Thursday, January 31, 2013

182 Days

Today is Bryce's half birthday. It's been 182 days since the retirement of our old life. 182 days since the world as we knew it ended. 182 days since we took health and 'normalcy' for granted. We are so blessed that both of our boys are so healthy. With Connor, I took that health for granted. I was thankful, sure, but I guess I just assumed he would be healthy. With Bryce, I fully realize how blessed we are. Many babies born with Down syndrome are not so lucky. Many would have been through a heart surgery or two in those 182 days. Many would have had abdominal surgery by now. Why was our son spared those health issues?There is a certain amount of guilt that comes along with that. It is one of the things that holds me back from reaching out to other families of children with Downs. I don't even know what we'd talk about, because so far we have had it so easy.

        That being said, now that Bryce is six months old, there are areas where I'm starting to notice a delay. Around Christmastime, we really starting noticing that Bryce had a strong preference for looking to the right. It became really obvious the more we had him sitting upright. Because he started baby food, I thought I'd try the Bumbo seat to see how he'd do. He has always had head control issues, but his neck had been getting stronger. What I saw when I put him in that Bumbo was alarming. He was leaning so far to the right. His head, neck, shoulders, everything was being pulled down to the right. We decided we really needed to get him checked out by a physical therapist again. They pretty much diagnosed him with Torticollis over the phone. It basically just means that his muscles on the right side are tighter than those on the left, causing him to tense on that side. Although this is a fairly common with all babies, I'm sure Bryce's low muscle tone didn't help. Along with Torticollis often comes a flat spot on the head (from always going to one side). Bryce's flat spot is moderate, and we will talk to his doctor about it at his six month check up. They will probably do a 360 degree scan of his head, and if it's bad enough he'll need to wear a helmet for awhile. I'm hoping we can avoid that by getting this under control soon, but we'll see. He's now attending physical therapy one day a week, and there are a few excercises and changes we are doing at home.

       Because it's weighed down to the right, Bryce still struggles to hold his head up. I have noticed just in the past few days that he seems to be getting bored with doing the same old things all the time. It's as if other areas of his development are exceeding his physical capabilities and I feel so bad. I put him in a jumper seat the other day and he was so exctied to spin the dials/play with the toys, but he just slowly slumped over. It was heartbreaking. I hope this physical therapy works quickly so we can get that head steadier. He is so good at grabbing toys and putting them in his mouth. He rolls around, and also wants to start scooting on his tummy, but always face plants. Once he gets his neck strength built up, he'll probably be scooting around the house! I'm reminding myself to appreciate having a fairly immobile baby, 'cause life changes quickly once they start motoring around!

         The other big thing on our minds lately is school. It's preschool registration time, and Connor will be going in the fall. Even though he'll have two years of preschool first, I have been thinking a lot about kindergarten. I always assumed my kids would go to Catholic school, because that is my comfort zone. It's where I went to school and where I have always taught. Now I don't know what we'll do. I want to have an idea of where Bryce will be better off before we make a decision for Connor. Right now we don't have any way of knowing how high functioning he'll be and/or if Catholic schools will be equipped/willing to take him. Then there are the social things to consider...will he be better off in a smaller, Christian environment or one with a more diverse population (and possibly even other kids like him)? It's been weighing so heavily on mind even though there is no way (or reason) to make the decision right now.

    This turned into a pretty heavy post (I'm having a sad day today), but it really should be a celebration of this sweet baby's half birthday. We are so blessed to have such an easy, happy, healthy baby who has already taught us so much. In just 182 days I have gained so much knowledge and changed many things about my way of thinking. Even though there are still days that I wonder "why us?", and even though I know there will be many challenges to face, I don't think I would take Bryce's Down syndrome away. It's part of who he is--part of every cell in his sweet little body. There will be things he can't do because of it, but there will also be opportunities that open up for all of us because of it. He is a blessing just like his big brother. Here are a few recent pictures of our smiley, bright-eyed little guy.


Photo: Look at those big brown eyes! Love this baby.

Happy Half Birthdy, Brycey Boy! We love you!


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