Rylan's been off the TOBI for 7 days now, so this morning we took her down to our pediatrician's office to get another throat culture done. We should get the results back before the end of the week, fingers and toes crossed that this is another negative! We also started using a nasal mist periodically throughout the day to help with dryness, and it seems to really be helping her. I've noticed the dark circles under her eyes have gotten a lot better.....
She is such a trooper.....she was also due to get a vaccination this morning. Normally, under NO circumstances, will she EVER get up on the bed at the doctor's office. She knows the second she gets laid down on it, someone is either sticking a huge swab down the back of her throat or a needle is getting plunged into her leg. So, we've learned how to maneuver her on my lap for all of it. But, for some reason, today was different. When the nurse came in at the end of the appointment with that needle in his hand, she actually let me put her up on the table! She didn't take her eyes off of him the entire time, BUT she let me lay her down. Wow. So, I held her little hands and on the count of three, both Kohen and I turned our heads, shut our eyes and waited for the wails. And, there they were. LOUD and clear. BUT, the difference today was they lasted a whopping 6 seconds. AND, through her tears, as she's rubbing her bare little leg, she kept sobbing "Tank you....tank you....tank you" to the nurse. Unbelievable. That poor nurse didn't know how to respond. He looked at me with tears in his eyes and said in all the years he's been in the medical field NEVER has anyone EVER said thank you after getting a shot. That little girl NEVER ceases to amaze me.....
We got the tree up over the weekend, and read our book "The Elf on the Shelve".....Santa's little scout elf has been working WONDERS in our house! Sibling rivalry is down by about 90 percent and whininess is down by about 30 percent (with a 2 year old diva in the house, ANY decrease in whininess is welcome!!). The kids can't wait to ransack the house every morning looking for the new spot the elf is hiding in! Here is a behind the scenes video of the elves at training camp (this video has become the new household favorite).....enjoy!
I am a 30-something stay-at-home mom whose daily ramblings may never change the world, but they just might save my sanity. This is my journey of raising a son & his 'cyster', in the hopes that sharing our story will help spread awareness for cystic fibrosis.
Daddy
The most amazing dad/super-hero you will ever meet. I knew from the moment I met him he would be a great dad, but I could never have imagined the truly AMAZING father he would become. He is my rock & our kids' favorite playtoy. I truly can not imagine life without him. Thank you GOD for bringing this Prince Charming into my life.
Big Brother
My son...the light of my life. He is so many things. Sweet. Adventuresome. Handsome. Mild mannered. His sister's hero. Unbelievably kind. Curious. Mindful. Athletic. Imaginative. Oh, and did I mention sweet? There are not enough words in the world to describe everything this little man is to me. He is what puts a smile on my face through it all...
Little 'Cyster'
My baby girl. Kohen's beloved little sister. Daddy's angel. She has turned our world upside down and inside out, and yet make it perfect all at the same time. She was diagnosed with cystic fibrosis when she was 2-weeks old. My son changed my life, my daughter changed my world. She has given me gift, after gift, after gift. She has taught me so many lessons on life and love. She has shown me how to REALLY live in the moment and to TRULY appreciate everything, no matter how small the blessing.
About Cystic Fibrosis
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. With advancements in treatments and medications, many people with the disease can now expect to live into their 30s, 40s and beyond. This is why I will fight for my daughter's cureevery day of my life. An average life expectancy of 37 years just isn't ok with me.
Rylan's Current Treatments
Vest treatment 30 min, 2-3x per day
Albuterol nebulizer 2x per day (opens airways)
Pulmozyme nebulizer 1x per day (thins mucus)
Cetirizine 1/2 tsp 2x per day (seasonal allergies)
Rylan's acceptance. So sweet, frustrating, empowering, and amazing all in one.
ReplyDeleteWhat a special moment. Thank you for sharing.
Lots of love from Joshland!