April is Coming Out Month

Since Joey was born this beloved child has been sequestered.  The first two months it was under strict orders.  If he got a fever (actually, if any newborn gets a fever) he would be hospitalized.  So while he had lots of visitors when he was born, once we got home, we tried our best to keep him pretty isolated. 

Those first two months he had two chest x-rays.   Then we found out about the aspiration (more details about aspirating and thickener ideas on another post).  We threw caution to the wind and hosted Joey’s baptism and attended all family Thanksgiving, Christmas and New Year’s festivities. 

Might not have been our wisest move, but it was important for us to spend the holidays with family and to also get the chance to introduce Joey to everyone.  At 12:01am on 1/1/11 we strapped Joey into his carseat and spent New Year’s weekend in Akron Children’s hospital while he recovered from croup and receiving breathing treatments and oxygen.

We learned our lesson after New Year’s and we took winter very, very seriously.  Only the most pressing and serious doctor’s appointments were made.  Unfortunately, this still amounted to usually 3-5 appointments per week.  Constant worry about what we were exposing him to at the hospitals and doctors’ offices was balanced with making sure Joey received all the necessary courses of treatment from eye exams to echocardiograms to PT and OT.  If it was truly necessary we took him to it.  If it wasn’t necessary, he stayed home.  I wish we could have done more OT/PT these past 7 months, but I plan on making up for it after his surgery.

Flu/cold/RSV season supposedly lasts October to March in these parts.  Joey received his six Synagis treatments and still caught RSV at the very end of the season.  We were super fortunate and he seems to have finally started to fully recover (without a hospitalization--knock on wood--woo hoo!) from the RSV.

That brings us right up to April.  We kicked April off with the entire family heading to church last Sunday.   Usually we’ll get a babysitter for Joey and just take Thomas Henry, but Grammy and G-Pa were in town so we went as a family unit.  It felt so good to take Joey out and to share Mass with him during the Lenten season. 

When Joey came home with his helmet, Tommy said, "I want a helmet."  Thankfully, Grammy took him seriously and hooked him up with a sweet Thomas the Train helmet.  Thank heavens for grandparents!

Since we seem to have kicked RSV, I’ve officially declared April as Joey’s Coming Out of Hiding Month.  His open heart surgery is scheduled for Wednesday, June 8^th at the C.S. Mott Children’s Hospital at the University of Michigan.  Working backwards, that means that starting on about May 8^th, we’ll have to put Joey on lockdown.  That means super minimal doctors’ appointments.  Super minimal contact with the outside world.  Basically, anything we can do to keep him healthy the month before his surgery so that it doesn’t get delayed because of illness.  Our goal is to have the surgery on the 8th, so that he has all summer to recuperate and get super healthy before the fall and flu season start back up. 

Following his open heart surgery he’ll have to go on lockdown again.  Depending on how the surgery goes and how his recovery goes, that lockdown will last anywhere from 6-8 weeks.

My thought is this—we really need to make April count.  Family outings.  Church.  A much needed family spring break.  As much living and enjoying being out with our beautiful boy as we can cram into one month.

We kicked it off this weekend with dinner at a friend’s house so Tommy and Joey could meet their boys and we could all have dinner together.  It was such an amazing feeling to do something so normal.  I know normal will be restored again soon, but this brief break during April feels so good.  Such a blessing and so, so nice to be together as a family.

Tommy was so excited to get to go to his friend's house!!! 

Saturday I took the boys shoe shopping and then to church again.  Sunday morning was an impromptu play date.  

Hang on Joey!  April is going to be a lot of fun!!!

After never getting to take your baby out, these silly errands and family rituals mean so much more.  Such precious time.  I am fully confident that everything is going to go well during the open heart surgery in May, but you never know what curve balls life is going to throw at you or when you might get kicked off your horse, so in the meantime we are going to be doing a lot of loving up on these precious boys and a lot of living.

Watch out April…. Here we come!