Monday, February 15, 2010

A Brand New Year


So sorry for the delay in posting any new messages. The Holidays came and went, Valentines Day has now passed, its crazy how quickly time flies and even more crazy how much Chase has changed during this time! Where to begin? Well, for one. Chase has begun to walk! We got a glimpse of it, on fact, on Christmas day! He spent the next few weeks trying to figure it out. He's funny, you can see his expression change too. He gets all serious and looks very focused and motivated at the same time. He had the same look when he first realized how fun it was, and how much of a challenge it was, to climb up and down the stairs! So....the past few weeks he's really perfected it and is walking all around the house. He still likes to crawl, so he goes back and forth between the two. He also is a monster because he really enjoys getting up on the stove handle bars and hangs backwards. You can tell where I'm going with this!

Speaking of being a monster....his new thing is making "sassy" noises with his lips (much like that of a horse expressing himself). He spits out food and he does it sometimes to be spiteful (or so it seems)! We're trying timeouts now to try and refocus him. We just read that saying "no" before actually age 3 actually hinders development. Anyone disagree? I'll bet there are a few out there, its harder than it sounds, especially during times like these.....

What else? Chase continues to be a challenge with eating. His primary diet is Pediasure (Vanilla and Strawberry are his favs) and whatever else he will take that day. He eats baby food really well on occasion and seems to enjoy foods his daddy likes such as: meatballs, cheese, bologna, sausage, and all that heart friendly food! We just keep trying new things each week and I must say that Katie has been just wonderful as the primary feeder. Some days my patience would run thin, but I give her all the credit in the world for sticking with it and trying new ways to feed him!


We have a few follow-up appointments with Chase's ENT surgeon, Dr. Wei and with his current pediatrician, Dr Gratney next week, so we are hopeful all is well in their eyes. Chase has been doing great without the trach and his breathing through his nose appears to have improved too. He still has what looks like a belly button where the trach hole was, so we may have to have a cosmetic surgery to pretty that up at one point, we'll know more about that later......Hearing aids are still being worn, well as long as he will tolerate them. Our day nurse, Marjean, seems to be pretty diligent with Chase wearing them, so that puts our mind a little more at ease.

I'm not one for many words, so I'll keep this short. I do want to thank all of our family friends for all their support last year and early this year. You continue to amaze me with your love and support! Here's a few pics over the past few months that I hope you'll enjoy! Hopefully I figured out how to post pics and videos! I'll try my best, but our master blogger (katie) might have to add a few more in the next few days!


10 comments:

Sarah said...

Well, where do I begin. This blog is truly amazing. I just took the last hour and read the entire thing.
My dad sent me a link to the blog. He said he was at a recent reunion and met up with Chase's grandmother and she told him about your son's beautiful story.
All I can say is, wow. You are truly inspiring. After reading your words I can say that you are amazing. It's wonderful to see how much Chase has grown and gained his strength in life.
I really wasn't planning on reading every post, but when I saw that Chase had the same birthday as my son, Christopher, I felt some sort of connection.
That's not to say I know anything about what you've been through. But still, it seemed amazing to me that two boys were born on the same day, both in Missouri and had two completely different first two years.
Anyway, thank you again for sharing your story. It was definitely inspirational. If you ever have the time, we'd love for you to come check out our blog.
-Sarah
www.christopherdecker.net

Craig & Evelyn said...

Hi I want to contact you, my name is EVELYN, our son, Kaine Also has CDXP1, We live in NEW ZEALAND and have been looking for others with this condition. Our Son Kaine, is 2 and bit, born 01.03.08, just a little older than Chase.. PLEASE email me @ sutherlandfamily@clear.net.nz

Anonymous said...

I don't know if you still check this blog, but we're expecting a baby boy in April who has a prenatal diagnosis of CDPX1. Reading your blog and seeing how happy Chase looks in the pictures has given me a lot of hope. We live in Central California and will be getting our medical care at Stanford. If you do check this blog, I would love to hear from you, my email is jennymclelland (at) mac.com.

Office antics said...

Hello,

My name is Danny, our son, Maxwell Also has CDPX1. We live in Canada and would love to make contact with others with his rare condition. Maxwell is almost 2. Email us at ddowns1@telusplanet.net

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