A Walk is a Walk Except When it's a Great Cause

We're excited to say it's that time of year again when we're preparing for the Hydrocephalus Association Walk here in SLC. And the best news is we except to be healthy enough to join the crowd.

We would love to have you join us for the day (Sat., 2 Sep) or contribute to our team or just send along more good thoughts towards our efforts. We're tickled that this year half of the money we (as our local chapter) will be directed a fantastically talented group of researchers we're lucky enough to have here in Utah.

Check out our link Catch the Wave of Awareness and consider joining us!

Pay the Piper...

Not too surprising but after two weeks in the hospital with a littany of issues and procedures we would have a ton of follow up visits including Plastic Surgeon, Neurosurgeon, Sheild (Helmet) follow up, Neurology, and then catching up with the Early Intervention schedule we had postponed for an extra week has put us behind. For example, we had three visits to Primary Children's Hospital in one week ... and none on the same day.

Phew!!

Good news is Cole is in much better spirits than he was when we first came home. He was still in pain as we moved him. But every day he makes good improvements and starting to resume some activities (sitting up, rolling up) and he's become MUCH more vocal. Some good vocals like laughing and singing, some not so good vocals shrieking at the top of his lungs (at least we hope he's hit his limit). He seems as surprised when we makes those noises but then quickly tries out his vocal chords. Our days of taking him to the movies may be coming to an end :D And ouf course there is a lot of laughter and at the strangest of things (e.g., running of the shower, running a spoon around a bowl, fluffing a pillow). Look for videos on all of the above ... if we can stop laughing ourselves long enough to take the video / picture.

So thanks for your patience as we get back up to speed and begin loading pictures we've been taking over the past few weeks.

There's No Place Like Home, There's No Place Like Home ...

Now that we've recovered and caught up on some much needed sleep, we thought we'd better send out a post with an update.

First and foremost, we can not stop saying thank you to everyone who sent good thoughts our way, prayed for Cole, our doctors, nurses, and us. We are so so touched with everyone's generosity and love for our sweet and special son.

We finally made it out of the hospital last Friday (what seems like a month away) and have spent the last few days just recovering and trying to get back to our semi-normal life. The doctors were very pleased with the progress he's made, his head and incision look good. We head back to the doctor next week to get the shunt stitches removed and probably another CT scan -- pretty soon we'll have hit the two dozen mark on the CT scans. Cole is slowly returning to his old self - smiling more and more, laughing, playing with more toys, squealing. And his pal Ellie is glad to have him home, once she got done smelling him ALL over. As we expected, we took a few steps back with regards to sitting up and rolling over, but we're confident we'll be right back there soon.

He's still in some pain when we pick him up in certain positions. But that's to be expected with all of the work they did in his noggin. And he's still got some fluid sloshing around. We're on a strict routine to switch him from side to side about every two hours -- don't want to lose that beautiful new head shape. And that tends to cause some puffiness in one side or the other (depending on the side he's on). We've noticed a little bit of a droop in one eye (we saw some of it in the hospital but because he was so swollen, we couldn't decide if it was longer term effect) - we're waiting to see if it sticks around or is more like the palsy incident we had after his last shunt installation. It may be something we have to watch for and advice the surgeons on subsequent shunt installations ... hopefully years and years from now.

And he's still on his seizure medication as a precaution, because it's one of those meds you have to be slowly taken off (vs just stopping). We were able to switch him from Prevacid (for his reflux) to Zantac (thanks to his good and willing doctors and the good advice of one of our hydroparents). And he's been off his more serious pain meds (Lortab) for several days and we're only using Motrin every other day -- so hopefully we can be completely off of that as well. And his hair is really beginning to come back fast.

And with Cole doing much better, Shawn was able to return to group (thanks to his colleagues that filled in for him over the last two weeks), which meant a trip out to Grandma Jacquie's and Grandpa Keith's. Next, we're ready to where the therapists can start their routine ... a really positive step.

Thanks again to everyone - you mean the world to all of us.