About a month ago Sylas had an appointment with his pulmonologist (lung doctor). His lungs were sounding great, but the doc suggested that Sylas may be showing early signs of spastic diplegia which is the most common form of cerebral palsy. This type of CP typically just affects the legs and not the arms or the trunk. Right now, Sylas has increased tone in his legs which makes it a little more difficult for him to bend his legs, so in turn, he's having a hard time learning to sit. Also, when helped to a standing position, he stands and walks on his toes instead of on flat feet. WOW! Going to the pulmonologist, you don't expect to hear the words cerebral palsy! Of course we knew it was a possibility with Sylas being born so premature, but still, no parent ever wants to hear that their child may have CP. After about a week of crying and walking around in a fog, I decided to suck it up and figure out a way to help Sylas work through his challenges. I've been searching the internet and finding amazing support groups comprised of parents who have kids with CP or other difficulties and moms who are blogging about the ups and downs of having a kid with CP. Ryan and I have also been helping Sylas sit and sit and sit..and then sit some more. We've gotten great tips from Little Man's physical therapist and he seems to be slowly improving. He's nowhere near sitting up by himself, but his balance seems to be getting better and we're hoping he'll get there soon. He still hasn't officially been diagnosed with CP. He sees his pediatrician (she'll make the actual diagnosis) on Thursday and it may be too soon to tell. She'll probably want to schedule an MRI or some other type of testing. I guess I'm realizing that whether or not Sylas has CP, he's still our same silly Sylas, amazing us every day with what he can accomplish.
Here's a little video to show you how well Sylas is doing. He does his best sitting with the singing toolbag in front of him.
Monday, July 28, 2008
Thursday, July 24, 2008
One of my favorite things about Sylas is how happy he is when we get him out of bed in the morning...or after any nap for that matter. Almost without fail, he'll give you a smile that makes you feel like a million bucks. He has just recently started sleeping in his "big boy bed" otherwise known as his crib. He had been sleeping in his Amby Bed, which was one of the best purchases we've ever made. When Sylas first came home from the hospital, he screamed every time we put him down to sleep. We tried everything, even the "no-no" of having him sleep in our bed. The only way he would sleep is if he was being held and not only that, the person who was holding him had to be sitting up. It went on like this for about 3 weeks, with Ryan and I taking 4-5 hour shifts during the night, going crazy with sleep deprivation. Finally out of desperation, we bought the Amby Bed. I remember the first time we put him in there to sleep. My mom was with me and I was beyond excited. I rocked him to sleep then gently layed him in the swaying hammock. He looked so peaceful and content. It was a picture perfect moment - for all of five minutes. All of the sudden he realized that the gentle swaying was not anything like his mommy's arms and he started balling and I started balling. It was very distressing. Thankfully I have a husband who is able to help me put things in perspective and within a couple of weeks, Sylas was loving his new bed. Loving it so much that we were dreading the switch to his crib, but Sylas once again surprised us and is now sleeping exclusively in his crib. Those of you who know how much he loves his Amby understand what a HUGE deal this is. We are so proud of you Little Man!!!
*The picture at the top is of Sylas in his Amby during his first month home.
P.S. Happy 16th Birthday Auntie KK! We love and miss you!
Wednesday, July 23, 2008
We have yet to post any pictures from Sylas' Birthday on Flickr, so I thought I'd put some up here for your viewing enjoyment. His party was a huge success. Close to a hundred people showed up and Sylas was on his best behavior for the entire thing. He did experience his first sugar rush and then inevitably his first crash. Very cute! A big thank you to our family for helping with the decorating and clean up. We love you!
Tuesday, July 22, 2008
Wow! What a year. I can't believe it's taken me so long to get this blog up and running. It's been on my to do list forever, but with everything that's been going on, it wasn't getting high priority. Maybe I was waiting for life to slow down. Silly me. My life isn't slowing down, but is full of adventure, triumph, trial and most of all love. So, here I am, knowing the importance of documenting Sylas' life and also knowing that there are still many people out there praying for our family. I'm hoping that this will be a place where I can say what I really think and how I really feel and also a place where I can connect with people around the world who have followed our story and have loved us through it all.