What a week. Need I say more?
Yes? OK…here goes!
We dealt with lots if poop, vomit, (you asked for it all!) being put in isolation because of it and Ryan has been in the best moods still. He has had leads on his head all week, had the tech’s come in and mess with him, change the leads around, regluing some, and manages to still flirt with all the ladies through it all.
We have been stuck in a room – mostly by choice after word came we were out of isolation – playing with lots of stickers, glow in the dark bubbles, the same books, movies, and the same mom 24/7 for the last 7 days…and he has only really cried and whined for me twice.
Ryan has used more of his signs, verbalizations, communication in HIS way to tell me what he has wanted than I’ve noticed in a long time…even with his one hand in a board and hidden because of an IV.
He has only had three IV ports placed this whole last week which is a vast improvement from any other time we’ve been here for this amount of time, really! Ryan tends to get bored, thinks the nurses and mommy are bored and need more excitement and he pulls the IV out. This time, the first in his left arm was blown within 48 hours, the main reason the second in his foot/ankle was taken out was due to the nurses needing to flush it and the whole thing came out from the tape being pulled too quickly.
Ryans schedule isn’t out of whack too bad this stay, due to the fact we’re not sleep depriving him. His eating habits are unreal and I actually forgot to put him on the scale before we left just to see what the odds were of him gaining weight with all of those milk shakes he was drinking this past week!
Through all of it, Ryan and I have really appreciated the visitors we have had this week. It has broken the day up and I am really so honored and blessed that you would take the time to not only travel to see us, but to also spend some time with us too! Some have kicked me out of the room so I can get some time in the real world. Some have allowed me to take time for a walk or even a couple hours to get some things done…
To those that offered to stay so I could go home for a night and to Aunt Abby who stayed with Ryan on Wednesday night, thank you! My time with Britney and sleep in my own bed was really appreciated. And from what I know, you had a blast with Ryan.
To those who offered and had spent time with Britney, you have made her feel more than comfortable, happy, and still kept up with some type of routine when I couldn’t.
Lying on a bed on an island last night (I wish!) I was looking toward the crib/cage Ryan was sleeping in and thinking about him.
He has been through so much more than any almost 5 year old should go through. He and Brit are absolutely amazing. I am without the right words to even express my son, my amazing daughter, and what we have all been through over the last few years. I can only pray that God will take our burdens, worry, fear, illness, and give us a life full of happiness, good health, strength, courage, and a support system that won’t be upset or scared away by our – to some – unbelievable story. I pray the answers are put right in front of us to better make the tough decisions.
For those of you who have helped when I just needed a friend, a lending ear, a shoulder, or nothing at all and have just been there.
I want to thank you. From the bottom of my heart – I don’t know that saying it is enough because I feel like so much more is owed back to all of you for the love, laughter, support, care, kindness, and time…
Thank you!! Thank you!! Thank you!!
I’ll update more later when we’re all settled and ready for the new week!