Update and SCHOOL
Pauls clinic appointment a week ago went very well. His heart looks fine and so do his valves. His sats were 86/87. The cardiologist even spoke with us about the potential of having Paul's Fontan in 2015 instead of 2014… We chatted with CHOP about this too and they agreed with Dr. Parra- we can probably wait. We are glad to hear that and in light of this news, we asked about Paul going to school. Paul got approval to go to mother's day out this year… Wait? WHAT!!!
We are terrified of the germs and all that this entails but he is in a small class, it is at our church just three days a week and his teacher has a child with HLHS! Dan will be teaching down the hall, so, really, it could not be a better time and situation to send Paul into the world (gulp) for some interaction and development. I know some of you may think we are crazy and maybe we are...I know a woman who has a daughter with HLHS who is 20. She said to me "Colleen, you need to try to stop treating Paul like he has HLHS. If you keep treating him like he has HLHS- he's going to act like he has HLHS. " Powerful- Proufound-Humbling- and...True. I struggle wiht this and I have to let go a little. I have to let Paul have the life he deserves, the life he wants. For Paul and us that means going to school for now. He loves it there and our church family is all on the case to welcome him with open arms.
Paul is not talking yet; we started speech therapy last week and he is still working on getting used to the clinic and therapist. He is starting to babble a little bit but is still really behind from a talking perspective. Paul's eating is going well we are down to two small tube feeds/day plus water via tube. He is still not drinking safely but eating quite a bit the rest of the day! He seems to be growing nicely and certainly loves to walk and run.We are headed to the beach with Dan's parents next week and we can't wait!
Please pray for Paul's health as we enter into this new world of school and pray for wisdom for everyone involved in Paul’s care. He may still need the Fontan earlier so pray for us to be flexible with all of this. We are so appreciative of all of you following Paul’s journey through childhood. I pray this blog will take us to college, marriage, children and beyond.
Here we are at our school open house and ice cream social. It was pastor Ann's birthday so the ice cream came with cake- clearly Paul loved it.