Welcome to Janna's Web Page. It is provided to keep everyone updated on our little one's progress.
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"For God created Janna's inmost being; He knit her together in her mother's womb. We praise Him because she is fearfully and wonderfully made; His works are wonderful - we know that full well. Janna's frame was not hidden from Him when she was made in the secret place. When she was woven together in the depths of the earth, God's eyes saw her unformed body. All of the days ordained for her were written in His book before one of them came to be. Psalm 139:13-16 (paraphrased)"
Janna Macie
Born: 02/02/05 9:49pm
Weight: 6lb. 15oz. Length: 20 inches
Most people only dream of angels......we get to hold ours!
For those of you eager to learn, thought I would share with you a pair of ANGEL EYES. As you can see, Janna is blessed with what are called 'Brushfield Spots' - the tiny white specks that circle her iris'. Here is a medical definition to chew on; Spots, Brushfield's: Speckled iris. Little white spots slightly elevated on the surface of the iris and are arranged in a ring concentric with the pupil. These spots occur in children but are far more frequent in children with Down syndrome (Trisomy 21). They were described in 1924 by Thomas Brushfield and are due to aggregation of a normal iris element (connective tissue). Just so you know - they pose no problems what so ever. They are just beautiful to me and we have always adored these special specks that the Lord blessed her with. Now, is she going to have dark brown eyes like mommy or is she going to keep daddy's blue/gray peepers? I detect some brown trying to come in, don't you? WRONG! Janna's eyes never turned brown. They are pretty much gray and hazel most days - LOL.
Yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary. Isaiah 40:31
"Where there is charity and wisdom, there is neither fear nor ignorance."
St. Francis of Assisi
My Story in a Nutshell
Mommy and daddy had not planned on me – but God knew just what He was doing. He sent me their way because He knew they would love me - no matter what. I was born with a heart defect (AV Canal). The following link, AV Canal Defect will explain this defect and show you an example of where the hole was in my little heart. It was patched with Gortex on June 2nd, 2005 at Duke University Medical Center by Dr. Jim Jaggers Dr. Jaggers says that the hole was the size of a 50 cent piece - so basically my little heart was a big hole. My daddy was also born with a heart defect – a different one than I had, called Tetralogy of Fallot (TOF). Dr. Jaggers replaced one of daddy’s heart valves 2 months before I was born. My friend in GA, Austin, was born with TOF also. His webpage link is at the bottom of this page. Here’s a link to see my cardiologist, Dr. Milazzo. I really like him and his nurse Cathy and get to visit them often. Right after I turned one, Dr. Jaggers performed another heart surgery to repair my Mitral Valve as it was leaking severely. It's not perfect and still leaks some but they say it's better for me to have my own valve as long as possible. One day they may have to replace this valve with a mechanical one but mommy and daddy are praying that they won't have to.
I was also born with T21 (Trisomy 21) or more commonly known as Down syndrome. If you have any questions about what T21 is, please visit this page to learn more….. T21
Most people do not realize that people with T21 are more like others than different. We need love and support just as all others do, no matter what defects, disabilities, or challenges, etc. My mommy is mathematically challenged but please don’t tell her boss - LOL. Point is – we all have challenges/disabilities, and we all need each other for love and support. Here are a few links to make you more aware; NDSS and NADS
For those of you who enjoy BASEBALL, and maybe the Cardinals……please visit, Pujols
Boy did I get out of the nutshell – sorry. Since my heart surgeries, I‘ve been doing really well. I enjoy watching Baby Einstein videos, playing with all kinds of toys on the floor, in my crib, exersaucer or most anywhere. I like rolling around, playing with my feet, and trying to crawl – although I get mad sometimes when I can’t move forward – I can move backwards though. I like for mommy and daddy to sing, talk, and read to me. I really like blowing raspberries/bubbles and smiling! I love oatmeal cereal and many vegetables and fruits. I also sleep really well at night, although I don’t like to take very long naps. I cry sometimes in the evenings when I'm really tired or my tummy hurts. I dirty diapers too. You see, I’m just like any other baby, except I have an extra 21st chromosome and that makes me X-tra special.
As you can see, God has been extra good to us. Baby girl stole our hearts upon arrival and she is brightening every day that passes. She is very precious to us. We could never love her enough!
BEEN FARMING TOO LONG!
No, she's not ALWAYS smiling! : )
He gives power to the faint and weary, and to him who has no might He increases strength. Isaiah 40:29
The Down Syndrome Creed
My face may be different, But my feelings the same. I laugh, I cry, I take pride in my gains. I was sent here among you To teach you to love. As God in the heavens Looks down from above. To Him I'm no different, His love knows no bounds. It's those here among you In cities and towns, That judge me by standards That man has imparted. But the family He's chosen will help me get started. For I'm one of His children, So special and few, That came here to learn The same lessons as you. That love is acceptance It must come from the heart. We all have the same purpose, Though not the same start. The Lord gave my life To live and embrace. And I'll do it as you do, Just at my own pace.
Here's a NEW Video Montage of Janna's first year! Just click on 'Our Angel in Skin' to view. Our Angel in Skin You may recall seeing the Pujols Family Foundation link above many months ago. Well, they had a Mother Daughter Tea last year and I thought some of you might be interested in seeing the video which includes the song 'The Last Ones' by Matthew West.
Just click on the link below to see it.
Once you open the link, click on See The Video, bottom left to view.
“The Last Ones” is a true story from when Matthew West met a 10-year-old girl named Taylor who was diagnosed with Down Syndrome. West best describes the song himself in a quote not long after he met Taylor, West said, “From the moment I met her, I felt like there was something really amazing about this girl.” He explained, “In the past when I would walk by a child or adult with Down Syndrome, my first thought was to feel sorry for them because I thought they’d never be like everyone else. But the more I got to know Taylor, I realized that maybe she was feeling sorry for me. She seemed to have something inside that told me she knew something I didn’t. She loved people regardless of where they came from. She didn’t care what color they were or what was different about them. She taught me the lesson that history makers come in all shapes and sizes.”
REMEMBER, IF THE MOUNTAIN IS SMOOTH, YOU CAN'T CLIMB IT!
Click on the HUGE Christmas Ornament above to visit the Reece's Rainbow Christmas Angel Tree. Please consider sponsoring the adoption of one of these sweet kids. Everyone deserves a 'Forever Family'. Merry Christmas!
HAPPY THANKSGIVING! We received the most wonderful Thanksgiving gift! For the first time ever, Janna's cardiologist said, "See you in a year!" on Wednesday, November 25th. We are ecstatic and didn't see this coming. We visited Dr. Milazzo every 3 months in the early years and then every 6 months for the last year and a half or so. Janna's Mitral Valve is still leaking moderately but has been stable for the last 3 or 4 echos. No worse, no better. So, he gave us a year off, ALL praise to God! We are so thankful for this great news! We'll miss seeing him and Nurse Cathy (or 'Khaki' as Janna says) but we're very thankful we get a whole year off!
Janna has been doing really well. She had to fight another sinus infection a few weeks back but with the help of Amoxicillin she got it beat. She really loves school and all of the kids in her class absolutely love her. She's the baby in age, size, and development so they all love helping her out and looking out for her. She is becoming more and more independent and learning so much! She has an exceptionally wonderful teacher and we are SO thankful for Ms. Smith and her assistant Ms. Herring! Janna's speech is in the fine tune mode lately. She can spit out a lot but we have to slow her down at times. Many of her words are becoming more clearly as well. And she is willing to use her words more and more rather than signs to ask for things. She's becoming quite a little jabber box! More reserved at school and out and about but very verbal at home and Grandma's too, of course.
Grandpa had a hip replacement November 16th and has really had a tough time. He's more sore now and not in a lot of pain as before. Unfortunately he had an allergic reaction to the antibiotic or pain meds and has a terrible itchy rash/hives off and on. If he can ever get rid of that he'll feel much better I'm sure. He's able to bear more weight on his surgery leg now and is using a walker at all times. A nurse and PT are coming out 3 times a week to assist with his rehabilitation and blood draws for his coumadin levels. Thanksgiving Eve, Grandpa ran into A LOT of unbearable pain. The doctor on call had him go to the ER so he has been back in the hospital since Thanksgiving Eve. He was bleeding out in the surgery wound and they had to give him 2 pints of blood. He may get home tomorrow (Nov 30). Janna has had real fun hobbling around and acting like she's had a hip replacement and wanting her back scratched like G-pa. Never a dull moment with this child :)
I'll quit typing and start adding (WAY too many) pictures of our sweet girl from over the last few months. We've been busy with the Buddy Walk, company picnic, the Miracle League, etc. I'll let the pictures do the talking;
Playing in the back of daddy's truck.
We got hay for Mitch and Max for the winter! Janna checking to make sure we didn't lose any of the hay : )
Daddy, Janna, and Midnight
Loving on Midnight and trying to make him smile for the camera : )
Miracle League rain-out game in October (2009)
A lady donating a $1050.00 check that was raised at VBS at her church this summer. This $ will go toward funding the field being built for Johnston County Miracle League.
Who me, get wet and muddy?!
They had a ball running round and round in the puddles!
Talecris Co Picnic October 2009 Janna and Maverick Coor
Riding the pony, Dakota.
The JUMP queen!
Giving Maverick five!
The cowboy on stilts - Janna absolutely loved this guy!
Lindsay Yates all roped up and Janna trying to help her out.
Giving it a try.
All roped up!
Buying salt blocks for the pony boys.
Our contortionist sleeper who refuses any cubbers (covers)!
Outside with Midnight October 16, 2009
Janna took a hard fall from the top of the ladder - rubbing her hands and trying not to cry.
Say "CHEESE" Midnight!
Race you to the top!
Sneaking up on Midnight - she got him!
Awwwwwwwwwwww
Yes, he rode the swing, for a few seconds!
Having fun!
Waiting at the bottom of the slide for his buddy.
The Buddy Walk in Raleigh, October 11, 2009
A nice young man helping Janna make it through the jump house - she was loving it!
And JUMP, JUMP, JUMP is what she did and wanted to do all day at the Buddy Walk!
The gang starting out for the walk. Darlene, Aunt April & Uncle Del, Kendall, Grandma Best, Joe, me, & Janna. Grandpa stayed in a chair : )
Janna with big hugs for Darlene.
Eliana (Janna's friend from Durham) with big hugs for Darlene.
Sweet Eliana!
Janna and Eliana discussing the cool picture of the cowboy.
Big hugs - sweet girls!
Riding the Fire Truck with Grandma and cousin Kendall.
A sweet dog, Lucy. Janna will find the animals and wants to act like they're her own.
Having fun sliding and golfing!
And MORE JUMPING!
And, yes, that's me dragging Janna out of the jumping bubble to go home!
Janna's favorite snack of late - Gold Fish Crackers with cream cheese, or as she says it, "Crackers with cheese on it!"
The Wayne County Fair! I took Janna out to see the animals after school one day and let her have a little fun as well, although she did NOT want to leave the big slide! She LOVED it!
And she also loved riding this little caterpillar coaster : )
Enjoying the sunshine and Midnight! October 1, 2009
Miracle League Nov 7, 2009 Ready to go be a "ball player"!
Being silly before the game, wearing her hat backwards. In fact this is about the only time she wore the hat.
My team, The Reds! Did they really think I could stand still for a picture!
Mr. Monty holding Chance and Janna still for the picture.
Janna mainly wanted to play in the dirt : )
Janna and her buddy Matthew - she loves hanging out with Matthew and giving him hugs.
And trying to push his chair.
YAY, I'm up to bat next!
Mr. Monty helping me line the bat up.
Made it to first!
Me and Mrs. Jan on second.
Time for a little play in the dirt!
Mrs. Jan (my buddy that I wore out) helping me get ready for the field.
Another at bat.
Another at dirt.
Playing the field.
My line drive!
Come on Mrs. Jan!
Standing on second again.
Pulling buddies all around.
Headed for home! Thank you Mrs. Jan!
Trophy time! Running past the guy holding her trophy out for her to take.
Picking out her own trophy from the box!
Running back to daddy with the prize!
Back at home with her pal Midnight! Combing his hair with a stick : )
Thank you God for Midnight!
Our BEST cardio appointment ever : ) November 25, 2009 Playing in the waiting room area.
Being Silly!
And fake snoring.
Patiently waiting and reading books.
DVD in hand, ready for the echo!
None too thrilled at the echo tech rubbing the camera probe on her chest.
Dealing with it and watching her show. We thought that we may have to use sedation this time. She really put up a fuss for this echo but we finally got her calm enough to get it done.
THANKSGIVING DAY! November 26, 2009 Playing the Go Fishing Game with daddy!
Wanting to climb a tree badly.
My sweet Uncle Del helped me to climb a tree.
Playing ball with my cousin's, Hannah and Kendall.
My cousins, Hannah, Trey, and Kendall.
Hannah & Janna
Kendall & Janna
Trey & Janna
Daddy helped me climb into the tree again.
I did it!
A sweet kitty that Aunt Elaine said I could take home. We're still working on daddy : )
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