Tuesday morning we found out a room was available for us at the Ronald McDonald House, so we quickly packed our car (yes – we are the proud owners of a new-used wagon) and made the trip down to Toronto.
This morning, we walked over to Sick Kids around 7:45am for Leo’s sedated echo. Leo chugged down a nasty sedative, called chloral hydrate, and took his sweet time falling asleep (50 minutes to be exact, little stinker!). It was a long echo, around 90 minutes, and Leo slept for the most of it.
We then went and had an ECG done, which Leo held so still for! He is such a little pro!
Mark met with our social worker, who was doing a research study that he was a part of, and after she “interviewed” him we had our appointment with Leo’s cardiologist.
Dr. Jaeggi was so impressed at Leo’s current heart function. He was also amazed at how quickly he was out of the hospital after his heart surgery. Leo has been prayed for by so many people across the globe, that I truly believe God answered our prayers in this regard.
We were expecting to make monthly or bi-monthly trips to Sick Kids for Leo’s check-ups, so you can imagine our jaws dropping when Dr. Jaeggi told us he didn’t want to see Leo UNTIL NOVEMBER OF 2014! Can you believe it? We can hardly! Dr. Jaeggi was even okay with us possibly transferring care to Texas Children’s in Houston, TX later in that year. I asked him if we should still be actively looking for signs of heart failure, but he said that would’ve been more of an issue before surgery, and that he doubts anything like that will happen any time soon, if ever.
Leo has a pacemaker clinic at Sick Kids on May 20, 2014. And Lauren’s permanent residency application should be approved by December of 2014. So we could be moved to Texas by the end of next year! What a praise!
So here we are. So blessed. The perfect Christmas gift was to hear that Leo’s heart was functioning beyond expectations. No signs of heart failure. No more chylothorax. Only two more trips to Sick Kids in the year 2014.
We are so thankful that God has answered our prayers for Leo, knowing fully that there are so many children and families whose prayers God is answering in a different way. Our next door neighbor at RMH is a 15 month old girl with beautiful brown eyes and is undergoing chemo for leukemia (and will be for years!). Sophie, Leo’s friend at Sick Kids, has a Berlin heart and is still waiting for a heart transplant. We know of another girl at Sick Kids who was told she no longer qualifies for a heart transplant as her condition has so deteriorated. Please be remembering these girls in your prayers!
Leo and Sophie, both looking a little hungry.
How can you be praying for Leo now?
1. Leo’s weight has gone down to around 18 lbs 15 oz (from around 19lbs 4oz last month). I guess a fat-free diet would do that to a baby!
2. Leo is struggling with his fluid intake. His desire to drink just isn’t there, but we finally found a sippy cup he will drink a little bit from with some coercion.
Since Thursday, when we took out Leo’s NG tube, Leo has sat up from laying down, crawled, tried pulling himself up on tables, is pointing with his little finger, and is eating fatty foods like chicken and ice cream and is LOVING it!
So yeah, that’s how Leo is currently doing. Thank you so much for praying for him! Thank you for the encouraging emails and letters, the sweet and thoughtful gifts, and being such a wonderful support group!