Happy stormy Sunday afternoon. It was so stormy Joe even started a fire to warm up the house! I was making an egg & potato casserole while he was starting the fire, the wood was crackling, and for a few seconds there I felt like it was Christmas brunch I was getting ready for! Indeed it wasn’t Christmas, we had a lovely brunch this morning with the family to celebrate Easter. It was so great to hear the house full of laughter and visiting.
I made over night Belgian waffles, that we all love and look forward to! We also cooked up a ham, and made the egg, potato, sausage casserole. We even had Mimosas, apparently I need to refine my recipe or get fancier, but I’m not much a a drinker.
It was so great to see the kids, even my sisters came over – which I haven’t seen one in over a year, she lives less than five minutes away, but has been dealing with some stuff so we don’t see her often-the other one lives 45 minutes away and works a ton. With the COVID situation things have been rather tricky also. It was great to celebrate my son getting a new-to-him truck, my niece getting a new-to-her car, hugs all the way around….it was really nice.
My daughter came over a bit early with the baby, just four weeks old tomorrow. She came over a bit early because she didn’t want to expose the baby to any possible germs. She is having a very important procedure on Tuesday, and she didn’t want to jeopardize any chance of it happening. She will be going to Seattle Children’s Hospital for a Zolgensma infusion.
We’ve been rather hush-hush over the situation, but she has talked to enough people now I can post about it.
Lily-bean, (as my daughter calls her) was diagnosed with SMA – Spinal Muscular Atrophy when she was just 11 days old. It was quite the scary diagnoses. I’d much rather not know so much about SMA, but here we are. The journey of getting the call that she might be positive for it at 8 days old, mourning the possible loss of her life, or at least the life we thought she would have, then getting the confirmation, then finding out there’s treatment, it’s been such a roller coaster! At 11 days old they confirmed the diagnoses, she’s spent lots of time getting poked, lots of conversations with specialist, and lots of reading.
I was able to find a support group rather quickly on Facebook that her and I both joined – that has been great for her. There’s also a wonderful organization that has helped her tremendously – Cure SMA foundation. They overnighted a packet of papers two inches thick to the parents (mine will be arriving soon as the grandmother/possible caretaker some day). They also sent Lily-bean a box full of developmental toys and a hand made quilt made by a grandmother in honor of her grand-daughter. Also a little onesie that says SMA Strong.
It’s been such a whirlwind. My daughter has been so strong, it’s so scary not knowing how this is all going to turn out. How frightening as a new mom, at just two days old she beamed at me and said “my daughter is perfect” then at 8 days old said she didn’t want to have to bury her daughter. We have hope, lots of hope – the insurance approved the 2.1 million dollar shot that will help her body make the protein it needs to make it so she can walk and be active like her peers. The medicine took three days to get here, weighs 40 pounds and is super expensive. The procedure is on Tuesday, then we wait and watch. Lots of doctors appointments to monitor her progress. The makers of the medication even reached out to the family and sent them information on case studies and what-not, gave them their number if they had any questions and not to hesitate to call if they had any questions or concerns.
The very interesting part in all of this…..Washington state just approved the screening for this genetic monster this last year. Had little Miss Lily-bean been born in early 2020, they wouldn’t have caught it this early. Only 33 states test for this type of genetic disorder. The only way for a child to have it is that if both parents are carriers – there’s a whole new discussion on if the kids will have any more children. My daughter shut it down the day she discovered the diagnosis, but the doctors she is talking to have been chatting with her about other options and the fact that indeed just because one has it doesn’t mean the others will. There are four levels of SMA – the most sever one is level 1, which is the type that Lily has.
Her friends have been super supportive – including offering to make a cool wheel chair if she needs one and beating the doctor up if the treatment doesn’t work. Hopefully neither will be necessary, but if they are, I’m sure all the boys can come up with a great design of a wheelchair and the doctor will be able to fend them off.
Both my daughter and her boyfriend have been amazingly strong throughout all of this. He has become an expert on the topic and willing to chat with anyone about their concerns and confusion. This certainly has tipped our world in a different direction, but we’ve been holing it together. We’ve been praying for the strength and wisdom to be able to handle all that is happening with the little bean.
On a different note – I’ve managed to sell a great deal of my delivery from Wednesday – I only have 5% that is unsold that I will have to deal with, either try to sell or give away. I did pull myself together enough to pot up most of the order. The prefilled 2 inch and 4 inch pots worked out so well! I’ve also managed to make back 60% of my cash investment for all the flowers and the fairy garden components and I haven’t even had my succulent event yet, so I know I will be able to get the other 40% with no problem after that. Breaking even isn’t horrible, breaking even – making friends and having fun is actually coming out ahead in more of an important aspect than the cash part!
Over 23 people stopped in, all excited and chatty, and thanking me, and being so polite – asking if I will be doing it next year. My friend – fellow flower farmer – Tonya came over and hung out with me for a bit.
There’s lots more to do, I need to pot up my stuff that I planted in February. It’s not horrible being inside today, I spent 7 hours yesterday dealing with orders and potting up stuff – entirely on my feet. Then getting the house ready and cooking for 14 people today has certainly worn me out. Tomorrow is a new day, the weather will be nicer and I will be off work at a decent time to come home and take care of things.
I added 9 trays to the greenhouse yesterday, there’s 4 trays of my own seedlings that need a bump. Each of those have 72 (288 or so seedlings) in them that need to be potted up into 2 inch pots, making those 4 trays into 9 trays.
In addition to the trays, I’ve ended up with patio combos that I’m not equipped to handle…I’m not entirely sure what I’m going to do. 35 of them total – 175 little seedlings to do something with. I did find pots at the dollar store that I think I can use for the combos, perhaps I can pot them up and sell them for 10$ to at least make some of the investment back. I do not have room to hold them over and make them pretty enough to sell at the 25$-45$ mark that most people sell combos at. I could pot up the components into 2 inch pots and just hold them over, but petunias are not high dollar sellers, and I’m not sure if I have space. Maybe I will do a bit of both and see how it goes?!
There is a sale happening with the flower group on the 10th, perhaps I can unload some there, but I need to get them potted up quick so they can start to grow their own roots to fill up that 2 inch pot at least! There will certainly be fish poop to be used to help in that situation!
Well, I best get a move on to go over the invoices from yesterday, pull the ones that still have inventory coming to them and sort them out and prepare for next Saturday. Not nearly as many people coming, and it looks like I might have a lot of that inventory to keep or sell at the plant sell on the 10th.
I hope all is well in your world, hold on tight, the storm continues for a few more hours, then we will have some nice weather this week. Until next time my friends – hugs to you and yours!