Yeah. The last week or so has been kinda strange. Trying to prepare for our departure. Our prolonged departure. I’ve been avoiding posting. The things that come to mind are filled with demons. While there is hope, I’ve been so tired, lately, that the demons are ever present.
We had counts scheduled for this morning. Gregory had a couple coughs, yesterday. Wet coughs. One in the AM and a couple, last night. No biggie, right? Well, with no immune system, it changes lightening fast. This morning he was wheezing and coughing hard, as he was waking up. I knew, at that point, that we would not be coming home. I packed up all our bags and threw them in the car. I called down to the clinic, not knowing what the protocol was for “sick” kids in the clinic. Gregory is not into wearing a face mask, so we had the comfort of a room. Then the comfort of an admit. It seems like he gets worse late at night and early in the morning. Which I know is typical. He played well all day, with occasional coughs, froggy speech and small moments of catching his breath. Amazingly enough, his counts are still decent. Last Wednesday he was at 55 and today? 33. Still not to transfuse level. (platelets, that is) His hematocrit is holding, too. 30 today! That 6-MP is really doing it’s job. I’m not sure if we will get home, tomorrow or not. He’s had a couple coughing fits, since falling asleep. We will see.
I am grateful that we are not leaving for Seattle, on Tuesday. I’m afraid that they would have delayed our arrival, due to this respiratory thing. An extra week is more than welcome, for now. Oh yeah, Gregory is also getting nebulizer treatments, every six hours. His next one is due and 12:00 and while I know it would be a benefit for him, I’m kinda hoping that they don’t have to wake him up for one.
Regarding the photo shoot. The pictures are so awesome. I’ve never had pictures like this before. They are the first professional pictures that actually capture the OffSpring as they are in daily life. Not stiff and posed. Perfection. Thank you, Lana. Moments captured, forever.
Here’s the full set, if you are interested. It’s huge! I haven’t captioned or credited them, yet.
Thank you’s for today:
To everyone who donated blood, is thinking about donating blood, joined the Bone Marrow Registry, is thinking about joining the Bone Marrow Registry: You are heroes. You are saving lives. You are bringing hope to families. Just like us.
Marlene!!!!! This thank you is delayed. I NEED the recipe for that soup. It was the best “Mexican” soup I have had. (Well, except for Azteca’s Seafood Stew. Wait, that’s a stew. Never mind.) Not that I will be fixing it anytime soon, but it was so yummy. I would like to have it for future use. Great recipe.
To all of you who keep commenting and offering encouragement and support. This is a group effort. All of your positive energy and thoughts are pulling us through. Will pull us through. The tough stuff is still ahead. Please don’t quit. Even if it’s a thought in passing. It counts. So do you. ♥
Thank you, in general to ALL musicians & writers. I cannot imagine my life without music & books. My life moments are marked by lyrics, melodies and passages. These things are priceless to me.
*If you don’t know about Pandora you really should check it out. It is simply divine. Also? iphones & BlackBerry’s have apps. Love it!*