This is a post to ask you for something. Not something big and hopefully something you want to help with. I am asking for a donation. Please I beg you do not stop reading here. This donation does not directly benefit our family...but it may save a life. This Sunday is our annual Chiari Walk for a Cure. It is sponsored by CSF. I do not write enough or say thank you enough to this organization! It is led by a very small staff who tirelessly raise funding to fight Chiari and related disorders. Sunday will be the third time we have participated in the walk.
Please know I do not ask lightly for donations. Our family truly does take fundraising very seriously. We know every family has something they are struggling with. For us...a donation is never easy. Our money is carefully budgeted and rarely do we have extra to give away. So I get it. Sometimes you just can't give. But if you can...please follow the link below. It would mean so much to us. Even a $5 donation is amazing! Nothing is ever not enough. Every little bit helps.
I was thinking back to those moments before Brooke's first surgery. This is what I wrote that day, "What an amazing day! From start to finish things have just gone well! Brooke was a trooper this morning and marched right back to the OR waiting. She was a little nervous about the hospital gown. I mean they are kinda ugly. But with some coxing and tears, she put it on. They gave her some meds to make her a little loopy, and I was able to carry her back to the OR. I stood next to her as they put the mask on for sedation. (the anesthesiologist was so cool! Very kind.) As she drifted off to sleep, we named all the colors of Bubble Gum! Dr Bolognese helped us and even comforted Brooke by rubbing her legs. With a high five from the anesthesiologist I headed out. Dr B says to me on the way out..."Wish me luck!" Funny Guy!
We waited 8 hours, and got great news! He was able to not cut the c1 vertebra. He feels this will keep her from having a wobbly head and needing a fusion. He had to make a slightly larger incision. But all of her cerebellar tonsils are back in her skull cavity. He used only a small bovine patch. He is confident this was a good surgery.
Aidan was then most upset because he wanted to see his sis. I told him it just was not gonna happen. With many tears we made our way down the elevator. As we step off the elevator, there she is! Brooke right on her hospital bed! The anesthesiologist called Aidan over so he could see Brooke was ok. They then took her on the elevator to PICU while Aidan went out of the hospital smiling!
So Brooke was resting peacefully in her room. She woke up with a scratchy throat from the tubes. But then she promptly asked "Can we paint my nails?" Gotta love that! Then a little later she wanted to color. Poor thing she would not even be able to hold the crayon right now. But at least she is positive! She looks good. Her blood sugar is low, but then she has not eaten since yesterday.
I was super sad to leave her, but Tim is taking the night shift so I can be with the boys and help my mom. Was kinda questioning leaving. I get back to RM House and Aidan is having an asthma attack. Of course I remembered his machine, and meds, but forgot the face mask! So after a little while my mom and I rigged a way to get a dose of allbuterol to him with his machine. He is now sleeping peacefully.
Thank you all for prayers. With these prayers we managed to survive a very hard day! We truly felt wrapped in love! I can't imagine not having all of our family and friends. Some people might say fate or karma, but here we like to just call it Faith! And in the end, I had smiles from all my kiddos and my hubby! Can't ask for anything else!"
Please help us fight Chiari! Thank You!!