The play room at the St. Pete hospital.
She brings smiles to all the faces of those in the hospital, not just her bubby.
Gosh I miss her so when we're not together, then I see these legs and I'm so sad how fast she is sprouting.
Some of the nurses are the best humans ever. I love when they treat Clara as an equal, some of our therapists do too. I love the people that don't just notice Everett's needs, but Clara's needs too. To be a big sister to a sweet little brother who needs a lot is a special thing to be, she needs all the things he does, and this nurse knew it. So, she dolled her up in gloves and even gave her a nurses light. Clara was in heaven.
Spending time with her cousins.
Pool party, we REALLY wish we were there too!
I got strep, double ear infection, and a UTI from never going pee because he would get so sad if I put him down. I want to BURN these polka dot chairs that I've spend WAY too much of my life in, I'm 100% sure Everett would light the match for me!
I think I peed the entire ten minutes he let me leave him down before waking.
Toys sometimes worked.
Sissy always works! No one, I mean no one can make him smile like she does.
Day 6 of no sleep, I look like death. This pic was from 6:30 am when it started to get light in our room and he fell into a deep sleep again, when it was too bright for me!!!!!!!!!! I waved the white flag after this night and Andre stayed for a night, my bed felt sooooooooooo good.
After talk of a central line, IV number 6 and serious talk about a G-tube he decided to eat some pizza. THANK THE HEAVENS!!!!!!!!!!!!!! It was about a 24 hour period left before we would have to get REAL real serious about a g-tube. He hadn't eaten in about 5 days, lost 6 lbs and was wasting away. He continued to sign "eat" and "drink" but wouldn't, my heart was breaking.
Thank you, to the person who created pizza, I'm forever indebted.
Doe and her posse!
Things are always SO much better when we're all together.
Our view wasn't bad. The John Hopkins Research Center really blocks the bay, but I'm excited for our town!
Friday morning I walked into the room right after IV #8 was removed. I was devastated. I can't even imagine what Everett was feeling. Andre left for work while I held my baby boy down, after being wrapped up since he learned how hard he needed to fight to avoid needles. After two pokes in his already bruised and beaten up arms, they attempted his foot. It was about 45 minutes of poking and prodding before we both screamed and called it quits. A new nurse came in and I must have looked like I felt and she just hugged us while I bawled in her arms. She was so sweet and knew I wasn't going to let her get another needle near my son. She agreed with me. She left to get the doctor to put him on the list for a central line. Thankfully the surgery list was booked and I begged to go home. As soon as I said, "Let's go home Everett." He was a new man. He perked right up and was smiling and comfortable, he would let me leave him in his crib, or what I call his torture chamber. I don't know why they do IV's where the kids sleep. Kids are smart, they associate, and don't underestimate Everett, he learned how to shut things down faster than most, the nurses all saw it.
Thank you for the cool giraffe Porcello's! He loves it.
Our road was still long and I paced the house all day not knowing if he'd eat or drink enough to avoid going back. If we went back he'd be put on the list for a central line right away. Slow but steady, he won the race, as he always does. Pizza and sneaking yogurt for days. He didn't drink for almost three weeks after surgery. I seriously thought he needed to learn how to drink again. I was envisioning swallow studies and hospital stays...
Thank you Everett for being as strong as you are in all the challenges you face. You're incredible. You persevere through pain and exhaustion with a smile and immense strength. You are amazing, I'm so lucky you're mine.
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