Last night the bubble on Bailynn’s back burst. Just like this past summer. It is oozing and swelling and the most frightening thing to witness in real life. The swelling has migrated to her shoulder. Her drainage is gross. No joy and jingles here, just prayers. No tinsel and no holiday cheer. Just fear. I… Read More
Bai’s new bed arrives tomorrow and we have to clear out the “institution” bed this evening to make room for it. It will be picked up Tuesday. Bob is in the garage making new runner boards for her beautiful white bead-board bed and touching it up with a fresh coat of paint. I am so… Read More
It started after Bai got sick a little over a month ago, we saw how bad she struggles to clear mucus while laying flat. She spent days throwing up while choking on drainage in her throat and we fought to try to get her even a smidgen upright. A trip to the pediatrician for medications,… Read More
Our journey has had its good and bad updates, its hard moments to swallow and get through. Today, I get to share a little bit of joy. I tiny furry bit of love. In an effort to find some Christmas joy and a some much needed snuggle love, our family went on the scouting expedition… Read More
Bai never gets a break. This past week she was stricken with a small cold her sisters lovingly shared with her – sense the sarcasm? Of course, she, unlike her sisters, could not clear the stupid thing! So off to the doctor we went and Bai is on another round of antibiotics. She is miserable.… Read More
Sunday I took a sample to the ER for another examination. Bailynn’s urine is STILL growing bacteria. They are going to grow it out and make sure she is taking the right antibiotic to treat it. This last round of antibiotic really upset her stomach and they are hoping to use a less harsh one.… Read More
Since the cast was removed two weeks ago, Bailynn has been in a miserable state. She was diagnosed with yet another UTI, she has spent hours screaming and crying, and she has started throwing up again due to being so upset. Her pain is distressing. Her tears are heartbreaking. We attempt all kinds of things… Read More
I feel like my family is stuck in a sick, dark version of the Groundhog Day movie. Our version is full of ridiculous superstitions that bombard us with misfortune. We persistently live on Friday the 13 and I feel like we are delicately balancing a box full of broken mirrors across the cracked floor of the… Read More
I have had such a positive response from everyone on the t-shirts they are receiving. Thank you to everyone who got one! I am also highly impressed with the quality of the shirt and the print! I have had a lot of people, after seeing them, ask where to get one! I thought about it… Read More
coffee coffee coffee! Read More
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