Our Final Results

Today it was confirmed that our 3 month old Mark, has Achondroplasia. As a fan of television the first time that I hear that word from our doctor I knew exactly what he was talking about. Yes, our son is going to be a “little person”. There is nothing that we can do about it. There is no cure, treatment (unless we want to put him through bone lengthening surgery, which is ridiculous, and unnecessary.) We don’t know how tall he will get, or how short he will end up being.

Being that Mark is still just a baby we don’t know how his legs and arms will grow or if he will need surgery in the future to help him walk. It really is just a mystery that we are taking one day at a time. I have been instructed by Mark’s neurologist that he isn’t to sit in anything with a sling back. He has to sit in things with hard backs. So, I have had to take down many of the things that are used for babies to sit in and find different ways to carry him around.

Kids with Achondroplasia are known to have larger heads. There bodies are so small that it accents their head. That is why he needs to have hard backed things so that his heavy head doesn’t crush his neck, and cause fluid to build up in his head.

The first year is going to be the hardest, there is a chance that children with Achondroplasia can die. So, that makes it very important to get Mark check out, and examined by the best doctors. We are working with doctors that make Bruce and I feel confident that we can get through this.

As of this moment in time if you look at Mark you can tell that his legs are shorter than the rest of him. However, according to the doctors he is a health baby growing the way that he should be for his condition.

106_0319 We have a long way to go but at least now we know what we are dealing with. There are worse things in the world that he could have been diagnosed with, but it is still heartbreaking to know that our little boy will stay little, and not be 6 foot tall like most of his family. However, he will always be loved, and there is no way that I am giving him back. 🙂

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5 comments

  1. Dear Samantha and Bruce,

    I am so thankful to read the good way you have received this knews. Mark is a precious son, and now more precious in this new way. No one was expecting this development, but now that you know this is Mark’s future, you will see new blessings on this new way.
    May God hold you in His care.
    Uncle Jerry

  2. Sam, I didn’t know a about this. From Mark’s pictures he looks like a darling and happy boy! I know what it’s like being faced with health issues for your kids. You are a strong woman and it sounds like you and Bruce have a strong relationship. You are going to be a fabulous mom to Mark! God Bless all of you.

  3. Dear Samantha,

    I´m very glad to know about Mark and you. Thank you for following our blog and Clara too. I´m replying to this particular post to give you “wings” for the future. Probably you read in our blog about the scientifical advances around achondroplasia (BMN-111 and Meclozine). Mark and Clara and all the other babies and chindren with achondroplasia will get a treatment in the next couple of years. I will keep reading our older posts ( about your facts and emotions). I leave you with an embrace and a kiss for the kids.
    Ines (Clara´s mom)

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