Wow!!! What A Story!!!

Wow what a story!

Tom Brokaw reports on the progress of snowboarder Kevin Pearce, a likely Olympic contender in the halfpipe before a December training run accident nearly took his life.

Go here and watch the video!

My Feelings On The "R" Word

This is a portion of a letter written to Sarah Palin asking her to take full advantage of her platform and become an advocate and educator for Down syndrome and all intellectual and physical disabilities. The reason I am sharing it is because I feel it truly explains why we as a society really need to think before we speak, and more specifically why we need to remove the "R" word (retarded) from our vocabulary. I've been trying for a couple weeks now to find the words to write on this issue. I think the letter to Sarah Palin written by leaders of the Oz Squad hit the nail on the head. So with their permission I'm sharing a portion of the letter. Please read on, change your thinking, and become a voice and help end the use of the "R" word....

Everybody knows and agrees that the word "retarded" used in a clinical setting defines a group of individuals as having limited cognitive abilities. In this respect, the term carries similar effects as racial or sexual orientation categorizations, in that it invokes a specific class of individuals with immutable characteristics.

But what not everybody seems to realize is that the current, common definitions of the word "retarded" as stupid, wrong, ineffective... the catch-all for anything that is annoyingly deficient, are steeped in our cultural view of people with mental retardation.

So whether one is using the term as an insult or to raise laughs through satire, the speaker is tapping into our common cultural understanding and belief that people with mental retardation are characterized by those negative definitions listed above. The speaker references a group of individuals defined solely by their cognitive limitations, denying them their individual personalities, and by extension their essential humanity. He agrees that this group is inferior and worthy of our scorn. This use of the word "retarded" has become so deeply ingrained in our society that the user probably doesn’t even realize that he has done this.

Many people, when called out on their use of the word, insist that they meant no harm to the mentally retarded community, that their use of the word had nothing to do with this minority group. These people must be made aware that there is no separating the insult/joke from its basis for understanding it.

No one believes that Rahm Emanuel or Rush Limbaugh thought that they were insulting those with true mental retardation when they called people whose ideas they objected to "retarded." But we do believe that both men were making the point that their targets' ideas were of so little merit that they deserve to be grouped with an undesirable category of people. Both the direct target of the insult, and the class of people it refers to, are indisputably demeaned by such a slur. You cannot have one without the other.

Put a simpler way, if people with mental retardation were generally well-respected and thought highly of, the insult "retarded" would not exist.

Having the government remove the term retarded from the books, and having the medical community change the diagnosis terminology to "a person with intellectual disabilities," is not enough to eradicate the insult. The public must be made aware of how the insult relates to and hurts an entire group of people. This is not a word police PC thing, rather it is a matter of common decency.

Some argue that the insult "retarded" will simply be replaced by another word that is just as hurtful to the intellectually disabled community. But just because some group of the population will always turn clinical or descriptive terms into epithets does not mean that we should condone it. Such a standard would condone the use of virtually any racial, ethnic, or sexual orientation slur.

Thanks for reading, and please help Spread the Word to End the "R" Word.

Watch this video, it shows just how overused that word is in our society, and how so many people don't think before they talk!

Test Results!!!

Friday we had our long awaited doctors appointment. We were due to find out the final blood results to the sequential screen and possibly have an amniocentesis. This final blood draw was equivalent to the normal prenatal quad screen (which has a reputation of not being very accurate), but in our case was right on with Kaitlyn. We were reassured that our results should be quite accurate since we were doing the sequential screen. This was a process of a blood draw at 12 weeks, and also an ultrasound at 12 weeks to measure the thickness of a certain "tube" at the back of the babies neck (this measurement is the most accurate when done at this stage in pregnancy), combined with more blood work and ultrasound done at 16 weeks. They combined all the "data" and we were given our results.

Everything came back "normal." Great actually!!! We were given a 1/10,000 for Trisomy 18, Trisomy 21 (Down syndrome), and a 1/6,000 for spinal bifida. These are the best results anyone can get. When I was pregnant with Kaitlyn our results came back 1/80 for Down syndrome, later we had an amniocentesis and Ds was confirmed.

Naturally we are thrilled to say the least! We had an amazing ultrasound. It is crazy how fast they develop. The next option for us was an amniocentesis. It has been a diagnostic test we have considered all along, but with such great numbers we opted against the procedure, phew!!! Oh how I was dreading having that done again! Our doctor agreed with our decision reminding us that although rare there is still a chance of the procedure causing a miscarriage. We are comfortable with our decision and are sleeping a little better at night now.

Back to the ultrasound. I am only 16 weeks and knew the chance of being able to tell the gender of this little bundle was slim. In the beginning the tech couldn't tell, but much to our surprise the baby changed position at the end and reveled very clearly the sex....it's a BOY!

Oh my another boy, we are thrilled!!! I was sure it was a girl, what do I know?! We had gotten rid of everything boy and transformed the nursery into a princess palace for little Katie. Even the yellow and green is gone! We are cracking up at ourselves, of course that is how it would happen!

It's a great weekend at the Ross house!

An All Around Update

On a day to day basis things have been pretty quiet around here, but when you look at the last weeks all put together I think I have come up with enough for a post. So here are a few updates...

My Mom...

Back in November my Mom was diagnosed with Bone Lymphoma. The cancer was pretty aggressive, when they found it it was already in both thighs and her ribs. She began chemotherapy right away. The plan for treatment was 6- 3 week rounds of chemo. The doctor seemed confident that she could "kill" the cancer but said she had to treat it aggressively, and that she did. My Mom is half way done. The chemo has been tough to say the least, she's been hospitalized twice, and the doctor has scaled back on the strength of her treatments each time. My Mom is a petite lady, they could only give her as much as her body could handle. After the third treatment it was decided that they would give her a break and let her regain some of her strength and some of the weight she's lost. This ended up being just what she needed. She was able to put on some weight, get her appetite back, and start feeling better. She went this morning to start her 4th treatment. Last week during her "break" she had a PET scan done to look for the cancer. And with a huge "sigh" I can tell you she had a clean scan, no cancer seen! Thank God! All the horror of the last months is paying off. Thank you to everyone for all your prayers! They worked for Kaitlyn and now they are working for my Mom. She will continue her treatments, but as of now things look good!

Brady and Bryce...

Brady is our 5 year old. The two boys are the best of friends but are polar opposites of each other. Brady is sensitive, shy and quiet in public, but at home he keeps us in stitches. His new found sense of humor is something else. He is so goofy. He's bossy at home and SHY at school. For some reason he really has a hard time opening up at school. It is so hard to watch. We try so hard to give him the tools (words) to be more CONFIDENT! But none the less...he loves school! He is a bright little boy, he learns everything they teach him and more. He's writing sentences, and starting to read, he's way above where he needs to be academically. We are very proud of him, but at the same time sad that he lacks confidence with his peers. His teacher reassures us he is making progress. His shyness baffles us because at home and around friends and family he's so different. He is such a comedian, and is working on becoming a magician, and he LOVES to draw and write. It is so fun to watch him grow into this next stage of boyhood. I love this little man.

Bryce is our 3 almost 4 year old. He and his brother are 16 months apart. He goes to preschool two mornings a week. We both needed this this year. It seems to be just what he needs. He enjoys being with me on his off days and misses his brother terribly when he's at school. Bryce is so different then Brady, they compliment each other well. Bryce is outgoing, silly, but emotional. When I say emotional I say it in all sense of the word. You never have to guess what he is feeling. He's a lover, Mommy's little boy. He tends to be the patient child, but also gets grumpy, angry, frustrated, and he speaks his mind :) This is his best and worst quality. He has grown up so much in the last months. He too is hilarious. He loves music, dancing, and his guitar! He's become quite the entertainer. What melts my heart the most though is the special spot in his heart he has for his baby sister. He's had this since the day she came home. The two of them are going to have something special. He is able to make her smile like no other! I love that little boy.

Kaitlyn...

Can you believe she is 6 months old already! The last months are such a blur. I watch her "Heart Story" movie that I made and lived and feel like I'm watching someone elses life. It is so crazy. The scar on her chest fades daily, she's doing great!

At her last wellness check she weighed in at 13lbs 10ozs. She is gaining and growing wonderfully. She still seems like such a little peanut though. After surgery we learned that she was aspirating. She had such a problem with projectile vomiting the weeks before surgery and chronic congestion. We had her scheduled for a swallow study before surgery but with her surgery date getting moved up it didn't get done until after surgery. The swallow study confirmed what I had thought, she was aspirating! Luckily it wasn't bad enough where we had to thicken any of her formula, instead we had to keep her on a very slow flow nipple and feed her sitting upright. Since surgery we had a follow up swallow study and she did much better. No more aspirating. She also had a 6 month hearing screen. It was recommended since hearing problems can be common in children with Down syndrome. She passed it fine, and we will follow up again at 12 months. Developmentally she is doing new things constantly and getting stronger by the day. An Occupational therapist comes to work with her every week. She is rolling some from her back to her belly, she is reaching and grasping at things. Her muscles in her core and legs have gotten so much stronger. We've started her on cereal and veggies. It took time and patience but she is learning to eat from a spoon. She loves dinner time! She makes each day so much better!

Baby #4...

I can't believe I am 16 weeks pregnant already. Having a busy household make the time fly for sure. Yesterday I had more blood taken for the second part of the sequential screen (We are testing for Trisomy 21 and 18). We should have the results Friday. Friday I am scheduled to have an amniocentesis, I go back and forth daily about whether or not I will have it done. I had the procedure done with Kaitlyn, I hate it, it doesn't hurt, its just my nerves, and the idea of the whole thing, if I want diagnostic results I need to have it done. We will see.

My morning sickness is almost gone. It creeps up on me from time to time. Right now my greatest problem is headaches. They say they should get better after the second trimester. I'm hoping! Other then that things are fine. Hopefully Friday we will get some reassuring news about the health of this baby and maybe even find out the gender. Thanks for following...stay tuned...

Irish Twins

I feel I owe somewhat of an explanation for my long absence. There are several reasons that have kept me from the computer. All of them good. But I have to say there is one little secret we've been keeping, okay BIG secret.

The beautiful little 5 month old in the picture above will become a BIG sister before her first birthday! To say we are shocked is a huge understatement. We found out almost 2 months ago. Just to refresh every one's memory 2 months ago was just days after Katie's heart surgery. She was only 3 1/2 months old!

The only plan for babies in our house over the next several years was to be puppies birthed by mommy Koda. There are several reasons why we have waited until now to share our news. Some of those reasons I'm not so proud of. The first couple weeks was filled with complete shock. Yes, we know where babies come from, this being my 5th pregnancy in 6 years, but we are quite baffled to say the least. For any of you who have had a sick child know it is more then a full time job and the emotional toll it takes is indescribable. We were preoccupied by many things during those months. The shock soon became overtaken by extreme morning sickness. I made a bed on the couch and rarely moved for 5 weeks. This was the main reason for my disappearance. Pregnancy is hard on me. I hear stories of woman loving pregnancy and I can honestly say that has never been me. Just being honest. Like I said there are feelings associated with this new baby I'm not proud of. Our 3 kiddos were very planned, I required clomid to conceive Kaitlyn. We've always wanted a large family, but at this point in our life our plate was extremely full. We were open to the possibility of a 4Th but at a much later date.

Ohhhh our two little boys. We've just started talking to them about the possibility of another baby. Their feelings about the issue change day to day. They love their little sister but are still traumatized by our separation at her birth and then again for even longer during her surgery. Every time I leave they need reassurance that I won't be gone long, and if I tell them Kaitlyn or I need to go to the doctor they make sure its not the "faraway doctor." This pregnancy has become an adjustment for all of us. I am confident that we will feel pure joy at the birth of this baby, the guilt of it not happening yet is horrible.

Little Kaitlyn, her smile and love make each day. Even when I felt horribly sick just one look at her made me feel better. I have been able to find good in her having a younger sibling. It took awhile! She needs me, but I'm confident there will be enough love to go around and her having a close sibling will bring an aspect to her life that will be more then I could have given her. Brady and Bryce are 16 mths apart. They are best friends and are each others half, they have the most amazing connection and love each other beyond words. Kaitlyn can have that too. It will be like having 2 sets of twins. Our doctor (while chuckling) told us that two babies born within 12 months of each other are Irish twins. Who knew?! :) Did I mention my due date is Katie's birthday!!! Your laughing at me aren't you!?! Since I will have a c-section they will be a few days shy of 1 yr apart.

Isn't she beautiful!!!

I am in my 13Th week of pregnancy and have already begone the testing for Trisomy 18 and 21 in this baby. Down syndrome is a genetic disorder but is rarely hereditary. A women at 30 has a 1/500 chance of having a baby with Ds. Since we already have a child with Ds our chances before testing are 1/100. The quad screen that detected a 1/80 chance of Katie having Ds was done around 16 weeks. An amnio at 19 weeks confirmed it. Since we already know we are at a slightly higher risk we were told that doing testing (a sequential screen) between 11-13 weeks is a lot more accurate then the quad screen. This is combined of a blood test and an ultrasound done to measure the thickness of a certain "tube" at the back of the babies neck. It is easier to get this measurement at this stage in pregnancy then later on. I will get more blood taken in a couple weeks and they will give us our odds. The preliminary results came back 1/3000 for Ds and 1/10,000 for T18. We were relieved but will hold off celebrating. After the final results come back we will be given the option of an amnio. This is the only way to get diagnostic results. We aren't sure what we'll do yet?!
(Yes, we could have had a CVS, done between 11-13 weeks, but with a 1/100 chance of miscarriage this wasn't an option for us, this too is a diagnostic test)

So there you have it, our BIG secret is revealed!!! I apologize if you are in our close circle and are upset you didn't get a phone call. We just told our parents! With my Mom sick there never really seemed to be a good time. I will update on her soon. She's strong, but its been a real fight!

Did or do you sign with your baby?

I am anxious to start signing with Kaitlyn. From what I've read children with Down syndrome tend to have delayed speech and problems with being understood. They often can comprehend what is being said and want to respond but have a difficult time expressing them self. Sign language hopefully will allow us to communicate with Katie sooner and help her be understood eliminating some of the frustration she might have when trying to express herself.

Do you sign with your child? I would love some pointer's and to hear of your experiences. Has it been helpful? What are some of the signs you started with? I am anxious to get the boys involved. Brady (5yrs) loves to sign the alphabet and I think he will love to teach his sister. I only know the basics so I have some learning to do!

I would love to hear from you!

We're Back!!!

I know I've been away awhile. Life has been nice and normal around here for the first time in a LONG time. There is a lot to write about and I promise to get to it all real soon. Today I posted a few pictures. The TN grandparents were begging to see her.
This first picture is Katie in her new exercauser. It was a Christmas gift from her grandparents. She is still small and can only go in for short periods of time but she LOVES it.


The second picture is of Katie playing with herself in the mirror. She cracks herself up. This has become the best way to get her to spend time on her tummy. She is getting stronger everyday!



Look at how good her chest is healing. It truly is amazing! This picture was taken about 6 weeks after surgery.



Kaitlyn loves her baths and loves to smile. She had just taken a bath. Look at her red "orange" hair. I love it!



More to come soon, I promise!!!!!!!