We're back from our trip to Seattle and Olympia. We had an appointment for Rainee at pulmonology, and then the kids baton. We had a fun trip there, more relaxing then we suspected. And had a AWESOME motel only four blocks from the space needle.
That was the view from our room. After a bit of a down time we walked over to the space needle, and looked around.
Though you can't tell it in this picture the space needle is just behind them. The kids were properly impressed with the height of it, and if we were rich we would have gone up. We weren't LOL, so instead we just looked.
Sitting/Standing at the base of it.
Looking up the base of it.
We also wondered over to the very cool water fountain.
The kids had a blast at it. We stayed there for almost an hour. It performs to music, and was quite entertaining. You can also get very close to it, and play russian rullette over getting wet.
I kinda like this picture blurry it shows the kids in action. They got a bit close. LOL
Samuel also loved the water fall, probably the most. And its not actually a blurry picture, he's IN the water. LOL
After the nice adventure we headed back to the motel and settled in for the night.
I however spent the night VERY sick. *ugh* My flu bug came back that I'd had a day and a half earlier, and I ran to the toilet every 15 minutes all night long. In the morning I got some keopectate, and was fine. We actually do not think it was a flu bug, as NOBODY has gotten it. I think its an allergy to corn oil. But not sure and certain yet.
The next morning after everyone praying over mommy, we headed very early to Childrens Hospital for Rainee's pulmo visit. It was a hard visit. Rainee's asthma hasn't been great for awhile. The test in early September rather woke us up. We had thought it was her reflux acting up, but I'd missed valuable cues, and for the last year and a half its NOT been her tummy but her lungs.
While I filled the nurse practitioner in on what had been going on since September, they did her lung study test.
It what NOT a good test. IT more then confirmed what I told the doctor. The irony is in Rainee's mind she was having a VERY good day. She did NOT have asthma. Her small airways are functioning at 40%. Her large airways under 60%.
The doctors kept saying. "When Rainee has a good day, you can do this and that." And I'd say. This is a good day. And they'd say, well when she's better. And I'd say she *is* better. They never did actually hear that part. So when my child is the "healthiest" they believe she is in severe distress. Great no?
The intresting news is Rainee finally responds to albuterol. She absolutely did NOT when she was a baby. So their switching her med to advair which has longacting albuterol and flovent (she's currently on flovent). There hoping this will maintain her better.
We will take the long expensive trip back in 3 months and see if that helps. There's also talk about revisiting a bronchostopy, and a sleep study. But those will be discussed with our regular doctor who we were unable to see on such short notice. We will find out in about a week if that is necessary.
Rainee was a major trooper at the visit. And they were able to see how clearly she does NOT communicate about her asthma. But also how talented she is.
She drew that on the white board while we were waiting for prescriptions, and results. theres a dragon, and a lion in a cage, and a knight with a bow, and a knight on a horse. Well study it, she's got lots of stuff in it. ROFL. Not bad for a white board and a very dead blue pen. (no tip left lol)
The rest of the adventure was mundane. Olympia, our normal motel which we love. And Rob and I reeling from the news, and quite frankly too numb to worry. About half way through baton the next day we finally started grasping the realities, and making game plans. Not that there's a lot of game plan.
Also Rainee in talking with the doctors made her own wee break through and began informing us more often that she "can't breathe." This is a VERY good thing.
The very sad thing is how very often she said it. And we just can't give her meds that often.
Her baton coach is very aware of how bad she is, and was extra solitictous about giving her the time she needs when she got tired. So we'll continue on with that. All prayers are appreciated.
We will now travel with a epi pen. And have a prescription of liquid steroids at home. These are last resorts. I don't know. I'm too numb to really think through it all. Living in denial will do that.