Monday, January 11, 2010

Marathon Update!

Hello everyone,
I think it's about time for an update as we have a lot to share! We have completed our first session at the conductive learning center. The class lasted 3 weeks and went rather quickly. During the course of the class Carson improved in many areas. He gained alot more strength and although he doesn't sit completely steady he is getting closer. He also has gained speed with his crawling which is exciting to see. His biggest improvement in my opinion is his ability to stand with more confidence and his ability to steady his body against a surface using his arms and hands. Today I was reminded by this new milestone when I was preparing some food for him in the kitchen. Instead of laying him on the floor, I helped him into a standing position. As I prepared his lunch he stood holding onto a drawer for the entire time! Not only did he stand without falling, but he enjoyed it as well. We have worked incredibly hard for this blessing. It sure makes you thankful in a new way for these milestones!
I wish I had only positive updates, but unfortunately we were recently discouraged to learn that it was time to catheterize Carson. We were hoping that we wouldn't have to deal with this until a few years from now, but Carson's hydronephrosis (fluid in the kidneys) has gotten worse so we're hoping that cathing will help. It was overwhelming at first, but now it is part of our routine. The hardest part, in fact, is that Carson is always full of energy and cannot lay still during the cathing. This makes it tricky, but it is always fun to see his legs kicking! One of the risks with cathing is the possibility of UTI's and today, sadly, we learned that Carson has his first infection. Since we caught it early we're not anticipating fevers so please keep him in your prayers!
Friday we had another MRI. Somehow the hospital expects you to arrive 2 hours before the procedure to sit around with a hungry, crabby baby. Nate and I were dreading the day, but Carson did surprisingly well! I know alot of you were praying for him that morning, thank you! Since the MRI was 2 hours he had to be sedated. He was upset and out of sorts when he woke up, but he quickly recovered and was his normal self again in no time.
Today I received the tentative results. We're excited to report that there has been no change in his chiari, hydrocephalus and syrnix since his initial MRI in August! This is very good news. We'll talk more in depth about it with his neurosurgeon in a few weeks. I hope he is pleased with all he finds.
Lately I have felt some new anxiety over a new specialist we will soon be adding to Carson's list. Since Carson is not progressing well with his upper body strengthening we have decided that it is time to see a neurologist. Hopefully we'll get some answers as to why he is lacking strength. I am nervous and eager, please pray that we'll solve this mystery and overcome whatever the new challenge is!
And now for the biggest news: Carson turned 1 last week! I blinked and suddenly a year went by. The day was more emotional than I thought it would be. I cannot believe all that we have been through in a years time. We are so thankful for Carson and all that he is teaching us. And we are grateful to God because he has provided EVERYTHING we have needed. A year ago the thought of not only raising a baby, but a baby with special needs was stressful and overwhelming. I felt inadequate for the task (and still do!), but I am always reminded that God provides everything that we need (and in our case even more than what we need). He has given us the resources we need for Carson's medical issues, the finances we need to afford it all, the intellect to understand and react, and an awesome and supportive community filled with people who pray for us, encourage us, and even new friends who are going through the exact same thing.
Please continue to keep us in your prayers, we have been blessed by them.

4 comments:

Summers Family said...

Wow - so much going on! Happy birthday Carson. Congrats on the prolonged standing. That must have been such a special moment - one I look forward to having with our Annabelle. So glad all went well with the MRI and the preliminary findings. We will keep you all in our prayers as you move forward with the Neurologist. Sorry to read about the cathing but it sounds as if you guys are doing great.

Best of luck for a super 2010!

Nicole
Your Baby Center friend

Adrienne, Scott, Hanna and Hayden Trigg said...

Happy Birthday Carson!! Hayden and Carson seem so much a like and just a month apart in age. Hayden has not been progressing very much with upper body strength. His stander helps his legs, but his arms are still weak. We thought is was the syrix too that made him weak so we had the follow up MRI. The 2 hour wait is @#$%. We'll learn about it on Thurs. I will be interested to learn about the neurologist thoughts with Carson.

HennHouse said...

Wow--what an update!

Happy birthday to Carson! Our Esther-Faith just turned four... and you're right it feels like a blink and now she is a little person.

One thing that has helped us with the cathing is having Esther-Faith participate in any way she can. We've been cathing her for a couple of years now and I think she's not far from trying it on her own.

I'm looking forward to getting to know your family better!

Susan M. Nelson said...

At first I thought this meant you were preparing to run a marathon! (: Life is a marathon, isn't it? Thanks for the great update. We will continue to pray about the neurologist appointment.