We're All Different, Doesn't That Make Us the Same?

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 Down syndrome was named after the person who first documented that he recognized the characteristics associated with the syndrome.  Many parents of children with Ds believe it should be called "Up" syndrome instead.  ;-)

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However, just because our babies/children are often smiley does not mean they are ALWAYS happy.  

People with Ds have a wide range of emotions, just like anyone else!

Health Stuff

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Kheaven had an appointment with a pediatric neurologist last Thursday.  He's had some head shaking since about four months of age.  Sometimes it seems this is directly related to his Nystagmus.(wiggly eyes)  It has never interfered with how he does things, at not to my knowledge.  He had an EEG done a while back but the results came back that it wasn't seizure related.  Because the head shaking has changed from shaking no, to nodding yes, to wobbling like a bobble head they decided to do another EEG.  It also came back negative for seizures.  So, thankfully, we don't need seizure medication.  I have read that it can take a typically vibrant child and sort of make them zone out.


Anyway, since it's not related to seizures and since he has Nystagmus the neurologist gave me the following scenarios...
*It's a tick and nothing more.
*It's "Spasmus Nutans" which can also just be a tick that goes away by about age three.
*It's "Spasmus Nutans" caused by a cyst or tumor in the mid-line of his brain.


I'm not so excited about that last scenario, though going into the appointment I knew the reason we were getting the shaking checked up on is because it can be a sign of a tumor.


The plan is, Kheaven is going to have an MRI done on his brain.  Since he's a little, wiggly baby he needs to be sedated for it.  After the MRI we'll have another appointment, the same day, with the neurologist and he'll tell me what's going on.

I am praying for the best.  I hope that anyone reading this will say a prayer as well.

October Is...

Down Syndrome Awareness Month

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So...  It was ONE YEAR ago that I found out my new baby had an extra chromosome.

Down Syndrome IS a genetic condition caused by a chromosomal abnormality. Atypical cell development results in 47 chromosomes instead of the usual 46 chromosomes. As a result, there is some degree of cognitive disability and other developmental delays.

For people who don't know much or anything about Down syndrome it may seem scary at first.  New parents and family members aren't always excited about the word "delay" being associated with their child.  It's not so bad though!

Throughout the past year I have been very blessed that Kheaven's "delays" have been slight, and in some cases he was not delayed at all!

Kheaven amazed me at 2.5 weeks when he rolled over for the first time.

He astounded me when at three months he mimicked sever words and even a sentence, "I love you."

He started to "army" crawl right "on time" as well.

Kheaven just turned one a little over a week ago and has only been sitting for two months.

He just began to pull himself to stand and he has only done it a few times.

He has no teeth.

:)

The time frame isn't so important.  The drive I have witnessed in him, the drive I feel in myself and see in other families, who are part of the special needs community and who are not, that is what matters!

I hope over the next 29 days that I can blog about something you don't know.  I hope I can shed light on something you don't understand.  If you do know and understand this all, I guess this will be an opportunity to get to know me a little better.

Happy Birthday To My Baby Love

~Last Day Under One Year Old~

**Celebrating ONE YEAR!**

It has been one AMAZING year with sweet Kheaven Zane!

Looking forward to year two!!

I Heart Faces: Thy Trusty Old Probe

To see more things that go "vroom" go to I Heart Faces!

Adoption: Maeve and Money Matters

Her birthday is January 6, 2010. She has six fingers!

I love her.

If I could I would get her RIGHT NOW!

"I was looking up ways to raise money for adoption and found this:

We didn't have to finance our adoption: We adopted two children through the state foster care system, and received foster care payments, WIC, mileage reimbursement, clothing vouchers, and day care and medical services while the children were in our care. The state also paid our attorney fees. We will receive a monthly stipend and medical benefits until the children are 18. There are so many children who need parents, and thanks to adoption support programs, finances don't have to be a barrier."
Maeve MacSteves

Nothing like having a name/thought/feeling jump out at you. I've never even seen the name before yesterday.

Here's a list of some of the sites I'm looking at right now...

The Adoption Guide

Unique Ways to Raise Money for Adoption

Raising Money for Adoption

How to Raise Money for Your Adoption

How to Raise Money to Adopt a Child

Adoption: A Thought, A Yearning

I have always wanted to adopt. I have dreamed about it, but not in detail. After my youngest son was born with Down syndrome I became a part of a large online community, through which I was directed to Reece's Rainbow.

I don't think I ever contemplated adopting a child with special needs. I had a big enough fear about giving birth to a child with special needs, so willingly taking that on wasn't on my list of things to do. After looking through Reece's Rainbow the desire I have become increasingly aware of my desire to adopt. Having my baby made me realize I can handle a child with special needs. Not just handle though, the word makes me laugh. I love and cherish my son! He is amazing and I know another little one, with Down syndrome or without would be a blessing.

Financially I am not in a place to adopt right now. Career-wise, we are just starting to be on the right path. We live in a two bedroom apartment with five people, so our housing situation is not suitable for another family member yet. We are starting our journey though. I have been in contact with and am following blogs of people who are going through the adoption process. I am looking up and plotting out ways to save money, whether it's raising it or just not spending what we already have.

I feel determined, and I want to profess this publicly so I stay on course. I want to be held accountable. This is my dream. If there was ever a calling in my life, this is it. The feeling runs deep within me, it overtakes me. Whoever the baby or babies are that we're going to adopt, I love them, I know I do. I can't wait to meet them and to hold them... They might not even be born yet, but I am here for them, getting ready for them.

This is my family's journey. One of our many adventures!