We have done another week of medical junk and things are going well. Today (as you can see from the picture) Aimée had her Plasmapheresis (actually dialysis) line removed and had a Port installed. Since she has been switched to the Soliris treatments she doesn't need the dual line to take and return her blood so we went to something that allowed her more freedom and less funny looks when out in public.
With this new port (it's the one they use for Cancer patients) it allows quick access and she doesn't get any more sticks in the arms for either blood draws or the Soliris treatments. It will make Aimée's life better/easier and that is priority one. I "borrowed" this picture from a blog and is a picture that matches the literature we got. It is a line that connects to major veins but puts a point of access just under the top of the skin so she doesn't have to have those huge needles jammed into her arm all the time.
Other than that life is going along pretty well. Both kids had back to school nights last week and that went okay. A few minor hicups due to all this extra stress but nothing that any of the teachers thought was a big deal. All of the teachers were impressed with how well they are handling all of it and still keeping focused at school. I couldn't be happier with my kids, they are amazing little buggers! We had a nice talk about all of it and things seem to be improving already.
This Thursday BOTH kids have concerts at 7pm. Husker Grandpa and Grandma are both in town for it so we are figuring that Husker Grandpa and I will go see Drew play Husker Grandpa's 50 year old Trombone at the Middle School. Aimée and Husker Grandma will get to watch Natalie in a play and signing 10 songs at the elementary school. Both kids having a good time and family to enjoy it, again, all things considered life is pretty good.
Today I was notified about my new assignment to STRATCOM here at Offutt for the next few years (RNLTD 30 Nov 11). This means we are going to get to stay here where Aimée has the best medical care we can get right now, the kids have great schools, we have a great house and we are very comfortable with family support and knowing the area. Can't really ask for too much more right now. For those keeping count that is actually the 5th assignment I have had this year (I beat Broomy and that is saying something!). I will report next month when my current set of leave ends. Then we will figure out if I need to take more leave or can go back to work. That is a call that Aimée and I will make based on PT/OT and the doctors suggestions to us. I have enough leave stored so it's not a big worry for us either way.
Between the Air Force and Tri-Care (our insurance) we could not ask for better support financially! The amount of effort and support we have received from the Air Force in the last year (two commanders, CHIEF you rock man, two Shirts, and all the amazing support from the guys) is AMAZING. Hell over the last 4 years we have had amazing support and I can't say thanks enough to all of those who helped us out. I could not imagine any job being as supportive as the Air Force has been. On top of that we haven't had to pay a penny in medical (except a few bucks per pill bottle) and that is better than 99% of the rest of the country. I was told by our case manager that if we had Blue Cross or something else we would have already hit our lifetime cap and Aimée would be uninsurable so I'm pretty damn happy with Tri-Care! Life is good.
We still get to see PT/OT, Hematology and have a Soliris treatment this week. Here's to hoping it all goes smoothly!