Hi everyone. Here is an update on the Russo household.
Still no day nurse to take Ben to school on Monday, Tuesday and Thursday. Ugh, I hope we find someone soon so they can start orienting with Ben and get to know him before school starts. Does anyone know anybody? Please spread the word.
Ben is still a "go" for surgery on Wednesday the 13th. He is having a Head CT, airway scope (MLB), ear cleaning and a look at his saliva ducts and possible draining of them (when Ben lifts his tongue you can see his ducts have filled up and are the size of Skittles - possible complication with his previous drool procedure). We are so hoping for a good report of his airway and are able to start surgery to get his throat and nasal passages fixed.
Ben is a rolling machine again. After 7 months of no rolling after his leg break, he is back to his old rolling self again. Yay!
Ben is going to turn 3 this weekend! I can't believe it. We are waiting to have his birthday party until after his surgery so Ben can have some licks of ice cream. Happy Birthday little guy! You amaze me everyday and I'm so inspired by you.
We have been finishing our basement so we can have another living room space. I'm happy to report that it is getting close to being done. It will be great to have that extra room! I will also have a dedicated space down there to do my scrapbooking.
And last but not least, Ben had a pre-surgery physical today and got a clean bill of health (minus an ear infection). He weighed in at 29 lbs! I'm going to need a crane to lift him soon :) But Ben's doctor is insisting he goes to school with his oximeter hooked up. This is in addition to his emergency trach bag, suction machine, and backpack we already have to take with him. And being hooked up to his oximeter would only give him a few feet of freedom. I am absolutely against it because I want Ben to develop and live a happy life without so much medical equipment. He said in my care I can do what I want but when with a nurse, he refuses to change the orders. I'm still fighting this battle. I understand his concern, but I wouldn't have a nurse with Ben that I didn't trust and kept on eye on him constantly.
5 comments:
Gosh, Amy, I wish I knew someone to help you find a nurse for Ben! I would hate for him to have to miss starting preschool because of no nurse, but you'd definitely want someone with him--and someone who knew his needs well and that Ben was comfortable with. Ugh! Did you try contacting Dr. Wiley to see if she had any suggestions?
Sounds like Ben is getting his 30,000-mile tuneup in the OR, just like Katie had last week! Hope it all goes well.
Hard to believe he will be 3 already this weekend! Give him a big birthday hug from us!
xo
Leslie, Arlin & Katie
I hope you guys find a nurse...I'm surprised it isn't up to the school district to find a nurse. Things are different in the US maybe I guess.
I'm glad to hear he's back to rolling again and good luck with the getting that dr order changed. Tough call...
Hi Big Guy.....early happy birthday to you but will be seeing you on the 16th for your party. Already have your gifts bought and wrapped. Love to you all and see you soon.
Hugs & Kisses,
Gramma Mo
I'm confused too Amy on the school nurse issue. I believe it is their responsibility to provide the nurse...federal law.
Are they working on it? This also should count as separate "hours" than what you receive at home.
I hear your concerns about the oximeter but you know what...it won't stop him from interacting and playing as much as he wants to. And perhaps after some time, the doctor will feel more comfortable. I totally get what you are saying though...the less equipment the better!
Thinking of you guys! Can you believe we have been on this journey together for THREE years!?!?
Excited to hear about your new scrapbook space...that's always fun! And you deserve it my friend...good for some "Amy" time!
Take care...
I hope you find someone soon and I will keep Ben in my thoughts and prayers durning surgery.
Hugs,
Crystal and Eva
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