January 14, 2013

January 14, 2013

So this will be short and sweet because I will spare telling why I have had a crappy go of things lately and keep it about Clayton. My friend Elissa said a good rule of thumb is to not get so far behind you feel like quitting rather than catching up. Lately I stay behind on my posts don't I? I guess I need to follow that rule better with posting.
Anyhow, Clayton has been doing great. George and are still a wreck over this respiratory stuff, but we see a pulmonologist this week in NYC so hopefully that might help. We have just been amazed (and grateful) at how happy and healthy Clayton seems to be even in the midst of the respiratory issues. That's the thing about this respiratory stuff, is that it seems they are just episodes, but we never know when he might have one of these episodes. That's a big part of what's so scary.
We flew to NYC today for scans this week. We have not been to NYC in three full months, nor have we had scans in three full months...that's crazy given how our summer was. We are here now and I'm excited to be back for a short visit. Our flights weren't too bad. Clayton was amusing during our layover; my travel buddy (aka my mom) was going to try one of his Teddy Grahams and he snatched that bad boy back from her and put it back in his snack pack! Those are his Teddy Grahams. Just funny to see that little personality come out like that. He was so full of it in the room tonight too. Happy, happy, happy; so nice to see him that way. I on the other am finishing this post at 6 am Tuesday morning having not slept much due to paranoia that the weather change or something might trigger a respiratory episode. I'm a bit of a mess about it. Hopefully that will get a little better soon. One reason is we give him steroids with his MIBG so that will help my nerves a bit because those steroids will help protect against a respiratory episode as well. Also because Tuesday we see the pulmonologist. Praying that will bring some relief to this constant fear.
So Tuesday we hit the day clinic to access his port and draw labs for HAMS first thing, then 10 am is the pulmonologist, which will be a few hours and I have to check the schedule again, but maybe we give the first dose of his steroid too. I should sleep better when we do. From there we spend the week doing scans...

No comments:

Post a Comment