There's a lot on my mind right now with Katie being in the hospital, Camden's impromptu trip to the ER (feeding tube fell out again) yesterday, and me starting part time at work next week! But I wanted to make sure everyone knew that Camden is at 25 lbs now! (Okay, so his baby brother Luke is only 7 lbs behind him at a chunky 18--whatever!!). And to follow up with my last post, the Neuro said she did not think Camden has had any seizures, which was good news.
Yesterday after the ER trip, Camden seemed to be acting as if nothing had happened so we kept his PT and Speech appts at Wolfsons. Lisa said he rocked on the walker and I got to meet CamCam's newest Speech therapist(this is his 6th!). I was pleased to see that she is a fellow Nole and starts and ends each session w/ some practical OT excersizes: tomahawk chopping and war chants! She also knows her stuff and I got to see what her and Daddy have been working on with Cam. She holds 2 pictures up, one of a banana and one of a monkey and asks him which one he wants. If he choses the monkey, she'll have him distinquish between 2 wooden cutouts, of a monkey and a banana (to see if he'll pick the one he just chose). He gets them right almost everytime, but yesterday missed a few because he was wiped out after the traumatic trip the ER (I won't lie, he screamed and turned tomato-red when they forced the new tube back into the canal) plus the workout Ms. Lisa gave him.
But it was another reminder of how much we've been blessed with: Dedicated therapists, caring teachers, supportive Church, friends and family and Camden's can-do attitude and determined efforts. All of these ingredients (plus the special ingredient--prayer) will produce some very sweet results.
Friday, March 19, 2010
Friday, February 12, 2010
Not so sleeping Beauty
Hope you are enjoying our new picture and blog name. The pictures were professionally done by a photographer friend of my good buddy Heather's. Shortly after the earthquake in Haiti, he offered free 15 minute sittings in the park in exchange for a donation to Unicef. It was a win-win! Here are some more pics from that session.
Also, Camden had a "sleep" EEG on Wednesday. The goal was to get him to fall asleep while studying his brain waves for signs of any possible seizures. Camden was a very good and still boy for most of it. It was a little scary at first because he had to be restrained which he didn't like one bit. His arms were down by his side and they wrapped him up tightly with a sheet like a newborn. Between that and the Ace bandage wrapped around the electrodes, he looked like a mummy! After he got used to it he stopped crying and settled down. The room was actually very calming...dark, with a nice sound machine playing cricket noises. The whole thing took 30 minutes. Aside from the strobe light test (she put a strobe light about 2 inches from his eyes--it made him giggle!) all Camden really did was lay there and grunt occasionally. I did my best to sing and soothe him but he never went down for a nap! Finally the nice lady giving the test asked me to hold his eyelids shut so she could monitor that change. We'll get the results next week from the Neuro.
P.S. Luke was weighed today...a whopping 17 lbs!
Also, Camden had a "sleep" EEG on Wednesday. The goal was to get him to fall asleep while studying his brain waves for signs of any possible seizures. Camden was a very good and still boy for most of it. It was a little scary at first because he had to be restrained which he didn't like one bit. His arms were down by his side and they wrapped him up tightly with a sheet like a newborn. Between that and the Ace bandage wrapped around the electrodes, he looked like a mummy! After he got used to it he stopped crying and settled down. The room was actually very calming...dark, with a nice sound machine playing cricket noises. The whole thing took 30 minutes. Aside from the strobe light test (she put a strobe light about 2 inches from his eyes--it made him giggle!) all Camden really did was lay there and grunt occasionally. I did my best to sing and soothe him but he never went down for a nap! Finally the nice lady giving the test asked me to hold his eyelids shut so she could monitor that change. We'll get the results next week from the Neuro.
P.S. Luke was weighed today...a whopping 17 lbs!
Tuesday, January 12, 2010
Time for an update...
Luke had his 2 month Dr. appt. last week and weighs 15 lbs 4 oz! He had to get shots that day and the Dr. said that due to his weight, he could be given the 2nd level of dosing of Infants Tylenol--hee hee!!
Camden is still not eating at school and we're trying to think of creative ways to fix this. We think he's starting to shake his head "no" and nod "yes". Next time you see him, test him out and see if it's not wishful thinking on our part! He is having a run of successful feedings by feeding tube and thank God we've found another anti-reflux medicine because Camden was refusing to take his Prevacid solutabs. It's Prevacid by suspension liquid, so we can shoot it right into his tube--woo hoo! The granulated tissue around his feeding tube button is still a major pain and we're still having to silver nitrate it about once a week. Really wish we could find a better way to eliminate it! Aunt Mary gave us some super helpful suggestions over Christmas when she took a look at it. A former wound care nurse, she knows her stuff! Some of what she said has already helped (if you're reading this Aunt Mary--I know I need to call you back and follow up!).
I'm back at work and now that Luke has started day care (which is going FABULOUSLY, I might add), I'm starting to finally be more of a case manager! But I was stressed that my milk supply was dwindling. The stress made it dwindle more, which stressed me more...you get the idea. I got some great suggestions though, and am very happy to say things are better in that area now! Luke is also drinking 1/2 breastmilk 1/2 formula while he's at daycare. They say he's tolerating that well. At night, Luke is still sleeping a 4-5 hr. stretch and waking to eat but goes down right afterwards. He'll wake up about an hour later when the pacie falls out of his mouth, then every 30-40 minutes when pacie falls out again. He's discovered his fingers and we'd let him suck on those but when he does, his fingers turn to ice since it's been so flippin' cold lately! So until things get warmer, I'm still stumbling over to his bassinett in a stupor each night. Kevin lets me sleep in on the weekends and grilled us some steaks tonight--what a guy!
Our new morning routine is starting to get a little smoother: Kevin takes Camden and I take Luke. So the impossible is getting easier and Kevin and I are making a lot of effort not to take our sleep deprivation or frustration with Camden's limitations out on each other. We're enjoying this phase of our lives, knowing these sweet days won't be here forever because kids grow up way too fast. :)
I know this was a long post--thanks for taking the time to read.
Camden is still not eating at school and we're trying to think of creative ways to fix this. We think he's starting to shake his head "no" and nod "yes". Next time you see him, test him out and see if it's not wishful thinking on our part! He is having a run of successful feedings by feeding tube and thank God we've found another anti-reflux medicine because Camden was refusing to take his Prevacid solutabs. It's Prevacid by suspension liquid, so we can shoot it right into his tube--woo hoo! The granulated tissue around his feeding tube button is still a major pain and we're still having to silver nitrate it about once a week. Really wish we could find a better way to eliminate it! Aunt Mary gave us some super helpful suggestions over Christmas when she took a look at it. A former wound care nurse, she knows her stuff! Some of what she said has already helped (if you're reading this Aunt Mary--I know I need to call you back and follow up!).
I'm back at work and now that Luke has started day care (which is going FABULOUSLY, I might add), I'm starting to finally be more of a case manager! But I was stressed that my milk supply was dwindling. The stress made it dwindle more, which stressed me more...you get the idea. I got some great suggestions though, and am very happy to say things are better in that area now! Luke is also drinking 1/2 breastmilk 1/2 formula while he's at daycare. They say he's tolerating that well. At night, Luke is still sleeping a 4-5 hr. stretch and waking to eat but goes down right afterwards. He'll wake up about an hour later when the pacie falls out of his mouth, then every 30-40 minutes when pacie falls out again. He's discovered his fingers and we'd let him suck on those but when he does, his fingers turn to ice since it's been so flippin' cold lately! So until things get warmer, I'm still stumbling over to his bassinett in a stupor each night. Kevin lets me sleep in on the weekends and grilled us some steaks tonight--what a guy!
Our new morning routine is starting to get a little smoother: Kevin takes Camden and I take Luke. So the impossible is getting easier and Kevin and I are making a lot of effort not to take our sleep deprivation or frustration with Camden's limitations out on each other. We're enjoying this phase of our lives, knowing these sweet days won't be here forever because kids grow up way too fast. :)
I know this was a long post--thanks for taking the time to read.
Tuesday, January 05, 2010
Sunday, January 03, 2010
Thanks for the memories, Bobby!
We were lucky enough to get tickets to the Gator Bowl, in which Bobby Bowden coached his last win, leading the Noles to a sweet victory over the WVU Mountaineers! He was given a very beautiful sendoff, with a moving tribute on the Jumbotron during the pre-game festivities. The game was definitely a memory any Nole fan would cherish. There will never be another coach of such high character, wit and morals and I'm so glad that we could be there for Bobby's retirement party!
Special thanks to Nana and Gramps, who got us the tickets for Christmas and provided 8 hours of childcare so that we could brave the rain and tailgate before the game. It was a blast!
Special thanks to Nana and Gramps, who got us the tickets for Christmas and provided 8 hours of childcare so that we could brave the rain and tailgate before the game. It was a blast!
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