We're Cruisin' ...

We've been working hard in PT to get Cameron to move his feet and we have success! He's starting to make his way across the coffee table. Incentives need to be high stakes - aka, anything electronic - remote, monitor, phone.

Take a look at the video to see him in action...

Two SOUR days...

I am keeping this brief as the last two days have been HELL, I am sorry but it's the truth. We have been at Children's from 9am - 2pm Tues and Wed, and there is not one second of exaggeration in that stmt. I have had it with waiting hours to see these Dr's it's ridiculous. Each day involved torturing Cameron which makes it so hard.
Tues - Kidney US - looks the same, still some fluid but no increase which is good.
CMG - Cameron made it through the torture, even slept a tiny bit during the procedure but once that bladder got full he let us know. Anyhow the really good news is that his bladder function has gotten better, it's not perfect but we'll take better any day!!! He is having some issues with his bowels so we are starting some meds for that. But all in all this made me feel very good about the surgery.
Today we had a 9:30 with the genetics Dr and we saw him at 11:15!!!! Then followed up with a trip to the lab which was jam packed. When they finally called us in for the blood draw we sit down on the chair and there is BLOOD on the arm rest thing UGH!!! Can I just say that I can't wait for the new Children's to open downtown - oh wait that will be in 4 years I guess I better hold my breath.
Anyway it's been two horrible days for Cameron, but sprinkled with good news on the bladder and we'll move on...till next Tuesday.

California Dreamin'

Cameron loved California! He was such a great traveler, we had a wonderful trip to Hermosa Beach to celebrate Josh and Debbie's wedding (congrats!!) and then we headed south to Laguna Niguel for three days of fun in the sun. Below is a video montage of the highlights of our trip. We belatedly celebrated Nana's 60th Birthday on the trip!

We are now gearing up for 4 weeks of Dr. appointments. This Tuesday will be a renal US followed by the dreaded CMG test with the catheter. The good news is we get to see Dr. Yerkes, the urologist after both tests so that we will have the results right away. Thus, no waiting game which is nice. The ideal outcome is the bladder function has improved, we'll see.
Next week Cameron will have a CT Scan, hopefully without sedation - I think he can do it without but we'll see. We're also meeting with orthotics to get him measured for something called SMO's this should help with his ankle support and such to hopefully improve his strength when standing, and eventually walking.
We wrap it all up the first week in October with a muscle test, orthopedic surgeon and Dr. Bowman, our neurosurgeon, to review the CT and discuss the overall post operative report now that we are 3 months post surgery. Oh and a hearing test just to be sure we're good there....
We'll be sure to update post Dr reports. It's less than one month from the Chicago Marathon, Dad is in the heat of training and we are all very appreciative of all the support we have received for the Hydrocephalus Association - and they are very pleased with our fundraising efforts.

I'd love to get a group together to cheer Matt on that Sunday - let me know if you're interested in heading out with Cameron and I!

We hope everyone had a safe and happy labor day.
XO

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