Malakai was born Sep 24, 2008. At four weeks old, multiple tests determined he had a rare liver disease called Biliary Atresia. BA is when the bile duct between the liver and the small intestine is blocked or absent. He had his first surgery Nov 6 to temporarily fix the problem. During a five week hospital stay for ascites, Malakai was put on the transplant list on Mar 20. He recieved his "Gift of Life" May 12, 2009 at Children's Hospital in St. Louis.
My handsome little man fishing with DaddyEaster egg hunt Makena and Malakai with the Easter Bunny
This is what he does when you ask him to do his "Home Alone" face :)
Kids at the Butterfly Gardens
After being released from the hospital, Malakai has done very well. He was diagnosed with RSV the day before we were discharged so we had to postpone his venogram he was supposed to have on that Friday. We were told to get labs the following Monday and then again two weeks later. His labs have not only stablizied, they've improved! The venogram is not even necessary at this point! Praise God!! His hemoglobin was 10 at his last draw. The lowest it got was 5.2 and it should be 12. So we ARE getting there! His belly is flatter than it's been in months and he's even walking!! I am beyond proud of him. He started standing on his own, getting up by himself and as of the beginning of this week, he started actually walking. 10 - 12 steps at a time!
We are finally getting settled into our new home. Makena loves having the space to run, although her being so far away from us at night has proved to be a little scary for her. She ends up in our bed about 50% of the time...which usually means she sleeps later. Malakai likes the new place because of the cows. We can hear him through the baby monitor in the morning saying "cow, cow" He thinks he can see them through his window. We do have about 50 cows that live surronding our new place. We walk almost daily to go out to see them.
His vocabulary is constanty growing. He says Nana and Papa, Mama and Dada. Jack, Emma, he calls Makena"dit" or trying to say Sis. He says ball, cow, drink, bye, hi, baby, yellow, blue...I'm sure there are more that I'm forgetting. It's so amazing watching him grow into a toddler. He looks up to Makena and wants to do the things she doing.
We are doing the Liver Life Walk on May 22. It's downton Indianapolis, if anyone is interested in walking with us, please email me and let me know. Carah117@yahoo.com. I'm thinking about ordering some t-shirts for everyone walking with us.