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Monday, July 17, 2017

It's been awhile.....A long WHILE

It has been a very long time since I've last typed out a blog post. I would say it was because we have been busy but that is not even close to being true. I live a totally boring life style now! More laid back than ever. Now that Kadyn is older (10) our hospital visits are few and far between and mainly it has been for his seizures. Which have not been too bad lately. Forgive me for I did not go through my blog to see where I left off last but I do believe Kadyn was still on the Ketogenic diet. He is no longer on that diet. We decided to take him off the diet because after 6 years of being on the diet it was no longer as effective for him as it was in the beginning. So, we decided to take the medication route again. He has gotten bigger, and is much older now so we thought maybe medication would actually work. It does! This doesn't mean he is seizure free, given the amount of brain damage he has sustained with his conditions, I've come to realize that seizures are going to be a life long struggle for him, but the medication he is on (Vimpat) is helping him a lot. His seizures are months apart. About a year ago was his last bad seizure that I needed to call 911 for. Kadyn was in PICU for a couple days but since then the only time he has gone to the hospital is when seizure happens at school, and that is just policy. Kadyn also has a VNS now. (Not if that was mentioned in previous posts) but I believe that with the medication are the real reasons his seizure are better controlled now than they ever were. But Kadyn has not has any shunt issues in many years. He has had to same shunt now for.....7 years I believe.

Just recently we found out Kadyn was approved for Make a Wish and we have decided to go to the ocean for this Wish. Kadyn loves the water and I believe being about to "swim" in the ocean would be amazing for him. Thankfully Jeremy (my amazing fiance) and Kyle (who is going to be 4 next month!) are going with us! It's going to be an amazing 7 day trip! I can not wait until we can go in the spring!


Kadyn is in school still. He is doing the extended year program which means he can go through the summer. Which is wonderful because he gets to keep going to school, learn and do all of his therapies through out the summer. Kadyn really loves going to school, or maybe its just the bus ride he loves. I'm not really sure haha. 

Kadyn just had his tenth birthday party! He turned 10 July 2nd. Seriously double digits? This cant be real. Seems like just yesterday I was preparing to have you. Scared, not knowing what was going to happen. Will you be breathing? How bad will the hydrocephalus be. But here you are 10 years later just amazing as can be. Plus you're a big brother! I swore I wasnt going to have anymore, but Kyle completed our family. Then I introduced you to 3 more amazing boys and their amazing dad who fell in love with you! So not only did i find my best friend, I believe I found you your best friend Kadyn. 
Here's to many more years of this "boring" life style. I rather enjoy not having to rush to the ER all the time, and the many surgeries. I enjoy not having to put you through test after test. I enjoy all of our appointments being every 6mo to a year. Its just wonderful! 

3 comments:

Mary.W said...

It's wonderful to read that Kadyn is doing well. Can't believe it's been 10 years. Is the boys dad, Harvey still in their lives? Glad you and the boys are doing well, Thanks for the updated blog!!

Sanahk said...

So nice to hear from you I used to follow you and just thought about you tonight and here you are. The boys look fantastic ! Here's to your happy life ! Love from my family to yours xxxxxx

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