A Bitter-Sweet End to 2013

“I think we made the right decision.  But I do feel disappointed.”  This was (more or less) exactly what I said to Kim today on our car ride home from Children’s Hospital of Philadelphia. 

Our little Leo had a scheduled appointment there today with C.H.O.P.’s cardiology department. 

A little background: Wolf-Hirschhorn children are prone to many and wildly varying medical challenges.  One such challenge is something called an Atrial Septal Defect (A.S.D.), or, put more simply, a hole in the heart.

We knew Leo had this condition but we have not been rushing to take any corrective action.  Leo’s A.S.D. does not pose an immediate threat to his health, and up until now Leo has been too small for elective (or semi-elective) surgery.

The bottom line here is that Leo has a hole in his heart, and it needs to be repaired.  He’s not in any immediate danger, but if his A.S.D. goes untreated, the consequences for him could be dire at some point 10 to 20 years in the future. 

Today’s cardiology appointment was to determine what our options were.  We had been holding out hope that Leo would be eligible to receive a catheter-based procedure that would be a lot (and I do mean a whole lot) less invasive than open-heart surgery. 

But Kim and I were both disappointed to learn that the hole in Leo’s heart is just too big for this approach.  We spoke with a very-approachable, down-to-earth, cardiologist who just happens to have made the catheter-based procedure his life’s work.  When he said “If it were my child, I would not do this” we knew our decision was made.

Leo will have open-heart surgery sometime in the early spring of 2014 (like, april-ish). 

So, tonight, Kim and I are a little disappointed because we won’t get the easy option that we had hoped and prayed for.  But, we are a whole lot grateful.  We are grateful for a God we can trust, even when He doesn't give us exactly what we want.  We are grateful that our Leo is healthy enough for us to even have this conversation.  We are grateful for the family and friends that will join us in praying for our little man in the days ahead.  We are grateful to live within driving distance of the world-renowned C.H.O.P., and the great, personable, doctors we have connected with there.

Today’s visit to C.H.O.P. was a kind of sobering end to 2013 for us.  But it was also a reminder to be grateful for all that we have, and to not take for granted the children that God has blessed us with!

Can He Hear?

The initial information we received before even meeting Leo was that he was deaf.  We quickly realized when we met him that he could hear.  But there was always a question as to the quality of what he is hearing.  Leo has had numerous- at least 5 hearing tests and an ABR- in his short 3.5 years of life.  He is on his third set of ear tubes.  Today, for the first time, Leo finally passed his hearing test.  He will continue to be followed by ENT every six months or sooner and will have another hearing test then.  As he grows, they can perform different, more accurate tests that will allow us to really know if his hearing is 100%.  For now we assume that like his brothers he is developing selective hearing when he ignores me when I ask him to clean up his toys :)

December will be a busy month for Leo as he sees the plastic surgeon for his cleft palate and also the kidney doctor.  Probably the appointment we are most anxious to have is with the cardio team at CHOP December 30th to hopefully decide if the hole in his heart has closed, if it can be cathed or if he will need open heart surgery.  Please continue to pray with us that the hole closes, which would be a miracle!

If a day filled with appointments wasn't enough... formula leaked all over Leo and the car seat when the attachment came undone somehow.  Not sure how much of that feed he actually got and then for some strange reason at a later feed his pumps battery died so we had a difficult time finishing that feed as we were in the middle of a store when it happened. You would think these would be all good reasons to eat but Leo disagrees. The adventures of a feeding tube continue.

4 Years Home

Four years ago this weekend, Jeremy and I met Jonathan for the very first time. As I was tucking him in bed last night, he asked me about the first time we met him. Lately, Jonathan has been asking questions. Questions like was I in your tummy? Was Ben in your tummy? How did you know I was in China? We do our best to answer all of his questions in a honest way and at the same time stress to him that he is loved and he is our son.

Meeting for the first time.

Jonathan is now 7. He is beginning to figure out his identity and what it really means to be adopted. We cycle. Jonathan asks one or two questions, we answer. Jonathan then becomes silly. Silliness is his protection.  I think he is protecting himself from the fact that he did enter our family differently then "most" of his siblings.  Jonathan witnessed Leo's adoption and he knows in his mind that Leo has another mommy, but I don't think that information has reached his heart yet.  Why?  Because if he acknowledges that Leo has another mommy than he will have to come to terms with the fact that he has another mom.  He is not ready to go there yet.  I wish his China mom could see him now.  See how well he is doing.  See what an incredible boy he is.

Brothers (first weeks home) I have also been reflecting on how far Ben and Jonathan have come in their relationship in four years. When Jonathan came home, something happened that we knew would, but not to the extent that it did. Jonathan and Ben are just 13 months apart in age. Ben is older. We knew we would have to deal with some jealousy. We knew that Ben and/or Jonathan might have trouble adjusting and sharing but what we didn't realize was how much Jonathan's arrival would impact Ben. Ben's world was turned upside down and shaken to the core. He regressed horribly. Jonathan did great. It was like he had always been here. He fit right in. Ben wanted to send him back. It took a little longer then a year for things to even out and for Ben and Jonathan to really become brothers.

 They have come so far in the last four years.

Today, the two of them still fight. Ben still need what he calls "loney" time (which is his way of saying "I need my space"). But I really do believe they love each other like brothers. They are family. Some days you might even say they are friends. They either are playing great together and getting along great or they are battling. There doesn't seem to be any middle ground. Ben definitely needs his space and time alone and if he has that he is good.

Jonathan has thrived and grown so much in the last four years.  He is a chess champion.  He is reading. He is excellent at math.  He is a social butterfly and makes friends with everyone.  According to him, he has the biggest muscles in the family.  He knows who God is.  He is now part of AWANA and has been actively memorizing a ton of scriptures.  We are waiting for the day that his relationship with God becomes personal.  We are so blessed to have Jonathan as part of our family.  It hasn't all been easy, but nothing worth having is. Probably the biggest compliment to Jonathan is when Amanda says- "Yes, we can adopt again but it needs to be another Chinese boy just like Jonathan."

We love you, Jonathan, and are proud to call you our son.