One year ago today, Levi became our son! I can not believe a year has passed. The time has flown. It seems as if he has always been here. He has blossomed so much. He laughs, plays, teases, hugs, gets mad, and just acts so much freer now. He comes to us for help, for comfort, to cuddle. It's not that he didn't do these things before its just the way he does it. He is comfortable. He is at peace. He knows we are his family and he is happy. He has settled in! He is so much more energetic too! Now that he is breathing better and his oxygen is up this little guy is pink and on the go! He does wear out faster than his brothers and sisters, but he generally doesn't let it stop him!
It has been amazing to watch the bond form between he and Samuel. They are finally to the point of enjoying one another as playmates. Oh the giggling they do and the trouble they find! It is so fun to hear one of them say to the other, "you are my best friend!" or "I love you." Of course I hear plenty of, "you are NOT my best friend anymore! Samuel has even announced once or twice, "Take Levi back to China!" But this does not last long. Within seconds they are playing and saying they are the best of friends. I love to see Samuel running off and realizing Levi is lagging behind. He always stops, comes back, puts his arm around Levi and says, "Come on, Levi." He is becoming quite the protector. Levi finds Samuel hilarious and looks up to his brother. He copies everything Samuel does....not always a wise choice! ;)
I can not even imagine our family without Levi. He is pure joy. He is so incredibly brave. He never gives up and is so full of life. We were not sure what to expect with his complex heart defect. Still don't really. But I am so glad our fears did not stop us from adopting our son. God has blessed us greatly!
On September 10th, we spoke with Dr. del Nido from Boston Children's. He was wonderful. Very informative and patient with our many questions. He stated the records he received from Nationwide Children's were very good and thorough, but he still feels they can repair is heart. He emphasized that their speciality is kids with hetertaxia (irregular placement of organs), and while Levi is a little more complex having transposition of the great arteries, heterotaxia, Complete Atrioventricular Canal defect, DORV, and pulmonary stenosis, he has repaired this before. So, he wants us to come to Boston so he can perform his own study to determine if we can indeed move forward with a full repair. We are beyond excited but trying to keep in check as this is what Nationwide felt too until they were actually inside Levi's chest. But we are filled with hope and if he gets in there and says it can't be done then at least we will know we looked at all the possibilities! He did say this was a higher risk surgery short term compared to the Fontan. However, for Levi, the long term is more stable.
Due to Levi's upcoming cleft surgery we have put off Boston until late spring/early summer. His oxygen saturations are holding good right now and he is thriving, so they felt it best to stay on schedule with the cleft repair.
We are still waiting to hear what they want to do with his intestinal malrotation. We are praying they will just leave it alone since he has no symptoms and it seems to be working well for him!
He also had his liver/spleen scan done. As expected there is no spleen. There is not even any splenic tissue. His liver looks good, although is is a little more centered than normal, but that is no biggie.
It has been a wonderful first year with Levi and we are so thankful that he is our son!