Thursday, August 29, 2013

Boston News

Our second opinion is in! Boston believes they can, indeed, repair Levi's heart! I have to be honest, we were a bit stunned. We sent for a second opinion in hopes of this, but  I guess deep down we were expecting confirmation of the first diagnosis.  So now we are praying, considering, praying, researching, praying, and deciding what is best for our son.  Do you choose the more safe, stable palliative surgery that has more than likely long term complications.  Or do you go for the higher risk repair, that would have few complications long term but would require other open heart surgeries down the road to replace outgrown parts? It's hard having two doctors that you like having such different opinions.  So, on September 10,  we have a phone consult with Boston Children's to ask our many questions so we can make a knowledgable decision.  Please be praying we make the right decision for our son.

On top of that Levi finally had his upper GI to determine if his intestines are positioned correctly.   They are not. :(   In fact, many things are not positioned correctly.  His stomach is on the right side, appendix on left, and intestines on left.  All this is opposite.  Oh, and his liver is midline.  Levi is definitely uniquely made!  The good news is there is no obstructions and everything is working good.  We will be talking with a GI specialist as this may need to be corrected to prevent the intestines from twisting up.  There is a good chance if he does need surgery they will remove the appendix as a preventative measure since it is not located on the right side.  We are hoping if this all needs down they can just tie it into on of his cleft lip surgeries.  What would be best is if nothing needs done! We will know for sure after we speak with the GI specialist.   

Levi celebrated his 4th birthday on the 19th!  It was so fun to watch him.  He loved everything. The balloons. The decorations. The zoo. We wanted everything elephants!  I made him an elephant cake and we are all so proud as he was able to blow out each of his candles, thanks to his tracheal repair! So proud of him! He was proud of himself!  He loved his presents and kept making sure they were his, and not Samuel's.  Haha.  So glad we were able to celebrate this birthday with him as a family!  Levi has not gained much weight since home, maybe 1.5 pounds, but he has grown 3 inches! His color is great and he is much more active know that he is breathing better. He loves his siblings and it is so fun to watch him watch them! So fun to watch them bond and become best friends.  This time last year we were waiting for LOA and TA.  It seems like forever ago.  Levi seems like he has always been here.  Can't imagine our family without him! 

Soccer season is in full swing and Levi and Samuel are playing  for the first time.  They are so cute to watch. Levi is doing much better than I expected and is quite determine to kick that ball in the goal! 

Samuel learning to dribble!
Levi learning to dribble!
Samuel makes a goal!
Levi makes a goal!

Oh, and one more thing.  As if our house is not crazy enough, we got a puppy! His name is sneakers and he may just be the best dog ever! Levi loves him and so does everyone else!
Meg and Sneakers