Ally wanted to sit in big sissy's lap The breathing tube is out. Just pulled it, about an hour ago. Placed on BiPAP. So far so good. We can usually tell within 2-4 hours if she is going to fly.
PICU Day 9. We've had a rollercoaster of a week. Well... not an American Scream Machine week, but a Miracle Strip kids coaster kind of week. Bentley wanted to drive us a little crazy a few nights ago and start running a high fever while throwing up (all while on the ventilator with tube feeds running). The anxiety only took one year of Lindsay's life, could've been worse. Her lung started allowing some air back in on Thursday. Since then, she has progressed pretty well, all things considered. Slow but steady.
It is very obvious Bentley is bored out of her mind. Around Day 5 she started pulling out her pigtail and fighting us when trying to keep her on her side. She hasn't really wanted us touching her until the last day or two. We tried putting her Angel Ears (what we call her cochlear implants to Ally) on, but she basically told us "No Thank You". She DID get a real bath last night. Not a bath-tub-bath, but a wet-to-the-bone with a wash basin and all natural dye-free, scent-free, suds-free, gluten-free soap. When the nurses aren't looking I may use some Dove. We feel good with the progress. Her docs, nurses, and theraptists have been taking great care of her, and are very in tune should she take a turn and need another couple days of rest.
Thank you for the continued prayers. This evening will tell us a lot. Although we are ready to spend Christmas here, I would rather her sitting up and able to eat chicken salad.
At least we can say it has been a productive week. Ally is now to the point of Rotten (with a capital R), thanks to Mimi and Pop. Lindsay has signed up both of our Team Bentley Mercedes Marathon BellRunner teams, you can donate by clicking the links. Mom came to town and washed our sheets. Three big wins. More updates soon. Have a Merry Christmas if we don't see you. I've got the Bing Crosby playing in her PICU room, sorry if there are any Scrooges down the hall - I'll give you a Christmas Tree Cake. Mele Kalikimaka!
Regarding our Marathon teams: I have committed to the relay AND Half marathon this year, for some crazy reason. For those who don't know, the primary beneficiary of the Mercedes Marathon is The Bell Center for Early Intervention Programs (where Bentley received the majority of her therapy until she was 3yo). I am proud to say I have been asked to serve on their Board of Directors for the next few years. We are so incredibly thankful for the impact they have had on Bentley's development, and our support system. We run the marathon as official BellRunners, supporting the Bell Center with any money raised. If you would like to run too, sign up, or let us know. We can always start another team.
PICU Day 9. We've had a rollercoaster of a week. Well... not an American Scream Machine week, but a Miracle Strip kids coaster kind of week. Bentley wanted to drive us a little crazy a few nights ago and start running a high fever while throwing up (all while on the ventilator with tube feeds running). The anxiety only took one year of Lindsay's life, could've been worse. Her lung started allowing some air back in on Thursday. Since then, she has progressed pretty well, all things considered. Slow but steady.
It is very obvious Bentley is bored out of her mind. Around Day 5 she started pulling out her pigtail and fighting us when trying to keep her on her side. She hasn't really wanted us touching her until the last day or two. We tried putting her Angel Ears (what we call her cochlear implants to Ally) on, but she basically told us "No Thank You". She DID get a real bath last night. Not a bath-tub-bath, but a wet-to-the-bone with a wash basin and all natural dye-free, scent-free, suds-free, gluten-free soap. When the nurses aren't looking I may use some Dove. We feel good with the progress. Her docs, nurses, and theraptists have been taking great care of her, and are very in tune should she take a turn and need another couple days of rest.
Thank you for the continued prayers. This evening will tell us a lot. Although we are ready to spend Christmas here, I would rather her sitting up and able to eat chicken salad.
At least we can say it has been a productive week. Ally is now to the point of Rotten (with a capital R), thanks to Mimi and Pop. Lindsay has signed up both of our Team Bentley Mercedes Marathon BellRunner teams, you can donate by clicking the links. Mom came to town and washed our sheets. Three big wins. More updates soon. Have a Merry Christmas if we don't see you. I've got the Bing Crosby playing in her PICU room, sorry if there are any Scrooges down the hall - I'll give you a Christmas Tree Cake. Mele Kalikimaka!
Regarding our Marathon teams: I have committed to the relay AND Half marathon this year, for some crazy reason. For those who don't know, the primary beneficiary of the Mercedes Marathon is The Bell Center for Early Intervention Programs (where Bentley received the majority of her therapy until she was 3yo). I am proud to say I have been asked to serve on their Board of Directors for the next few years. We are so incredibly thankful for the impact they have had on Bentley's development, and our support system. We run the marathon as official BellRunners, supporting the Bell Center with any money raised. If you would like to run too, sign up, or let us know. We can always start another team.
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