Friday, January 9, 2009

Ashley has Achondroplasia -First Thoughts August 2007

August 15th 2007

We were super excited (literally jumping up and down) when we found out we were pregnant again. Lots of morning sickness (about 5 months), even worse than with my twins. We had a very cautious doctor who had me checked for various things because I had my twins at 27 weeks. We had ultrasounds every other week, to make sure I wasn't going to have this baby early as well.

Well, my body started contractions at 4 months and they put me in the hospital. They said our little Ashley wasn't growing right and they might have to take her early. After a few days that time, they couldn't figure out why she was so small, because everything was as it was supposed to be. At our 26th week ultrasound the doctor noted the growth in her femur as being shorter than average.

You see, when they get the baby's weight in-utero, they go by their length of femur (thigh) bone, and their head & tummy circumference. They put that little formula into the computer and it pops out a weight. Everything was "normal" except her femur length, so at 32 weeks gestation they told us she could have a type of skeletal dysplasia.

It wasn't long before we had tons of info on Skeletal Dysplasia, and the 200 different types that she could have. By the next visit they checked her weight again and at 34 weeks, they said it was definite that she had a form of dwarfism. No big shock, we were ready and informed on the possibilities that could arise in the future. The only thing about that visit that bothered me was when the doctor told us that "by Law!!!" she had to inform us of the 3 different abortion clinics in the area that would perform a late term abortion!!!!! Can you believe it, I was so angry. I had read about this being an option, and people that abort their fetuses because of the unknown, but we would never consider taking the life of one of God's special bundles.

You see, God promised us, he would never put more on us that we can bear, and if he thinks that we can handle a beautiful child that is extra special, then we consider it a compliment of the highest! Oh, yeah, and Tuesday was the day the doctor made us that offer, She was born that Saturday:) A perfect little 4 lb 13 oz gift from God.

Now, can I say that the first time they told us something wasn't "right" when she was still a fetus we weren't scared and full of questions, NO. You wouldn't be normal if there wasn't fear and concern, but doing research and faith kept our sanity, and now we're more blessed than ever.

We know there are things we have to look out for. She is 5 1/2 months old now, and we have had her checked for hydrocephalus, and siezure disorders, both of which she does not have. She is starting to develop kyphosis (hunchback), in-spite of our keeping her well supported, but next month she will see a specialist for that to help prevent any long term effects.

She just started to roll from tummy to back 2 weeks ago and is still a bit of a "bobble head." These are normal to a child with Achondroplasia, the motor developments can be delayed due to the difference in their bones, but socially, she is right on target as an average statured child. She started smiling on cue just before she was 2 months old, and is always full of smiles and giggles now. She has recently started grabbing at things that she wants as well, and everything goes right to her mouth:) She is just starting to lift herself up a bit when she is on her tummy too.

The LPA has a book called "Raising a child with Dwarfism" which we found to be an excellent resource. There is a story about Holland, that has proved to be a perfect picture of the feelings new parents may have. I would suggest this to any new parent who is opening this new door in their lives.

As far as her older sisters and everyone else in the family, there was a little shock at first, followed with open arms and lots of questions. For you new parents that are just learning about your little one having a form of dwarfism, remember, how you feel about it and present it to others is how they will feel about it. Personally, we feel it's really cool that we have a special child and we won the baby lottery:)

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