Tomorrow is a big day for Bryce, though if you saw him you'd have no idea. He doesn't even seem to notice at all.
What a wonderful idea, not to know to be worried or hopeful, or any way at all really. It's like a dog. Everyone loves a dog because each day, each moment for them is new and hopeful, even exciting. Just look at Bosco.
Well, I'm obviously not a dog or a baby (not to mention, I am a mom) so not only do I know, but I must, worry. Though I'm proud to say I'm reserving a bit of energy for my hopefulness too.
Bryce has his urology appointment first. We've known since our NICU days that this appointment would eventually come and that surgery is inevitable. Bryce has never been circumcised, but also he has what is referred to as chordee. Which, of course, will need to be surgically repaired.
After we're going to take advantage of being next door to Dell and stop in at Bryce's old stomping grounds - the Dell NICU - to pay a visit. I'm very much looking forward to this! And then we're having lunch with one of Bryce's primary nurses! Jennifer could single-handedly take credit for Bryce's not needing a ventilator or trach to breathe today and I wouldn't fault her one bit for it. It'll be so much fun to see her reaction to our Mr. Man now!
And then in the afternoon, and likely for the entire afternoon, we'll be at the ophthalmologist. We've been worked in because Bryce's pediatrician is concerned about his crossing. She's worried he may be seeing double, while his PT is worried he only appears to be crossing because his left eye is working overtime to try to make up for a not so great right eye.
Whatever the case, I'm anxious to get in there and see if there is something we can do about his vision. The other day he was standing (assisted of course, though only for balance) on his changing table when Caleb walked in the room. Now everyone knows that Bryce would jump the moon to smile at his daddy but Caleb was testing him. He came in without saying anything and stood right beside me, where Bryce was looking right into my eyes smiling and doing his little balance dance that is the cutest thing ever. Ever.
But he didn't notice Caleb at all. Once Caleb spoke to him, Bryce looked for what seemed like too long but then saw Caleb and grinned that sweet grin from ear to ear.
I hope the eye doctor will say she can do something to help him see but that he doesn't need surgery, a common fix for crossing, from what I understand. I know glasses would be bothersome to Bryce and a hassle but it would be so nice to see him recognize me walking up to him. A bit selfish perhaps, since he has no idea what he's missing.
Words cannot explain my trepidation. All parents worry about surgeries, well all that have the unique misfortune to have a child have surgery. But this takes it to another level.
You see, "the S word" as we refer to surgery in the Moline home, means intubation when a baby is involved. And though this is only hearsay, it is our understanding that baby Grayson is no longer with us because of a lack of oxygen supply during an MRI (while intubated) prior to a surgery. Grayson was given sedation for his pre surgery MRI but never woke up.
I can't bring myself to go into how that makes me feel. It's just too raw still. But as many of our readers are parents themselves I feel confident you can imagine.
So please be thinking of us tomorrow. Our hope is that we'll end the day having learned that there is only one surgery in Bryce's near future, that we can do something non surgical about his crossing and poor eye sight and that we'll have spent some quality time with our old buds from the NICU.
I'll be sure to let you all know more as I know more. Goodnight all.
Much love,
The Moline Family
You will be in my thoughts. I had the surgery to correct crossed eyes as an adult and my biggest wish when my daughter was born was that she wouldn't inherit it. It usually not the first treatment and if glasses help him recognize mommy - then YEAH! good luck!
ReplyDeleteGod will be with you and Bryce just hold on to your faith.
ReplyDeleteWe all love you Bryce and think of you every day. God bless you.
ReplyDeleteAunt Gene
Hoping and praying all is well and only one surgery is needed.
ReplyDelete