Connor is flying through the streets without training wheels on his bike, we had expected this to take hours of practice in the school parking lot. I was even prepared to pull out an article from the newspaper I had saved years ago "How to teach your child to ride a bike".
But Connor pretty much just took off just as fast as the training wheels were taken off. It was great to watch and cheer him on, he was so proud of himself, as were we.
Not to be outdone of course Cameron stepped in. For the first time ever Cameron actually rode his adapted trike, this three wheeler has been collecting dust for the last two years. No matter how often we tried to coax Cameron into trying the trike out we never got him more than a foot out of the garage.
Apparently all it took was seeing his little brother flying by as Cameron pronounced "I want to ride my bike!" we were delighted. As we strapped his feet in the custom pedal holders we weren't sure how long this would last, but he kept going and going. Even took a tumble and just kept on going.
In these moments we are reminded of what a true blessing Connor is, he pushes Cameron in a way no one else can. Although you will hear Cameron saying out loud "I'm not as fast as Connor, but when he stops I can keep going and then for a little bit I am ahead of him" he never is sad or frustrated by this fact. He says it just as it is, the fact of the matter. Connor of course always has to win so we are working on reminding him to let his brother take the lead every now and again.Huge accomplishments for the summer I'd say!
And the wheels continue to turn in our heads ever since Cameron's surgery. While the recovery from the actual surgery was the best, the recovery of getting Cameron back to "good" has not been so quick.
In the past we usually get the Cameron we know back following a surgery, the 100% Cameron. This round maybe got us 50%, we'd tell each other he just needs more time, but once the headaches returned we knew something wasn't right. The hospital bag was packed one evening, ready to go as Cameron was crying in head pain. It passed after several hours, as we were days away from his scheduled MRI and knowing his surgeon was on vacation we held out at home.
The MRI was two weeks ago, Dr. Bowman walked in to the room saying "How is he?" with a look on her face that told me she would be surprised if the answer was "He's great!" We shared our concerns and symptoms and then looked at the image. Now his ventricles were too big, a known risk of the surgery and valve change, so we all agreed it would be best to dial the setting down to 2.0 from 2.5 (the highest setting possible). The good news it's super easy to change the setting as the valve is programmed with a magnet (thus the reason I try to keep him away from magnets!). So we are on week 2 of being at 2.0. I wish I could say he's back to 100% but he's not, maybe we are at 75% now? I don't even know anymore.
He has another MRI in two more weeks and we'll see how his symptoms and images look. Dr. Bowman explained we just need to find a place where his brain is happy. And honestly this is far from a science it's like a guessing game of shoot the moon, how far should I pull the levers apart, ok now bring them back in, apart, in...and so it goes.
I sincerely hope to be able to post more often with more of our daily fun vs. always talking about something medical, but I am exhausted. I even left out the part about his kidney, despite being referred back to Kidney diseases after some elevated results on his last two rounds of urology work ups, his kidney function is good! There is a small hiccup that will require us to perform yet another test but we were told "no rush" and so I have yet to complete said test. When the box arrived with all the materials for said test it was addressed to Cameron, he got all excited convinced it was a toy, when I told him it's something we need to do for the Kidney Dr. there was an audible groan. Yeah, we'll wait.
We've packed in tons of fun in between all these moments of uncertainty. Cameron is back at the pool and happy to be wet!
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| 4th of July was great fun as Cameron watched the band in awe and helped make an awesome cake |
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| A Saturday morning sidewalk art show where the boys honestly tried to sell their artwork out of our garage - it's a hard sell, especially at 8:30am on a Saturday |
Cantigny Park to see old tanks and splash in fountains, the list goes on and on...
One month of summer to go, let's make it a good one!
xo
