Happy Wednesday to you! I’m reporting to you from the parking garage of Seattle Children’s Hospital – in none-other than downtown Seattle. Kinda slick that they have wifi available-bring down the work computer and blog….I’m not going to complain! I decided to take a day off to accompany my daughter down for one of their trips to the children’s hospital for one of Lily-Beans appointments. Today is physical therapy day, and unfortunately a blood draw. They usually have the blood draws closer to home, but somebody messed up some paperwork – so now they have to do the uncomfortable, often time consuming appointment down here today.
Lily-Bean has been a trooper, as has her mom and dad! Her blood draws have been coming back better and better, they’ve been able to stretch them out more and more, so hopefully we keep going in that direction. We are still playing the game of wait and see. I can see that she is not developing like other babies her age, I can see there are some definite signs of being different, but it’s not a horrible thing – she smiles, and coos, she giggles, plays with her hands and is grasping toys. She burps, coughs, poops and eats…she doing all the important things – we just don’t know how far she will progress. But does anyone really know anything for sure about anything? For now we will enjoy her little coos, and her smiles and see how long God blesses us with her presence.
I’m hoping that eventually some time this summer that I will be able to have her for a few hours while mommy & daddy go out for dinner….but we will see if mommy can give her up for a while.
We also took some time off from work yesterday to enjoy some boat time with the 5-year-old & 3-year-old grandbaby, as well as my son and his girlfriend. I cannot even begin to describe how enjoyable of a day it was.
Warm, dry weather, calm seas – exploration on the beach, up and around the high cliffs in the trees – the boys even got some fishing in. The three-year-old was so exhausted and comfortable that he fell asleep on one of his parents, and was laid in the bow of the boat and snuggled down to sleep in the bed up there for the hour ride back to the boat launch.
I managed to get some fairies put together to hide along the trails. My grand-daughter was in heaven finding them, and chatting about them with people we seen on the dock. The story has gone a bit further – not sure if it was Joe, or if it was her mom, but something about it being fairy season – they are just hatching because the weather is warming up….their wings are still small….ahh, gotta love the magic of being a kid! When she put them on the boat, she made a safe protected space for them (one of them broke her leg…they are fragile little things!) then she proceeded to take them home, make them a flower bouquet, put them in a drawer so they wouldn’t fly away — with the flower bouquet. She did notice that they did not have wings – I will have to be sure to find someway to add those on there next time.
She was looking for the colored pencils and nature book we had been filling out in my bag when she came across another fairy I had decided not to hide…that little stinker. I told her that it was the broken fairy I was going to do surgery on….she seemed to accept that answer, but come to find out later – that indeed she still had the broken fairy. That little girl is a thinker, but she seemed to let it go! Maybe she didn’t want to let grandma know she had been busted?! Caught red handed?!!
While I’ve been playing, I see that I’ve had some new blooms in the garden. I haven’t had nearly enough time to actually go out and pick, it was more of an observation – a purple aster has arrived to the party! I’m still trying to figure out what to put with the dark prince snap dragon….there are a few things here and there blooming, but nothing pulling itself together that seems like a logical color combo…but that’s usually the case – it’s not until I get a bucket of blooms that I realize that indeed I do have a good mix of things! I’m not being disappointed by my Rudbeckias – I’m surprised they are already blooming, but they are pretty. The only thing is….I have no other orange/yellow anything to put with them. Sunflowers would be nice, yellow snaps perhaps, maybe some darker shades of Zinnias…nothing like that yet! I’m considering putting the dark prince snap with them, but we shall see! I’m super busy tomorrow and Friday also, so who knows when I will have time – hence me cutting back next year!
I did find out that my daughter loves her patio planters, so those are a definite do again next year – perhaps even some hanging baskets. Buy the plugs, load the baskets, and keep them warm and cozy in the greenhouse until time to put out. I know I can have 25 on the lower shelf, and if we do hanging ones, I can have 5-6 of those off the rafters – I know that Joe built the greenhouse sturdy enough to handle that sort of thing.
Well, I best get a move on before you fall asleep in your soup! It’s only 9:30, but we’ve been out and about four hours now, I can’t imagine how they are all holding up to this. If her first shot doesn’t take – meaning if the Zelgensma wears off – their only other option is a spinal tap every three months. That’s a lot of trips down to Seattle, that’s a lot of needles….and a lot of tears….we shall see where the road takes us from here. They are making advances in medicine daily, and with the donations that we raised last month there will be more advances and more studies and more options as Lily-Bean gets older. Until next time my friends – hugs to you!