I know it’s been some time since we’ve posted an update, but I guess in some way that’s a good thing. Overall, Savannah and family are doing okay. Savannah is battling thrush, a fungal infection in the mouth. This is fairly common in babies, but it makes for a difficult time when eating. The good news is that Savannah is over 10 pounds and growing. Her oxygen saturations are still good, and her heart is still strong.
Coming up next week, we have another echo to check on her heart – growth, rhythm, function, etc. Then in a few weeks, we will head to Cincinnati for another round of testing and follow ups with her team there.
Then later this summer, we will be traveling to Boston. Boston Children’s Hospital is where Savannah will have her heart repaired. This journey is far from over.
The physical, emotional, and even financial tolls of having a healthy child are overwhelming. But when you multiply it by several orders of magnitude with a baby like Savannah, we spend much of our time feeling exhausted, helpless, and alone. We appreciate all your prayers and support. Please keep them coming, especially for Lori. I thankfully have the distraction of work. I get to leave the house and spend time away from the daily grind at home. Lori doesn’t get to do that.
Savannah has come so far, but has so very far to go. There are no set medical guidelines or plans for how to treat and manage Heteortaxy Syndrome. It’s all a case by case basis, leaving each family to ultimately decide on their child’s course of treatment. This is probably the hardest part of it all. The decisions that Lori and I make now will ultimately impact Savannah’s survival. I don’t think you can ever carry any greater burden than that.