Bradley’s Severe Cortical Visual Impairment Blog

Happy Dragon Boat Day…??

May 28th, 2009

It’s been a couple of days since our post and I’m sorry about that, but not much has happened around here.  We had a “normal” day of therapy on Wednesday and we had today off.  We were informed on Wednesday by the hospital staff that the hot water was going to be turned off for two days! I’m not really sure why this seems to happen so often (twice in the full week we’ve been here) but whatever.  Beike (the stem cell company) offered to put all the families up in a hotel for 1 or 2 nights because they have recognized that everyone was tired of the water situation thing.  We knew we had thursday off so  we had already planned to go and get a hotel for the night and get away.  A lot of the families here have told us that it’s the best thing they have done for themselves.  It’s VERY cheap to get a hotel and its nice to get away from the hospital. 

We ended up going to the Holiday Inn that’s just down the street.  We decided to go there because it had a swimming pool and we knew the boys would love that.  It was a beautiful hotel, five star.  We walked in the room and the first thing I did was take my shoes off and walk on the carpet, yummy.  We went to the pool and swam for a little while.  The boys LOVED that.  We had an American dinner at the restaurant there and then spent some time just hanging out in the room.  I told jason that it didn’t even feel like we were in China.  It felt a lot like a fun family vacation.  About an hour after I said that,  I was eating a yummy quesadilla and I looked at him and said, “I think I really like China, I’m getting used to it.”  He laughed at me and said, “You’re in a five star hotel… this isn’t China.” Whatever, I liked it.

We had a wonderful day this morning.  We did more swimming and ate pancakes! I think the boys loved that… they’ve missed their “pancake saturday” with dad this last week.  We made it up to them. 

Today was a holiday in China, it’s called “Dragon Boat”.  The staff made some food for all the patients/families and even gave the kids some gifts.  It was very kind! We are surrounded by wonderful people.  We got to the party late because we were at the hotel, but we did have a couple bites of the food they made.  It wasn’t bad, and I’m quite picking about trying new things. Tyler wouldn’t try anything, not even chocolate!

Tomorrow Bradley has another IV at 4:30 in the evening.  We’re hoping this one goes as slick as the last one.  Other patients here have seen little bits of improvements but nobody wants to get too excited because there’s still a long ways to go and they want to be absolutely certain that its definite improvement. 

The boys are doing well,  both have fully adjusted to this new time schedule and lifestyle.  It involves a lot of entertaining and creativity on mine and jason’s part but we’re all doing well.  We’ll update more tomorrow night after we do his 2nd IV.  Love to all,

Jason, Evonne, Tyler, and Bradley

We’ve changed the picture size on our camera but for some reason still can’t upload them here onto the blog.  Very frustrating… hang in there with us, we’ll figure it out.  The boys are still as cute as they were when we left, no worries.

Ahah… got it.  We’ll take more tomorrow and send more your way.  Told you they were cute, especially when they’re both sleeping, right?!

Entry Filed under: severe cortical visual impairment Blog,Uncategorized