Geneticist Appointment and S.O.F.T. Support Of Families With Trisomy!

Well, Yesterday I had a big day. I saw the Geneticist which was about an hour away from where I live as most of my appointments are about two hours away from where  I Live, but then again, most appointments are with very trained specialists as I require very special care.

Anyhow, the Geneticist was very amazed that the trach has helped me so much. He as well as us are thinking the trach is a permanent thing meaning I'll most likely have this the rest of my life, but you know what? That's fine, afterall I'm finally living a great quality of life and I'm not  as much of a ticking time bomb as I was before my trach. You know, I had thought that the last 28 day hospitalization  onlyhad ONE coded, but I'd actually coded twice so my Mom said, but had significant desats several times. that's usual with me. When I desat I always desat HEAVILY!!

Anyhow, I talked to the Geneticist about Aaron and about Trisomy 18 and he gave me a website I should go to to check out. Well They listened to Aaron's Minuet right there as I was in the Dr's. office and  right then he said, "You should go to the SOFT conference every year, take a piano, and play that Minuet there!!" That really touched me when he had said that. What Exactly is SOFT?

It's an  organization and it's short for "Support Of Families With Trisomy!"
This is mainly involved in Trisomy 13 and Trisomy 18! Well, I told them all about Aaron and they said that  S.O.F.T. is actually in "Salt Lake City," Utah!! WOWWWWWW!! This was very interesting!!

Anyhow, I had a great day and also He's written a script for me  for an extra pulse oximeter. It does not look like I'm going to get to choose, but if the oximeter the bring is a pulse ox that i don't like because It's hard for me to see the LEDs, I'm going to tell them. I got a feeling I'm not going to get  one like Aaron has, but hey, DMEs only have what they have and most of them are not going to special order, so I'm not expecting that to happen!! This means that if I'm at the piano or at the computer I can still be continuously monitored and so if I get so comfortable playing a Piece at the keyboard/piano like "Capriccio, BWV 992," well let's say I desat, I can simply put on the vent if I'm off the vent in the first place and usually now days I'm ON the vent.

I'm on the vent so  much you could say I'm 24/7 vent user,  and most likely soon this will become LITERALLY 24/ but hey, this trach and the vent have given me a new life and I am doing so much better with the trach and the vent now days.

Before I was literally DYING!! I mean being coded in the hospital is very unpleasant. I'd thought I'd only been coded once, but It was more like several times, althoughI think the code button was pressed two times!

Anyhow, I'm glad i was able to tell more people about Aaron and his very special story that has become very special to my heart.

Thank you for listen to another blog post.

God bless you all.

Remember, ONLY HE, can love you  PERFECTLY!!!!!!