Monday, August 9, 2010

Filling everyone in....

I realize I keep a family blog to give updates about Cade's development and our family. But I think its time I mention a very important part of our lives that will affect us forever.

At 36wk pregnant we learned that Cade had ACC. What is ACC you may ask: Agenesis of the Corpus Callosum:

www.ninds.nih.gov/disorders/agenesis/agenesis.htm

The information on ACC is both overwhelming, broad and scary. From what we have learned from Cade's Dr's there are people all over this planet that have ACC and don't even know it, and there are some that have ACC and lead a challenging life. From the day we learned about Cade's ACC we were told we'd have to "wait and see how it affected him." I have to be honest in saying it was the scariest day of my life and I wasn't sure I was cut out for this!

When you are pregnant expecting your first child you have so many expectations of the perfect birth, the perfect health for your child and the perfect childhood. So when you learn that all that could change and not even a Dr can give you a definitive answer its frightening. When I envisioned starting a family, I never imagined my child could have a special need, and I never knew we could handle such. But looking back a year later, I see now, we knew no different. He was our 1st and only child at this point, and in our eyes he is doing everything we would want him to do. And he does it perfectly, the Cade way.

Since the day he was born it wasn't your typical birth. I feel as if everyone didn't know what to expect so they prepared for the worst. We had our OB along with a neonatologist present "just in case." We were housed in a tiny room right near the NICU "just in case." But you know what the birth went as it should, perfectly with no complications. I think Cade surprised the team of Dr's. He had an MRI, extensive eye test from the opthamologist just a few days after birth. The MRI confirmed his diagnosis and the eye exam ensured his optic nerves were in place correctly. You see when a portion of the brain is missing a lot of other things inside the brain can be affected also. The optice nerves and the pituitary gland which affects growth. All of which on Cade is "normal" so far. I say so far bc his brain is developing at such a rapid rate as a child it could change at any time and they want to be on top of it! We keep a watch on his optic nerves for any changes which could cause wondering eyes or a "lazy eye." He goes to Dr. Arnold his Opthamologist every 6 mo.

Also every 6 mo we make the trek down to Children's Hospital in Denver, to see Dr. Parson's. She is amazingly brillant, as you would imagine being a pediatric neurologist. I look forward to her appts as well as fear them. I say look forward to them bc more than not Cade has been right on track and she has been so impressed with him. I say "fear" bc I see so many kids there that are less fortunate than Cade who have more severe problems and seeing that sort of puts things into perspective. I feel awful for saying that but its the truth. I think Cade will continue to see his neurologist for many years also bc as he gets older they will start more testing and perhaps future MRI's to trace his brain development.

So back to ACC, how has this affected Cade and our lives thus far. Well since 6 weeks old Cade has sought therapy from an OT, named Kim. She has been a great support in encouraging not only Cade but us as his parents also. She will be apart of our lives for many years. We couldn't imagine getting to this point w/out her support. She provides us as parents guidance on how to play with Cade to encourage movement and growth. And boy does she know her stuff! Cade learned to sit and do most of his other "milestones" pretty much right on track.

Kim reminds us 2x per month how much Cade is changing and doing everything he should be. It wasn't until his 1st bday that he wasn't crawling and we realized he could be falling behind just a tad.

So we sought the attention of a PT named Jessica. Although we've only met with her twice so far and will continue to do every other week as well we found her services to be very encouraging also. BC you know what, our lil man has learned to crawl! Now he's not all over the place yet but he's curious and I know he will be soon! But the point is he is crawling! He is doing everything he should be. He can pull to stand sometimes solo, othertimes with a lil help. He's slowly starting to "cruise" the coffee table and gain confidence in stepping and moving around too. He definitley doesn't have his balance 100% to do any walking by himself but he's getting there.


I guess I felt the desire to fill everyone in bc as I post updates on his development you may notice things here and there may be a little delayed and wonder, "hmm...." I didn't want anyone to think that we were not on top of this, and if anything to bring more awareness to ACC. Its not a very common thing. And maybe the more people know the more sensitive they may be to thinking what is "normal" vs what is just "every baby developing at their own pace" bc you may not know what is going on with every baby you encounter.

I read this update from a friend who's son also has ACC and it was very inspiring to me as they recently visited the National Organization for Disorders of the corpus callosum. Her summary of her exprience there was

"a mix of realism and hope...first let go of "normal" by accepting and acknowleding that S's brain is functioning differently. Secondly, although that is true, his brain is amazing and capable or learning and growing and rerouting pathways to help him make connections...so there is truly nothing impossible for S"
I loved reading her update and we too hope to go to the yearly conference held in CA next year. We want to reach out to other families out there and become more aware of what we can do to help our child develop. Already to date I have met several families who's child has ACC and its been so encouraging for me to read their stories and learn from them.

I haven't wanted to come forward with all of this until now, as I didn't want anyone judging or giving Cade a crutch, I just wanted everyone in our lives to treat him "normal." I guess its come to a point that I felt comfortable coming forward with Cade's challenge as it affects us all and we will continue to do anything and everything for him always.
I hope that by reading this update you can take away a better understanding of ACC and children everyday who may appear "normal" but could be dealing with a much broader issue. Treat everyone with kindness, love and no judgement. If you have any questions about Cade or ACC please feel free to reach out to me I am happy to answer it all. There are many resources out there that cover ACC, one of my favs is angels around the world ACC, just google it.

As a side note also I wanted you all to know there are varying cases of ACC. Cade has complete ACC vs. partial ACC. Partial means the CC formed but only very slightly. Cade's CC is missing completely. Cade also has an isolated issue meaning nothing specifically caused this. His chromosomes and everything are all normal but its more a fluke that his CC didn't develop in- utero. From what we understand also that isolated ACC can tend to have less symptoms or better outcomes vs the other. "Many people who have ACC as an isolated condition have no symptoms at all, and some may only experience mild difficulties with skills that require matching visual patterns." The people who suffer from more severe symptoms tend to have other chromosomal abnormalties or brain malformations and genetic syndromes, all of which Cade does not have.

5 comments:

  1. Cade is lucky to have you and Evan for parents! Thank you for feeling comfortable enough to share with us Carri! Way to go Cade--keep up the great work buddy!

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  2. What a great post Carri...thank you for sharing this with us. As others have said, you and Evan are great parents and Cade is so lucky....but I will say that you are pretty darn lucky to have him too! What an amazing little guy...and he is a heart breaker!

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  3. Carri,
    I am so proud of you and the amazing mother that you are to Cade. I know that things have not been easy all the time but I want you to know how much I admire and respect you as a mother and hope that I can be half the mother you have been to Cade.

    Love you!!

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  4. Julie (Lily Anne's mom)August 10, 2010 at 5:40 PM

    I'm proud of you for sharing with your family and friends. I know it was a hard decision to make (as we have also been there). Beautiful post! And, as someone in your shoes, it is actually easier to be "out" when it comes to ACC!!

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  5. Hello,
    My name is Kelly and I a mama to a sweet 7 month old girl with Isolated Complete ACC. I found your blog through Angels Around the World. I just wanted to reach out and say that I am so happy your sweet boy is doing so well. He is precious! Your story is VERY similar to ours. We found out when I was 27 weeks pregnant. Our daughter, (Violet) like your son is doing very well. We work with Early Intervention weekly and she is right on track developmentally. You are welcome to check out our blog that we keep about our family. Violet has a big sister Mahaela that will be 2 next week.

    Warmly,
    Kelly

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