Tuesday, February 23, 2010

Achondroplasia FAQ

Lately I have had an unusual amount of emails from mothers with new babies that have been diagnosed with Achondroplasia. So I thought maybe I'd address a few questions here, so I could have a reference link for parents. I will do my best to answer questions, but keep in mind, I've been on both sides of the spectrum and truthfully, it's a lot easier to be little, than to raise a little baby. So most of my answers come from what I consider the absolute best source...my mom! :)

1. How old was Sawyer when he was diagnosed? How old was I?
Sawyer was two days old and I was 18 months old. From what I understand they should be able to diagnose the child during their ultrasound, but that doesn't always happen.

2. How should I prepare to raise a child with Achondroplasia?
I'm not entirely sure. I seem to be flying by the seat of my pants. I would recommend buying step stools and the shortest potty chair you can find. My mom gave me some GREAT advice. She said when I was growing up, she would get down at my level and walk around the house, seeing what I could and could not reach and then she'd find a way to adapt that for me. My closet rods were lower, step stools everywhere, and then they still have a drawer in their kitchen with dishes for me. Being that now their cupboards are built custom for them (which is high).

3. Are you the only little person in your family?
Yes. Why? I don't know. A friend of mine once said, "You're the happy meal in a super-sized family." I'll go with that answer. I have five brothers all above 6'5" and one sister who's 5'8" and my parents are the same. There is no history in the Keller family of Achondroplasia. But now that I have it, it can be passed on and has been passed on to my son Sawyer.

4. Do you worry about the health risks of Achondroplasia?
I did for a few months. I made myself sick and completely depressed. But then I decided that I could beat myself up for passing this on or I could buck up and deal with it. I mean really, things could be worse and quite frankly there's no other option. If there are going to be difficulties along the way, we can't prevent them, we can just handle them. And honestly, Ruger has been the expensive child...Sawyer is healthy and strong and has outgrown any physical trial that has come his way.

5. What are your thoughts on the limb lengthening procedure?
I talked about this a lot on my other blog, but I haven't so much on this one. I support anyone who decides to go through with it. I had my legs lengthened at 14 (not the typical age) and it was the best decision I could have ever made. I am stronger, I can drive a car, reach a faucet, my metabolism has even increased because of it, I'm much more active than I ever would have been. I have had a few follow up knee operations, but there are cons to every decision we make. And I do not believe that it is a cosmetic procedure. Six inches gained has in no way made me a supermodel.

6. Will you have Sawyer's legs lengethened?
Jason and I have decided that when Sawyer turns eight we will begin discussing the procedure with him and we will help him weigh his options and let him decide. The same goes for Ruger and his hearing. If there were ever a procedure that would help him hear completely, then we would weigh out all of the options with him.

7. And this question came up last weekend, I thought it was cute. Do you have to do a lot of hemming?
I hem some of my clothes, but most of the time my pants look like this:

Hopefully, I'll be better with Sawyer!
My personal advice to any new mother dealing with this. I believe that these little babies are born with Spirits much stronger than ours. They are given all of the personality traits that they will need to get through the trials that lie ahead for them. And when dealing with others remember that more often than not people are simply curious and they mean no harm. For those who do mean harm...their day will come.


Lee and Roni Poston said...

Amen sister! Totally spot on about the "having enough personality" thing. Poor Sawyer will have double what he needs though, being "little" and having you for his mother :) We love you Tiffany big or little!!

Caden and Mommy said...

Well Said Sister :0)

Betsy said...

The happy meal comment has made my day. That is hilarious.

Tiff, you are on the very top of my top 10 list of amazing people I know and love. I hope you know that. You amaze me. (And I really am sewing today. . .promise!)

alicia said...

I love your last little bit of advice at the end, so true. It is simply a miracle and a blessing that we even get to raise our precious babies! love ya Tiff!

Alex said...

great post!

Danielle said...

Great post Tiffany - and you made me laugh. that's how I hemmed all of Peyton's pants this year :) Much quicker and easier, and looks stylish too!

Melda said...

You are amazing! That is why everyone that knows you loves you! and Sawyer!

shareen said...

So happy you posted the FAQ! There are so many who can benefit from your experiences. You have always been my gift from heaven and my friend. I love you so much!!!!!!!!

Destini said...

I'm dealing with one of those strong SPIRITS right now...lol! I'm not sure there's a room big enough to handle Trace and Sawyer combined - their personalities, or their cuteness ;)

Greene Family said...

Great post! So true about their strong spirits and personalities! :) Love the happy meal comment too!

Kim said...

You rock! I think this is a great post and I am going to keep it in mind if anyone ever asks some questions (a new parent on POLP). You are the perfect mom for Sawyer and Ruger! I think your prespective is so refreshing and it helps to hear things from a person who has experienced it first hand. I have made it no secret that there is a good chance Preston will have ELL at some point so I thank you for writing about your experience.

Chelsea and Cody said...

I am so glad that you did this post. I learned alot in a little amount of reading! You have some great advice...keep it coming...I could use it!