Monday, July 28, 2008

Sitting Pretty....Handsome

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.

8 comments:

  1. What a big boy! He's doing a great job with using his hand to help balance. I love his crawl too...so speedy! :) I'm so proud of you, little man!

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  2. I must tell you that I feel like I know you and your family! I followed you throughout your journey (mostly through Noemi's photography blog) and have prayed for you countless times. I am so happy that you are experiencing the joy of motherhood through your amazing little boy. I gave birth to twin girls at 24 weeks - one went to heaven at 13 days old and one is 2 1/2 and making each day full of joy and wonder for us. Losing a child (or children in your case) is a hard road to travel (to say the least). Your faith is amazing and through my experience, I know He can carry you through trials you never thought possible. I know you treasure every moment. :)

    You may already know about this blog but if not, check it out. Their story has inspired me many times along the road of prematurity and beyond.

    www.micropreemietwins.blogspot.com

    Know that you have amazed and inspired so many with your story. I will continue to lift you and your precious family in prayer.

    God bless,
    Lisa

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  3. I too have been following the going ons in your amazing little family for the last year or so.

    We have been battling infertility for 5 years and that is what originally sparked my interest in you. I was so angry at others, and the mean things they said. However, I know that they just don't "get it". I am so proud of you... and I just have to tell you that.

    Kudos to you both for being the amazing parents that you are. Sylas is so adorable. He has an amazing light about him that will continue to grow. What an amazing Little Man. With at least 5 angels looking after him, this little guy can't lose!

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  4. Too cute! Thank you for sharing. That is so great that he is crawling. I had twins at 33 weeks and one of them didn't crawl until 1 year! She is not walking or standing on her own yet. Keep working with him...he is doing a great job!
    Melissa

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  5. Hi sweet little boy! Brianna, thanks for starting this so all of us can hear how you, Ryan and Sylas are doing - even if I do get to see you on Sundays. I love, love, love the videos and love seeing his smile. So beautiful - you are loved!
    Jacquelyn

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  6. Ditto to what Amy said, my battle with infertility is what sparked my interest.

    We serve a faithful Creator, and whatever God has planned for Sylas and your family at this point, He will guide you.

    Jer 29:11 (NIV) "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." ...

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  7. Brianna&Ryan-You continue to be in our prayers along with Baby Sylas.He is a blessed boy to have you both-what a gift to wake up to each day!

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  8. I can understand what you are going through on disability side. I am disabled since before I was born, I have Prader Willi Syndrome. When I was baby I had poor suck and considered a floppy baby. I did not learn to sit until almost 2 years old and walking was around 3 years old. I only made few simple one words which were hard to understand but real talking was not until 3 years old. I went from preschool school through junior high with speech therapy. I dealt with poor muscle coordination and tone. Along with eating disorder. God Bless your incredible family.

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Thank you so much for taking the time to share. I love hearing from you.

P.S. I'm sorry for the word verification step, but oh, my. I'm getting lots of spam.