The running posts yesterday tell the story very well. It was a full day with much to celebrate. We’re so grateful for all of you in SB who celebrated with us and for those who sent us pictures from around the globe. How fun! Please forgive us as we’ll be tied up through Saturday, but will look forward to posting all the pics and sending on the favors. There’s still time to send yours!
It’s overwhelming to consider all that we’ve been through in a year. Just this morning, I spent some time reflecting on the journey and how it all started. They told us it would be tough, but we never thought we’d have to fight so long and hard. I don’t think I’ll ever be able to recognize Rudy’s condition as a “good thing”, but there is still a place to be grateful for what this has brought about our family.
The next leg of the journey feels like it might be on us before we know it. We’ve had some communication with UCLA and next week come the appointments which we were able to put off until after this milestone. But details on that when the time comes…for now I think we’ll extend the celebrations into the weekend.
Thanks for rejoicing with us!
My name is Erin Wilson. I stumbled on your blog today after googling, chd and tracheostomy. I’m so glad I found your blog. We have a little boy, Josiah, who has HLHS and an intact atrial septum. After his 4th failed attempt at extubation yesterday the MD’s put the idea of a tracheostomy on the table. He is 4 months and at this point not a candidate for the Glenn because of his lung condition. I am looking for some info/ support because it’s been difficult to find people in a similar situation. I don’t really know what to ask at this point!