Here is a prelude to the video at the end of this post… In case you have not been reading from “day 1” here, Colten was born 10/3/2012, with Spina Bifida myelomeningocele, level L4-5 (low lumbar). Colten’s spine and nerves did not grow in a typical fashion. He cannot feel parts of his legs and […]
It was the weirdest thing last night… Colten was playing in his play yard then suddenly he rolled over, stuck his butt up, crawled over to the couch, pulled himself up and started RUNNING around the house! I was completely freaking out because of course he is only two months old and should not be […]
This crazy thought has been rattling around in my head for a couple weeks: I don’t want my son to walk. That’s insane, right?! Who wouldn’t want their child to walk?! But there is that thought, rattling around. I can’t seem to shake it. And it makes me feel guilty. Worst mother EVER. Then tonight […]
Colten’s motor response has been completely absent below the knees. Until a few days ago. When feeding him, we often mess with his toes, feet and calves, hoping to stimulate his body to make the connection that “hey, there’s something down there!” We were told that usually 2-3 weeks post-op is when you have what […]
Colten and I arrived at Mott Children’s Emergency Room around 5:30 PM. They were expecting us, which made it easy to check-in. Heck, the ER staff even called me around 4:30 to ask where we were since we had not shown up yet but were on their “expect soon” list. Talk about good ER service! […]
I hope not. I hope it’s us being paranoid but I’m thinking there’s an issue with Colten’s shunt. We will be taking Colten back to Mott Children’s today at some point. There isn’t a rush but his fontanel (soft spot on top of head) is very full and tight – similar to how it was […]
[Today was a super-long day, so this is a super-long post!] Tuesday we came back to Mott Children’s Hospital for Colten’s follow-up cranial ultrasound and long story short, had some movement of appointments for the better. So today (Thursday) Richard and I spent the day in Ann Arbor for Colten’s first “Myelo Clinic”. During clinic, […]
One of the local families we met last weekend at the Sparrow picnic recommended a book for us – Children with Spina Bifida – A Parent’s Guide, edited by Marlene Lutkenhoff. I immediately found the book on Amazon and ordered it. It arrived yesterday and I started reading it today. Despite all the complications and […]
So my husband and I appear to be approaching this Spina Bifida diagnosis in two very different ways, which is typical of our personality styles… I am envisioning that Colten will be born, have a simple surgery to remove a cyst/sac, and we’ll go on with our lives. If it is anything more than that, […]
Yesterday we had our first ultrasound for this pregnancy, at about 35.5 weeks along. We’ve had two other very healthy, natural pregnancies and births and saw no reason to need an ultrasound with this pregnancy (or the one prior!). However, this baby is presenting breech according to our midwife so off we were sent to […]
The Adventures of Colten Robert 