Excited for Presents

This morning we are having trouble keeping Everlly away from the presents. Even though she can't crawling, she has no problem scooting her way to the Christmas tree!

Merry Christmas!

Breakfast & Therapeutic Listening

My sleeping Angel after Birth To Three

We had our first session of Therapeutic Listening today, so excited to continue it and see the effect it will have on Everlly!

Me & My Baby Girl

16 Months Old...

FINALLY....16 months, 16 days.....A TOOTH!

Last minute trip to Door County....

Getting ready for Everlly's 15 month photo shoot!

A Beautiful Autumn Day

What a mess....

Everlly was trying to help me sort through her clothes to get ready for winter....what a little helper!

Cribbage at Great-Grandpa & Grandpa's

15 Months Old today!

Grandma Jackie & Her Grand-Babies

What happened at her genetics appointment.......

Last Friday we made a visit to Everlly's genetics doctor, she hasn't see her since she was 1 day old in the hospital. She is very scientific woman and bases everything on the cold-hard facts and the last time we spoke about my child having Down Syndrome (Everlly was still in my belly.....at about 20 weeks) She, well, made Scott and I feel horrible, explaining what could all go wrong with our baby.

This time around, it was completely different. She came in the room and Everlly immediately started babbling. The doctor couldn't believe it. She just stared at Everlly in awe. She asked about what she could all do.....crawling- No; pulling herself up- Sometimes.

She told us about a gentleman with DS and said he was the best breakdancer ever and is a motivational speaker and tells what it's like having DS.

In her own words the doctor said, "I really feel that Everlly has a very bright future ahead of her & she will do very well in life."

WOW! Did those words really just come out of this doctor's mouth?

She stayed with us in the room for quite some time, her and the genetics counselor. They said it was so refreshing to see how well she is doing and how fantastic Everlly's verbal skills are.

To be honest I was dreading this appointment for so long, but to have a doctor that bases everything on "the facts" and to look at my daughter and tell Scott and I that her future is bright, was a beautiful gift.

Even though we have good and some bad days and sometimes I feel like I'm trying so hard to get her to crawl and she just doesn't want to....I know it will come in time and I'm trying so hard to be patient and Everlly's Birth to Three therapist re-assures me that we are doing a wonderful job.

I wouldn't change our lives with Everlly, not one, single moment of it. She was given to us for a reason and I love her just the way she is and couldn't imagine our lives any other way.

BIG Milestone! ––– She can pull herself up!

Everlly will be 14 months old August 18. And the last couple of days she's been pulling herself up to her toybox. What a big, exciting moment for us! She isn't crawling yet and still has no teeth, but this milestone is so surreal for us. She is saying words and recently started saying, "Hi Kitty" & her new sign she learned is "Puppy"

Our little hipster...

Bubbles!

For Everlly...

Cousins

It was a beautiful Friday afternoon with all 5 kids playing outside.

Grandpa Hubing loves Everlly

Everlly's First Birthday

Thank you to everyone that helped us celebrate Everlly's first birthday! xoxo

Our little Everlly is 1 year old!

She took the words right out of my mouth!

Everlly has been making amazing progress lately. We are still working on crawling at 10-1/2 months, but all in time, I'm being very patient and she will when she wants to. She is so cute when she is kicking her legs when she's on her belly and trying so hard to get the toy in front of her!


She claps like crazy! 3 weeks ago she learned on a Sunday and she never stopped clapping that day!


Everlly loves to wave. When I tell her to wave, "Hi" she waves, when I tell her to wave "Bye" she waves automatically with a huge smile on her face! She has a "Princess Wave" its just the cutest, most precious thing! I'm a very proud mommy and it makes my heart melt when I pick her up after work and she gives me a big wave and is so excited to see me!


She can say "Mama" and "Dada" – Tonight I told her to say "Bye-Bye Daddy" she looked right at Scott and said, "Bye-Bye" and gave him her "Princess Wave" – Scott's jaw dropped to the floor!

47 xx +21

Scott and I were over-joyed with our brand new little girl, we couldn't of ask for a better gift from God. After she was given a bath and cleaned up, they took her to the nursery to have a few tests done. Scott went to make some calls to let everyone know that our baby was born. I remember when the nurse were getting me ready to go to my room. They put me in a wheelchair and started towards the door. A doctor came in and stopped me and said without hesitation, "We are about 98% positive that your daughter has Down Syndrome." I could feel a couple of the nurse hands starting to pat me shoulders and say, "I'm sorry." But even with them saying "sorry", I didn't feel sad about it. And after all of the past months of worrying about our baby having the possibility of having Down Syndrome, it didn't matter one bit, in fact I didn't even cry about it, I smiled as they wheeled me to my room and couldn't wait to get Everlly back into my arms! Scott and I both know she was meant for us and each day she manages to surprise us. The genetics doctor, that we met months and months ago came to look at Everlly and examine her in our room. She was quite surprised how strong her neck muscles where, and that coming from someone that well, we felt had no bedside manner, made us even happier.


After getting out of the hospital and bringing her home for the first time–which was the scariest moment ever and driving home with her was hectic, looking in the backseat every 2 minutes to make sure she was okay. And after 2 days of being home, she was admitted back into the hospital for jaundice and dehydration, then 2 days after getting out of the hospital, again, we had more appointments for her heart and an ultrasound to look at her intestines, which everything was normal and the PDA in her heart eventually closed after 3 months, YAY! Lastly that day, full of appointments, we learned that Everlly did definitely 100% have Down Syndrome. And that was okay with us.

47 xx +21: 47 chromosomes, female, Everlly has extra an 21st chromosome.

•Trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866.

Down syndrome is a chromosomal condition characterized by the presence of an extra copy of genetic material on the 21st chromosome, either in whole (trisomy 21) or part (such as due to translocations). The effects and extent of the extra copy vary greatly among people, depending on genetic history, and pure chance. The incidence of Down syndrome is estimated at 1 per 733 births, although it is statistically more common with older parents (both mothers and fathers) due to increased mutagenic exposures upon some older parents' reproductive cells. Other factors may also play a role. Down syndrome occurs in all human populations, and analogous effects have been found in other species such as chimpanzees and mice.

& the day finally arrived!

I had for a few months, Braxton Hicks. But once the real contractions started, it was no mistake that we new we would meet our baby soon. It was Thursday, June 17, after lunch I started timing out my contractions at work on a piece of paper by my desk. Towards the end of the day they started to get worst, but I refused to leave work, because they might of stopped. I went home and Scott and I walked around town, timing my contractions and they got worst and worst.


A storm rolled in that evening and it was bad. Thunder and lightening and a downpour of rain. We left for the hospital after midnight. They trip to the hospital 30 minutes away, seemed to take 2 hours with the storm.


We both ran into the ER and they wheeled me to the birth center. After I was all set up with an epidural, Scott and I both slept a little, but I woke up soon after, thinking to myself that I didn't want to do this anymore and I was scared of pushing this baby out of me, I decided that I would just keep her inside of me.


After a few hours, it was time to push....and after 3 hours of pushing our baby was finally here. Scott told me "It's a girl!" I requested that he tell me instead of the doctor.

Everlly Jeanette Kloth was born, 8 lbs. 8 ounces, 19 inches long and a head FULL of dark, black, thick hair!

Where to go from here.

I didn't sleep at all that night and woke up the next morning walking around like a zombie. Where to go from here, when you felt at the time, we received 'devastating news'.


We were told we had to go to the genetics department and talk with a doctor that dealt with this sort of thing. To be honest, she was awful, she had NO bedside manner and made us feel even worse than before. Scott was ready to blow up at her, but he didn't. I remember he was taking his styrofoam coffee cup and scraping up and down on the sides with his finger & 'she' keep on giving him a dirty look. We also had Kara, the genetics counselor, in the room with us. She was wonderful and gave us peace of mind. She actually explained to us, what we didn't understand what the doctor had told us.


The next step was another ultrasound, one of MANY. Our doctor, Dr. Mascola, she is truly the best doctor I have ever had. She kept us in the loop and during the ultrasounds she explained to us and showed us what they needed to keep an eye on. Everlly's ventricles in her brain were enlarged and had to be measured every month to see if they grew or were staying the same size. Another thing we had to worry about was Hydrocephalus or 'water on the brain'. If she did have that when she was born she might of had to have a stint to drain it over time. Luckily, she never needed that.


Everlly also had other markers of a baby with Down Syndrome. Thickness on the back of the neck, an Echogenic Intracardiac Focus, which is a small bright spot seen in the baby’s heart, short femur measurements and nasal bone measurements.


Every time we had an ultrasound it took a long time and we were stressed out every time. But on the otherhand, we got to see our baby a lot, and get lots of beautiful pictures and we didn't mind that one bit.


I remember in one of the last ultrasounds we could see the hair on her head on the ultrasound. Little did we know how much she would be born with!


I guess after a while we just came to accept the fact of our child having Down Syndrome, even though there might of still been a chance our baby wouldn't have it.

& so it began.....

Scott and I found out we were pregnant Sunday, October 18, 2009. We had gone to Walmart and I decided I wanted apple cider, Scott immediately decided that I was pregnant....I said I just wanted apple cider, which I never wanted it before, but just was craving it. We took the pregnancy test and waited....waited....waited. Scott looked at it and with sad look and a pout, he said, "It's negative!" I can still see and hear his expression and voice in my head to this day. I said, "It's negative???" as I looked over the test, "NO, it's positive!" Scott thought 2 pink lines meant it was negative! We were both shocked! I cried, tears of joy and just plain being scared out of my mind! Scott assured me everything would be fine!


As the months went by and the morning sickness surpassed, it was our BIG 20 week ultrasound! Finally this day had come, how exciting we get to see our little bundle of joy, but we decided, well mostly me and having to convince Scott, that we didn't want to know the sex of the baby. I wanted a surprise, after all how many great surprises are there now? They did the usual measuring, which took forever, but even though my back was killing me, seeing our child was amazing! The technician left and during our long wait, baby started to move, I was feeling it for a couple weeks, but Scott never did. He put his hand on my belly and "BAM" the baby kick, it kicked so hard that it actually moved Scott hand up! What a wonderful moment!


I guess a never really suspected anything with how long it was taking them to get back into the room by us, but when the doctor came back in, he looked some more at the baby, smiled at us and left the room.


We headed to my regular 'baby doctor' and I can still remember how much we were laughing, Scott was being his usually comical self and I literally had tears running down my cheeks from laughing so hard and trying to get him to be quiet!


The doctor along with a student and she asked me if I felt as if there was any thing wrong when we were getting the ultrasound done. "No" I said. As she explained, our child looks to have markers of that of a baby with Down Syndrome might have, I feel to pieces....tears rolled down my cheeks and I remember looking at the student, she held a box of tissues in her hand and she gave them to me. I tried so hard to strong and not cry even harder than I already was.


I still don't even remember what my doctor was saying to me, the only thing I heard was Down Syndrome...feeling Scott's hand on my back and looking at the student with this incredibly sad look on her face.


So much information within a 10 minute office visit and I didn't even know what she was saying.


We left the room and we to go see my mom, which she worked in one of the labs in the clinic. I couldn't even walk, Scott held me up and I would take a minute to duck into a corner and cry some more, Scott would pick be back up again and we finished the almost seemingly long trip up to my mom's work area.


I cried....of course I cried when I saw my mom. We told her what the doctors told us. In my hands I had the ultrasound pictures of our baby. And as much as I don't want to admit it, I couldn't look at them, looking at them made me sad, mad and down-right well pissed off about the whole situation. "WHY? This is suppose to be one of the most incredible moments of our lives and now what?"


My mom took the pictures and gazed at them saying, "Jami, look at your baby, it's beautiful"...........(thank you mom, I love you!)

The Beginning

This is the start of my brand-spanking new blog. I am not a writer and don't consider myself that witty and don't believe to have a wide-variety of whimsical words I can use, but this is for Everlly, my almost 10 month old daughter. She the most honest and beautiful thing that I have ever done in the 27 years I have been on this earth. Everlly has Down Syndrome and I'm very proud to say that I am a mother to a child with Down Syndrome. I will from time to time tell our story of how 'Our Everlly' has changed our lives.