Today, Todd was tired from all the energy he had used up from the day before. He was quiet with a few naps here and there, he had a few visitors and two therapists also stopped by. His physical therapist and (the new ultra cool moment of the introduction of …) the speech pathologist. I had an idea about the implications of this one because Erin has been talking about herself for years….kidding, but we do have a friend in this field. The swallowing is an important next step on Todd’s path. So, the super tired Todd who fell asleep during the visits was still managing to perform. He demonstrated his ability to swallow with the trach tube by taking in two spoons of applesauce (the sip of water was less successful) and then promptly fell asleep! It is still undecided whether the trach will be removed (he is ready) before or after the flight home due to the possibilities of complications during flight…..Big Question no answer. Then the physical therapist was almost halfway through moving his limbs before Todd woke up….that is one sleepy guy! We had another spoonful at his next feeding……….he made have had more in the evening after I went home but the nurse was not going to push him. Repatriation is in the works, the conversations are happening, all family and doctors are working together…….that said we still don’t know where or when, we are definitely talking a few weeks.
Big, exciting conversation with John Rogers that I want to share with you all! The understanding of all that lies ahead is becoming clear: the relearning, the therapy, and keeping Todd spirits up are real and important pieces of the puzzle. John and I have talked about using art and the Oakland Public Art commission they share as part of his weekly therapy (our version). We plan to start building on his passion and excitement for these things; John will be with Todd as soon as we can put it together. They will pour over ideas, discuss meetings that have transpired, and work together in a collaboration, which will include Todd’s development as part of the interaction. We will have Todd sketching and nodding before you know it, and we have stuff to work from using sketches that he has done. We will start small with a project that will go up at Joshua Tree for everyone to see, this will allow Todd to see things flow from concept to implementation…..the Oakland project will take so long that we want him to experience the reward of completion (as in this year).
Some of you know, and some of you can imagine….. Todd and I were both in the middle of taking some risks and putting ourselves out there creatively, true to some major dreams we have been cultivating for ourselves, both individually and as a team. I plan to build on all the passion and desire and keep our eye on the ring (which is what he is doing on that merry-go-round photo, literally)!!!!!
Babalou arrived Wed…and has slipped seamlessly into our lives completely knowing what needs to be done and providing the best of mothering (who knew how much mothering I/we needed?!). Not quietly of course, she is talking to Todd and calling me Alexfish. I am sure Todd is saying who the hell is Alexfish!? (His multitude of names he has for me does not include this one, thanks Baba!) She is working on me, settling in, and damn did she cook a nice and healthy dinner last night! I was actually crying, smiling, and laughing last night…. and she was good about moving through it. Wed afternoon was the first time she had seen Todd, including the initial accident. She was busy doing JakeEddie and outside world support at the time of my arrival…. I think she is happy to see Todd. Levon arrives on Friday, so Todd and I are in really good hands and will continue to be!
and More from Babalou…..
Greetings All…yep baba here back in Amsterdam. I took a much needed recuperation break in Munich and thanks to my friends there who took care of me. Now it baba’s time to return that energy to Alex and Todd. Seeing Todd for the first time was hard but needed. Our amazing Todd is not quite himself, as we all know him. He is coming to the surface though and is definitely in there. Yes everything has water analogies to me hence the “Alex fish” that is hanging around Todd. I think he gets it. Todd is a swimmer and I am reminding him to take long deep breaths and to stay calm and bring himself to the surface.
Todd does react to various statements and I am sure he would love to get that tube out of his throat. The trach, of course, keeps one from being able to talk. He is moving his lips as if he wants to say something. Wondering what is on his mind. All in good time.
It will be great for Todd and Alex to be home. Once home the truly hard work begins. As we all know, Todd is a teacher and and a learner. This is one aspect of Todd that I believe will not change. Eric Hobijn (he was at the hospital last night) told stories how Todd became a master at technical issues, and how he initially he was not slowed by the fact he was not. This strength of Todd is what we will work with and I am sure he will be just as inspired to learn all he knew and much more. Soon it will be our time to give back to Todd what he has taught each and every one of us.
With that I leave you and will send more info later.
Love Todd +Alex and Babalou