Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Friday, July 27, 2012

Isabella









Our sweet friend, Isabella, recently left this earth for heaven. She was 7.5 months old and such a fighter! She, like Julia, had trisomy 18 and an associated heart condition. She had open heart surgery in April but the surgeons were unable to repair everything. Her little heart just could not keep up with her strong spirit.

Isabella came into our lives nearly two months after we lost Julia. Meeting her and her family and getting to know them was like a healing ointment on my wound of grief. I felt as though I was still fighting for Julia by helping Isabella and her family in any way possible. I was also captivated with her as soon as I met her. She was a feisty little girl who knew what she wanted and what she did not want. She was and is inspiring and strong and so well loved. Thank you to her parents, Patricia and Randy, for sharing Isa with me and my family. We love her and are grateful to know her. She is with our Julia now...

Monday, July 23, 2012

Week 10

Cohen had his 2 month pediatrician visit and vaccines this week. He weighed 12 lbs 4 oz and measured 23 1/4 inches long! Cohen also flew in an airplane for the first time (after missing his originally scheduled flight the same morning, but that's another story...). He behaved beautifully on the flight! He is also enjoying his first visit to Alabama to visit family. He met Great-Granny and Great- Papa at the farm and charmed them with his smiles and coos!



New Trisomy 13/18 Article






A new article about families of children with Trisomy 13 and 18 was published today in the medical journal Pediatrics. A huge thank you to Trisomy advocate and fellow Trisomy mom, Barb Farlow, for her years of hard work in bringing together Trisomy families and some compassionate members of the medical community to produce this research.
The news release from the University of Montreal: http://www.nouvelles.umontreal.ca/udem-news/news/20120723-children-with-trisomy-13-and-18-and-their-families-are-happy.html
Journal Abstract: http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract
A blog post written by a well-known neonatologist regarding this article: http://neonatalresearch.org/2012/07/23/our-children-are-not-a-diagnosis-the-family-experience-of-trisomy-13-and-18/#comments

Wednesday, July 18, 2012

Cohen's Newborn Photos





The very talented Emily at Veralana Photography did a great job of capturing Cohen as a sweet little newborn.  He was only 4 days old when these photos were taken!  I just love them! Here are a few of the precious photos...



























































Tuesday, July 17, 2012

Weeks 8 and 9



Week 8: Cohen celebrated his first Fourth of July with a couple of neighborhood parties. It was a hot one, but he was a trooper. He turned in before the big fireworks got started, though.
We had the pleasure to introduce Cohen to Isabella this week. Isabella is 7 months old and, like Julia, has trisomy 18. Seeing these two precious babies together was very special to me. We all love you, Isabella!



Week 9: This week we took our first road trip and beach vacation with Cohen. We were joined at Corolla Beach, NC by Cohen's Nana and Grandad; Aunt Jodie, Uncle Press, cousins Nora, Eli, and Grady; Uncle Jamey and Aunt Naomi; Aunt Jennifer, and Uncle Nathan. It was a full house! Cohen climbed the lighthouse at Corolla (with Daddy's help), visited the giant sand dunes at Jockey's Ridge, and sat on the shore enjoying the sounds of the wind and surf!


Monday, July 16, 2012

At Two Months



At two months I can...
- Smile!
- Coo sweetly
- Wear 3-6 month clothes
- Fit into size 2 diapers
- Roll...sometimes!
- Hold up my head (except when sleepy)
- Tip the scales at over 12 lbs!

Likes:
- watching Sydney and Isaac
- eating
- bath time
- watching the mobile
- kicking my feet
- waving my arms around
- taking naps, but only on my belly!

Dislikes:
- long car rides
- photo sessions on the beach (more on that to come)
- being hungry
- diaper and clothes changes

Happy 2 months, Cohen! Thank you for bringing so many smiles to us!



Friday, July 6, 2012

Outer Banks Revisited

Two years ago we took our first vacation to the beaches of the Outer Banks in North Carolina. I was pregnant with Julia, and we had just that day learned of Julia's heart defect and suspected chromosomal disorder. We had to decide quickly about the amniocentesis as I was nearly 24 weeks along. At that time the docs strongly suspected Trisomy 21, or Down Syndrome. Oh, how I wish they had been right about that! We were back and forth about the amnio decision-- not because we would have chosen to terminate but because of the risk. I ultimately decided against the amnio and decided to prepare for a baby with DS and heart problems. Of course the subsequent appointments with the perinatologists showed more and more problems that would be more consistent with trisomy 18. Sometimes I wish I would have had the amnio and would have been able to prepare for Julia's diagnosis. Ultimately it did not make a big difference. We were devastated to learn of her diagnosis after birth, but either way we could not have had any idea that she would live with us for a year. Especially with her specific set of heart defects. But she did.
Last summer we visited the beach with Julia, but this time it was in Florida. It was so special to be with her at the beach and know that she experienced such a beautiful place.
This summer we are again vacationing at the Outer Banks. This time our little rainbow baby, Cohen, is with us. And so are our memories of sweet Julia.

Thursday, July 5, 2012

Sydney's 4th of July

Sydney requested the opportunity to write another blog post, so here it is!

On the 4th, we had two parties to go to. The first party was at the Wilson's pipestem. It had a hill and lots of toy vehicles to drive around in. I also went in the bounce house that had standing foam obstacles and a slide! In the food section I got some lemonade ,a plain tortilla, and a hot dog. Yum! After that party we went to the cookout in the pipestem nearest to us. We played in Georgia and Reed's backyard. A while later, I ate some Doritos and a cupcake and the fruit kabobs we brought. Then the exploding things (fireworks) started! There were tiny fireworks that shot out of strange sticks, colorful smoke bombs, sparklers, and small fire works. Starting at 9:00 were the really big fire works!
Happy 4th of July!!!

By Sydney R. C.

Wednesday, July 4, 2012

July 4th



The girl cousins: Julia,  Sydney,  and Nora -- July 2011

Remembering our Julia from last July -- she was especially smiley on this day at the lake! I love this photo of her in her red, white, and blue swimsuit! Click here for a video. We miss our girl so much -- sending you much love and hugs, Julia!

Today we are also remembering sweet Lilly, aka "Little Firecracker" on her birthday. She and Julia arrived in heaven only hours apart. Sending hugs to Lilly and to Lilly's family on this special day.

Tuesday, July 3, 2012

Weeks 6 & 7



Week 6: Cohen smiled for the first time! He has been making some very sweet cooing sounds, too. He especially likes watching and listening to his mobile.  He also attended Sydney's dance recital and Sydney's birthday party at Pump It Up. Nana came for her second visit since Cohen was born and we had a great time!
(We also bought a new computer and have been transferring things over which is why week 6 is bundled with 7!)

Week 7: Cohen rolled over for the first time! It seemed intentional, and we will have to see when he does it again. He made it to another of Sydney's recitals -- piano this time! He was very well-behaved.  We had a fun visit from Gma and Gpa from Illinois and great-Grandma from Kentucky when they came to meet Cohen!