Tuesday, September 27, 2011

Brothers, Emergencies and Monkey Cupcakes

Brothers.  They had been coexisting quietly during the first year of Joey's life.  He didn't really bug Tommy too much.  That all changed in church last week.  

When Tommy wasn't looking, Joey reached out and grabbed Doggy right out of Tommy's hands.  Game on.

This is just one of Joey's many new emerging tricks.
He is now officially sitting on his own.  Our next steps are learning to get in and out of sitting other than flinging himself straight backwards.  This is why a pillow behind him is usually the safest route.  He has been working so very hard on this skill.  We have been working with our amazing Help Me Grow (aka- Help Me Joe) team and they have been cheering us on and teaching us as we go.  We have also started our new super intense private therapy schedule which includes Speech Therapy, Physical Therapy(Gross Motor Skills), Occupational Therapy (Fine Motor Skills) and Swim Therapy (building muscles!!!).  

Joey is also now officially clapping!  This is incredible for a boy who before his heart surgery would barely raise his hands up above his waist.  The other day we went to a birthday party at Chuck E. Cheese (which Tommy loves although he loathes the actual Chuck E. Cheese character. He told me about a dozen times, "I not talk to that big mouse, Mommy").  I was a little worried that the stimulation, noise and activity might be too much for Joey.  Was I wrong.  He loved it!  He was grabbing onto the joy sticks.  Trying to be a part of the action.  Trying to play the same games his brother was playing.  It was incredible.  He is incredible.  For the briefest moment I wondered if anyone was looking at him and eventually the moment passed.  We spent so much time last year in isolation that I am still not totally used to taking him out and about in every day situations.  On a daily basis I don't see that Joey has Down syndrome.  I just see Joey.  Sometimes when we are out in public I forget that he has it and then I'll catch someone looking at him.  Well.....so what if anyone anywhere looks at him?  He is ridiculously cute, so why wouldn't people look at him?  That's my story and I'm sticking to it.

Joey is officially holding his own bottle as well as his own Born Free sippy cup and is feeding himself his own bottles/cups at every meal!  Another skill he has totally mastered.

I actually had to bribe, yes, bribe, Thomas Henry to participate in these photos.  He is a child who is in a constant state of motion.  In the blink of an eye he will swoop down and spend a little time with Joey.  For these photos, two mini Tootsie Rolls were exchanged and the photo series ended up with poor Joey landing flat on his back after an aggressive hug.  Yikes.

Another emerging skill Joey has been showing off is waving.  Yes-- we think he might be waving at us.  He showed off his new pageantry wave at the Emergency Room last Wednesday night.

I was trying to get the evening pulled together and get both boys to bed.  Tommy was watching Curious George in my room, so I laid Joey on the queen-sized bed we have in his nursery-- I put him smack in the middle.  The spot I thought was surely safe because it is completely in the middle of the bed with a big fluffy, comforter pillowing all around him.  Snug as a bug. . .

I ran over to the bathroom to start the bath water when I heard it.  This sickening, loud and dense "thud".  But then there was silence, so I thought, "Surely that can't be Joey."  I was wrong.  That was Joey.  

He didn't cry.  That's what scared me.  He was on the floor and he was very, very pale.  Too pale for my liking.  Because I wasn't in the room, I had no idea how he had fallen.  Did he land on his back?  On his chest?  On his head?  His chest was my first concern and then his head.  Part of his post heart surgery instructions include no blunt force trauma to his chest/incision area. What if he had landed on his little sternum that was still healing?  

We were down at Children's ER about 10 minutes later as I illegally passed cars on Exchange Street in an effort to get to the ER as fast as possible.  Then I was a hysterical mess of a mom at the front desk.  It was all I could do to get out that he fell off the bed, that he had heart surgery in June.  I hadn't cried this much during his heart surgery up in Michigan.  At least during the stay in the hospital, I could tell myself that I had not done anything to cause him to have to have heart surgery.  The heart issues were "not my fault" in my book.  They had just happened.  This however-- was 100% "my fault".  If this precious child had survived such a wild first year of life and open heart surgery and then he is injured because I let him lie on a bed-- I thought I might die of my own broken heart.  

After I explained to the kind woman at the front desk what had happened, she said, "Are there any other health issues?"  I hesitated.  I never know if I should include that Joey has Down syndrome.  Is it a "health issue".  Yes?  No?  I never know.  I never know if it is obvious.  Finally,  I said, "Yes.  Joey has Down syndrome."  She said, "Get that baby up here!  I need to see him.  My youngest son is 29 and has Down syndrome."  My first smile of the night.  I can't tell you what it is like to be in this "club".  It's instantaneous.  When you meet another parent, there is just this sense of ease.  Relief.  Not needing to explain.  Not needing to put up any pretenses.  The nurses, the doctors-- they were all so kind.  More than one doctor came in to tell me that the same thing had happened to their child.

Joey got a chest x-ray to look at the wires in his sternum.  Everything was fine.  Joey's sternum is still solidly together and his wires are all in place.

In the meantime, Joey was charming the pants off of everyone he met.  He was waving, smiling, babbling.  We kept getting asked, "Does he always act like this?"  Fortunately, yes.  He was acting like himself.  Nothing was out of sort.  We took him home and I stayed in his room doing hourly checks to see if he would wake up easily and if he was breathing okay.

It was a long night, but by 10am the next day he was back at Physical Therapy doing his thing and I was saying prayers of gratitude that nothing bad had happened on my watch.

Tommy's 3rd Birthday
This is how Thomas Henry sleeps.  Under his pillow, frog-legged.  He is now a three-year-old and since we had just had a major, major party only 2 weeks before for Joey, we decided that Tommy would get a Family Day for his birthday.

First he had pre-school, which he seems to be getting more and more used to.  Fortunately for us, his teacher and the school have been incredible.  I worry that he is a "loner" because he tends to play alone, but I'm hopeful that he will start to warm up to the other children and play more with other kids.

Monkey Cupcakes
It was Tommy's turn to bring snacks on his birthday, so we made these chocolate-banana cupcakes.  We topped them with peanut-butter cocoa frosting.  The mouths are just Nilla wafers.  The ears are miniature Nutter Butter cookies.  The eyes are just chocolate frosting (although mini M&M's would have been really cute!).  The nostrils are also chocolate frosting and the mouths are red gel frosting.  They were really easy and we had fun baking them for his classmates.

After school we went bowling with just Tommy and then out to lunch.  We ended his big day with a Curious George cake (we bought the cake-- the cupcakes were a big enough birthday project).  A few days later we took him to see his first movie in a real theater.  The Lion King was his first movie and for almost an hour and a half he was enraptured.

Happy Birthday, dearest Thomas Henry.  


  1. I love the brotherly love pictures! Go Joey go on the sitting. Ooh, I can just imagine how your own heart stopped when you saw that Joey was on the floor. Yikes! I am relieved to hear that he is okay. Tommy's birthday cupcakes are so cute! I think I covered almost everything :)

  2. Justin fell off the bed once also- huge major guilt. :( And can I say I am so jealous that Joey is holding his own cup at meals!! Evan will rarely drink from it himself- I usually have to hold it for him and offer after a few bites since the boy wouldn't drink otherwise. Argh. And we made the same monkey cupcakes for Evan's first birthday. :)

  3. Great entry Jen! Scary about the fall off the bed. I fell down the stairs--steep wooden stairs) once carrying Courtney when she was about six-seven month--she bumped her head--I was a nervous wreck--she was fine but I had bruises all over my bottom for a week! LOVE the adorable monkey cupcakes--whew you are busy--don't forget to make a little tiny time for tennis! Mary Colarik


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