Things are the pits right now- Curtis has been in hospital for 16 days, discharged on Thursday.26th. The unfortunate part is that he is now on the Palliative Care program at home. I have always cherished every moment with him but, the moments now are even more special. Unsure how things will progress or stabilize- He has a collapsed right lung and fluid in the space around that collapsed lung. He is having challenges with swelling in his legs and feet. Swallowing is also a worry as aspiration has raised it's ugly head. I am leaving it up to Curtis how much he wants me there. He is pretty saturated after all those days of ++ care in hospital. He needs some time to relax and settle a bit.
We ahd planned a trip to Victoria to visit some buddies of his who also have DMD but, had to cancel as my Mom died of Cancer in October. We are hoping to be able to get to Victoria. His sister Jenn and I will be taking him as soon as he feels he can travel. Who knoes but it is a goal for now.
I will be going back and forth- probably for the day most times I will try to call you if time and stamina permits.
I just joined this site in Oct., have not had much time to come here, have been going to vancouver a lot, Joey started the PTC124 study just two weeks ago. I was wondering if you guys would like to do the wild lights again this year with Joey and I. If so just let me know what would work for you we are fairly open except for the week of Dec 8. Hope to hear from you soon. Hope all is well with all of you guys!