So it’s been hard not to say anything yesterday but I didn’t want to jinx anything. Things have been up in the air a bit because of her numbers going up and down. Then there was an issue of whether we could get her meds filled as they needed a prior authorization… so much suspense!
A lot has happened since I started this post earlier. We finally got the ok to go home with specific instructions about keeping Shyanne safe and what to do if she isn’t feeling well.
We were afraid that one of medications was going to hold us up but they were able to get an alternative medication. The doctor also apologized as he said we won’t be home very long. We do have a clinic appointment on Wednesday and then another bone marrow biopsy scheduled for Thursday.
She was a little confused at first but when she realized that we were leaving she was so excited. She kept looking at Sissy and me and just smiling so big! She was doing a happy dance all the way home.
Shyanne has transitioned home so well. She immediately began eating better and has enjoyed playing in her ‘office’ with her old toys and some new ones.
She has also been enjoying lots of Daddy snuggles. We can all tell that she is loving being at home.
It’s been a bit busy since we got home. I had originally said I just wanted to sleep for a day when we came home… I should’ve stuck to that plan. I’ve been busy opening packages/sorting things and trying to unpack. It’s been such a blessing to see how many people/organizations have sent things for Shyanne and our family. We appreciate you all very much. (I’ll post some pics at the bottom of the page.)
I was trying to sort out the dates and times of our upcoming appointments when I got a call from the doctor. Apparently there had been a mixup with her dosage of one medication which I had already given… luckily it was nothing serious but I made changes to the label so it would be right.
He also said he would find out about her appointment times and get back to me. If I don’t hear from him by Tuesday, I will call the clinic and get it all sorted.
It’s been a pretty good day today and we are so happy to home. we still have some things to tidy up and sort out. It feels like I might just be unpacking to start packing again to go but we’ll manage. One bonus from being so busy is that my legs aren’t nearly as swollen as they have been.
One last thing before I go. I know we will have lots of people wanting to visit but we do have a lot of precautions for our visitors to follow. We need everyone’s help to keep our warrior healthy while she is home.
The kids have had a hard time with these new precautions as our bedroom is Shyanne’s ‘safe room’. No one is allowed in without asking and they must wash/sanitize their hands and wear a mask. We have set up sanitizers and masks at every entrance door and at our bedroom door.
I’m going to go for now but we want to sincerely thank each and every one of you for supporting us with your love and prayers. It means so much that so many people care about our little girl and our family!
Many times over the past few weeks I’ve thought about how blessed I am. There have been times in the past where I’ve passed on different opportunities because I didn’t have anyone I could trust to watch my kiddos for me. If this had happened during those periods of my life, I really don’t know how I could’ve handled it. I’m just so very thankful for our ‘village’ and the support they given us over the past year. It really means more to me than I could ever put into words.
Below are the other pictures I promised. I will try to work on a page with links to the amazing resources we have been in contact with but you can check out our Instagram page for more information.