue helmet 23 hours a day.  This little man needs a break.  Our pediatrician told me today to be prepared if it takes a sudden turn and to keep a steady eye on Joey’s breathing rate.  He also said he would probably see us again this week.  I hope he’s wrong.

Unfortunately, along with having Down syndrome is a tendency for our little ones to have much smaller ear canals and smaller breathing passages, which makes handling the super sticky RSV mucus more difficult.  His ear canals are so, so tiny the doctor couldn’t even see his eardrum today.
Right now, Joey has a wicked, wicked cough that I can tell hurts his little chest and throat.  He’s working pretty hard to breath, but we haven’t crossed that line of truly labored breathing.  He sits in my arms and cries a small, raspy, wheezy cough.  I just worry about his little heart and the holes in it and how that already makes his breathing a little bit tougher than normal.  So, we cuddle and give him lots of love.  We count his breaths per minute.  Sixty is okay.  Sixty-five and up are not. 

If you think about it today, please send Joey a little prayer that he heals quickly and does not have to visit the hospital.  

Taking a break from Mr. Helmet. 

Saturday, March 26, 2011


Today is short—it’s more of a photo essay.  Photos of brothers.  Photos of unconditional love.  Sometimes in the midst of all that is going on, the simple beauty of siblings and family gets a little lost.

Tommy put his doggy on Joey.  Doggy is Tommy's best friend.

Our precious 2 ½ year old with his chocolate colored hair and blue-green eyes.  Our miracle 6 month old son with his fine blondish/brown wisps of hair and startling blue eyes that seem to belong to someone much older than an infant.  Seeing them together and seeing them start to be a pair.  Oh—it is breathtaking.  Pure.

They are quite a pair.  I’m so grateful they are mine.

This was impressive-- Joey grabbed Tommy's microphone cord as Tommy ran by. Go Joe!!!


Friday, March 25, 2011

How To Become Iron Man ~Part 2

It was a long day.  Physical therapy this morning and more new ways to stretch Joey’s little neck.  I also learned that what I thought was his “good” side is really his “bad” side and all the progress I thought we had made this week was on the wrong side.  Torticollis fools me again.  The good part was that our incredible Help Me Grow coordinator, Tina, brought our new physical therapist, Denise, and she was wonderful.  I learned so much in the short hour we had together.  To first place my hands on Joey’s shoulders and warm up his muscles before I start trying to stretch them.  Things like how to stretch his neck using my cheek so we are cheek to cheek instead of me pushing his tiny little shoulders down.  It was more to think about and more to remember, but such great information.  Even better was that Tina whipped out her Flip video camera, videoed me doing this new form of stretching and emailed it to me before she left.  Awesome! 

After PT it was time to pack up Joey and head down to the hospital.  Helmet day.

After an hour of PT and no nap he was a tired little man.  When Joey gets grouchy it actually makes me giggle a little.  When you have a child who has Down syndrome you often are told things like “Oh, they are such happy people.”  Let me tell you right now—people who have Down syndrome are not happy all the time.  They have an entire range of emotions.   You’ll see the photos—this guy was definitely not happy.

Every single time we have a doctor’s appointment I walk in with the ridiculous and na├»ve idea that a) the appointment will start on time and b) it will probably only last 15-20 minutes.   I know.  It doesn’t even make sense.  You would think I had never taken a child to the doctor’s office before.  I know deep down that echocardiogram appointments are going to average 2-4 hours.  Same with the pediatric ophthalmologist.   Synagis vaccination—you are looking at nothing less than 90 minutes. 

Joey's Last Synagis shot with his wonderful nurse. She is an angel.

Today’s appointment started with the news that it would be the longest of all of our appointments with Brian who shaped Joey’s helmet.  Three hours later….

We put the helmet on.  Tears.  Bright red face.  Trying to calm Joey down.  Brian made a bunch of marks and then headed back to the room to shave off parts of the helmet and shape it up.

Here we go.

Almost there.

And, it's on!

Taking a short break.
We tried the helmet on again.  Tears.  Bright red face.  Trying to calm Joey down.  Brian takes the helmet back again.

Round Two

Here it starts...

And we have takeoff.

We tried the helmet on again.  Tears. Bright red face.  Trying to calm Joey down.

One last time.

Now we had to sit there for an hour to see how he reacted and whether or not there were any painful red marks on his head.

So tired.  Waiting to see how he does.
Brian was remarkably nice.  He sat us down and explained that people would probably stare.  He said people would ask questions and want to know why Joey had a helmet.  I’m about 100% sure he wasn’t prepared for our irreverent comments and humor (it’s called coping mechanism).  My response was that I would simply chastise any parent who asked and demand to know why they didn’t get their children helmets to protect them.  Tom’s comment was that we would simply tell people the truth—that Joey asked for the helmet.

The humor continued.  Brian told Tom that the helmet would develop a pretty strong odor and that it would probably remind Tom of when he played football.  If you know Tom—this is the most hysterical comment of the day.  Tom probably could have played football (QB?  Tailback?  Kicker?), but he is more of an expert in the arena of gentleman’s sports.  Golf.  Skiing.  Badminton.  Darts. Billiards.  You get the picture.  If it’s a “sport” that you can have a cocktail and play at the same time—Tom is very good at it. 

Now we get to the actual helmet.  We were given helmet “swatches” at our first appointment to pick out the color.  We live in Ohio and the idea of an Ohio State helmet has been thrown around by multiple people.  As a proud graduate of the law school at Ohio State and a previous season ticket holder (both basketball and football) I loved the idea.   However…. And this is a big one…. Joey is having his open heart surgery at the C.S. Motts Children’s Hospital at the University of Michigan.  I have no doubt that the professionals at the U of M pediatric cardiology department would probably look past an Ohio State helmet on our little guy; we thought it was probably best not to even go there. 

We chose blue.  The swatch looked royal blue.  The helmet is a lighter blue than I pictured, but that’s okay.  I think we may be going with a Cadillac theme (4th generation Cadillac dealer father) and I have a feeling that is one that will play well in either Ohio or Michigan.

So, we have a five day ramp up schedule.  We start with an hour on and then an hour off.  It goes up to three, then four, then five, then eight hours on and one (yes, one) hour off until Joey is wearing his helmet 23 hours a day.  The way I look at it is that it will give us something to do and think about until we get to his heart surgery.  A distraction of sorts.  Tommy thought it was pretty cool and told me that he wanted a helmet.  Then he tried to free Joey and pull open the Velcro band.  Isn’t that really what brothers are for?  

Time to go home.

Thursday, March 24, 2011

How To Become Iron Man ~Part 1

First, start with back sleeping.  Then add a little bit of Torticollis.  Mix in an uterus abnormality. Finish with a premature birth.

Most infants spend a lot of time on their back.  The weird thing is—Joey loved sleeping on his tummy when he was a newborn.  Of course we only let him do it when we were right next to him, but he spent a lot of time on his tummy.  That leads us to the Torticollis, which means “twisted neck”.  The baby’s head is tilted to one side while the chin is turned to the other side.  Yep.  Joey has Congenital torticollis, which is most often due to a tightness in his muscle that connects his breastbone and collarbone to his skull.  From what I’ve read, the tightness might be caused by how he was positioned in my “uncooperative uterus” (an entirely different story for another time that involves an “incarcerated uterus” and Tommy’s birth story) or because his muscles were damaged during delivery.  He arrived via a C-section, so I’m guessing that it was my severely tipped uterus that caused the problem.

Joey was delivered at 37 weeks, which while not technically premature, was still early.  According to his plastics doctor, baby’s skull bones harden dramatically during those last few weeks.  When babies are born early, their heads are exposed to hard and flat surfaces before they are ready and are more prone to flattening. 
Iron Man wouldn’t be Iron Man without his helmet, would he?

That’s our next step!  As with every new diagnosis, I’ve been in denial about this one as well.  Each time something new pops up I think—“I can’t possibly deal with this.  This will never work.  This isn’t happening.”  Then slowly it sinks in and slowly we call the grandparents and tell them the latest and slowly it starts to become part of our normal.  For some reason, this one has been tough.  I don’t mind the helmet.  It’s short-lived and if it helps to round out Joey’s cute head and help his face to be symmetrical again then it’s totally worth it.  It was just finding out the diagnosis and thinking “How will they do his open heart surgery if he has to have a helmet on his head?”  Rational?  Not at all.  The helmet comes off and from what I’ve read will develop quite a lovely odor all its own. 

The Torticollis part has been tough.  It involves weird awkward stretches we have to do with Joey’s neck as many times a day as we can fit in (the OT/PT people recommend at every diaper change—at current count that’s about 12-14 times a day).  It involves pushing his cute little cheeks to the side and trying to hold down the opposite shoulder all while distracting him and singing him the ABC’s.  God bless this little guy because he always smiles when I sing and that is saying a lot because singing (on key) is not a talent I was blessed with. 

This is where the pity party sometimes starts in my mind: “How can I do all his stretches?  How can I get him to all his appointments?  How can I remember to order more thickener so he doesn’t aspirate?  How are we going to ever make it through his heart surgery?”  Couple those with the non-Joey issues running at warp speed through my mind at any given moment: “I’ve got to pay the bills tonight.  Is the laundry done? Are we out of milk?  Did I put my out-of-office message on at work?” and sometimes I start to get a little overwhelmed.

Then we go to the Children’s Hospital and see one of Joey’s many amazing therapists, nurses and doctors.  That’s when I start to feel ashamed for my silent pity parties because I see beautiful children who can’t walk and are in wheelchairs.  Children with NG tubes.  Children who have lost all of their hair from chemo.   Children who wake up and fight the good fight every day.  True super heroes.  I guess it’s really all about perspective.  I think we’ll take our Iron Man helmet and some extra stretches this week and be grateful.

The Iron Man Process

Trying to chew on this weird white sock they put over my head.

Scanning his head.

That was a lot of work!

Joey's beautiful head

 Picking up his helmet later today!