Update on Clara Ray

Little Clara had heart surgery today.

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Going into the surgery, the doctors didn’t know if they would be able to do a 2-ventricle repair, or if they would need to make her heart function on 1 single ventricle.  They had to wait and see how she did during surgery, and see how her heart looked.  If a single ventricle was necessary, it would take at least 2 more open heart surgeries to complete the process of converting her heart to function with a single ventricle.

I am so very happy to report that the surgery was incredibly successful.  Not only were the doctors able to preserve both ventricles, but they were able to “fix everything,” according to her mama.  Every hole in her heart and every leaky valve is fixed, and she has a permanent pacemaker.

The next 24 hours are the most critical, and the doctors are watching her closely, but for now, no more major surgeries are on the horizon.  She is expected to recover over the next several weeks, then go home in her Mommy and Daddy’s arms.

To God be the Glory, now and forever.

 

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Welcome, Clara Ray!

Yesterday, another heart warrior was born.  The doctors are already calling Clara Ray a miracle.

Clara

During her mother’s pregnancy, the doctors saw a combination of heart defects they had never before encountered at Boston Children’s hospital.  Although they had seen each defect individually, they had never seen all of the problems occur in one baby.

Clara had a full heart block, a complete unbalanced AV canal, Hetetotaxy syndrome, and hydrops, among other defects.

She wasn’t expected to live past 20 weeks, and of course, the doctors offered her parents an abortion.  Her brave and faithful parents, Johanna and Craig, refused the abortion and started to pray.

It was soon after this that Johanna found Matthew’s story with an internet search, and contacted me.  It has been incredible to watch their journey, celebrating each milestone with them.  When Clara’s heart was still beating at 28 weeks, she had already proved the doctors wrong.  Then came 30 weeks, then 35, and Clara still held on.  She was born early yesterday morning at 38 weeks, weighing 6 lbs, 9.6 oz.

Clara is not out of the woods yet, and still needs our prayers.  She will most likely need a pacemaker soon, and open heart surgeries after that.

Johanna and Craig’s faith is strong, and they have continued to pray, giving God all the credit for each and every step along their journey.  We are so thankful that she is finally in her Mommy and Daddy’s arms, and we praise God for this miraculous little fighter and the gift of new life.

Click on the links below to follow her journey:

GoFundMe page at Clara Ray’s Heart Journey or Facebook at Prayers for Clara Ray

Birthright International Conference

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Last weekend, I had the honor of sharing Matthew’s story at the Birthright International Conference in Newark, NJ.

If you are not familiar with Birthright, it is a wonderful organization that offers free, nonjudgmental help to any woman facing an unplanned, unwanted, or difficult pregnancy.  Their website says, “The essence of Birthright is love,” and we found that to be true as we were welcomed with warm and open arms by all of the delegates at the conference.  What an incredible group of women and men, all of whom have dedicated themselves to “loving both.”  They love all babies, born and unborn, and love their mothers no matter what the circumstances.

I shared Matthew’s story as the keynote speaker at the conference banquet, and it was very well received.

Aaron and I also got to see a part of the country we’d never seen:  New York City!  It was a lot for this small-town-girl to take in, but we had a lot of fun.  We walked through Central Park, rode the elevator to the 86th floor of the Empire State Building, and experienced Times Square and the busy, busy streets of the Big Apple.

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Therapeutic Riding

In the Spring of 2013, our little Matthew was a tiny six-year-old boy.  He was about the size of an average 3-year-old.  Our sweet boy had seen so many doctors, had so many surgeries, and had been to so many therapists in his short lifetime, that Matthew decided he was done with it all.  We dropped out of speech and physical therapy, because Matthew was refusing to cooperate during the sessions despite everyone’s best efforts.  However, we felt like he was doing well at home.  He was starting to use more and more words, and would use sign language when he couldn’t verbalize something.  He would run, jump, climb and play with his brothers, and was truly a delightful, vibrant part of our family.  Still, as his mother, I would wonder if there wasn’t something more we could be doing for him.

At one of the parent support-group meetings for families with special needs in our area, I picked up a brochure for Blue Mountain Therapeutic Riding.  I admit, I was a skeptic at the start.  Our past experiences with therapy had made me hesitant to expect any real therapeutic benefits, but I knew Matthew would enjoy the experience.  He loved animals of all kinds, but horses were his favorite.  We decided to enroll Matthew, and see how it went.

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Matthew loved every single minute he was able to spend with his therapy horse.  His smile would be so big, and his eyes would be so bright, that it would often bring tears to my own eyes to see him so happy.  My little guy who struggled to speak would talk endlessly about his horse.  He would be so excited to ride, that he would talk all the way to his riding lesson, and all the way home.  His instructors also insisted that he use the correct commands, spoken loudly and clearly to the horse.  This was speech therapy, but Matthew didn’t know it!

I was also surprised by the benefits therapeutic riding provided for improving Matthew’s core strength and balance. During that first summer, he needed volunteers to hold both of his legs to keep him from slipping off the horse.  But, as he gained balance and strength, playing “airplane” or “picking apples” while riding bare-back, it became obvious that this was physical therapy, too.  By the second summer, he had graduated to a saddle and stirrups, and by the third summer, he was holding the reins.

We were thrilled that Matthew’s speech was improving, and that he was gaining strength and balance, but there was still more.  Matthew would often stop his horse by the fence to wave and say, “I did it, Mommy!  Look at me!  I did it myself!”  The pride and confidence he gained is absolutely priceless.

There are therapeutic benefits that are harder to put into words, too.  If we had a tough day, riding would fix it.  If Matthew was struggling and frustrated with something, riding would ease his stress.  If he wasn’t feeling well that day, he would feel better while he was on his horse.  I will forever be thankful that we found therapeutic riding for Matthew.  I truly can’t say enough wonderful things about it, or the patient, kind instructors and volunteers at Blue Mountain Therapeutic Riding.  Thank you for all that you do.  We can’t wait for the Summer session to start!

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Jesse got to enjoy a beautiful evening ride, too!

Kid Quiz

Last Tuesday, Nathan broke my nose.  I was laying down with him, putting him to bed, when he sat up, then flung himself backwards and hit my nose with the back of his hard head.  I had to have it surgically reset on Friday, so we have been taking it easy for the last few days.

I used a little bit of the down time to interview the kids individually with questions a friend had sent me.  I hope you enjoy their answers – I sure did!

 

1. What is something I always say to you?

Micah (10): “Let’s go outside.”

Matthew (8): “God.”

Jesse (6): “Jesse!  Jesse!”

Mikayla (3): “No movies before school.”

2. What makes me happy?

“When I clean up the kitchen”

“Crazy”

“When I take care of you”

“Taking care of your nose.”

3. What makes me sad?

“When Nathan gets hurt”

“Hospital”

“When I choose to not follow God”

“When we start a bath by ourselves without any grownups”

4. How do I make you laugh?

“Tickling”

“Ice cream cake!”

“Doing something so fun that I laugh”

“Playing with Nathan’s bammer”

5. What was I like when I was little?

“You had glasses”

“five”

“Just like me!”

“You wore the tight flower jammies”

6. How old am I?

“34”

“10”

“13”

“27”

How tall am I?

“5’6″”

“8”

“Normal”

“98”

8. What is my favorite thing to do?

“Not break your nose”

“Candles”

“Snuggle with me”

“cook”

9. What do I do when you’re not around?

“Go to ice cream shops”

“Garden”

“Talk with Daddy and clean up the kitchen”

“I don’t know”

10. What am I really good at?

“singing”

“Hiding”

“being beautiful”

“cooking”

11. What am I not very good at?

“catching chickens”

“kudu”

“Nothing”

“singing funny like Daddy”

12. What do I do for a job?

“be my mom”

“working”

“Take care of your own kids”

“Putting Nathan to bed”

13.What is my favorite food?

“cheese-stuffed mushrooms”

“muffin”

“Thai food”

“Muffins”

Regional Birthright Conference

I had the privilege of sharing Matthew’s story at the Regional Birthright Conference today. It was such an honor, and so great to be there!  I couldn’t have asked for a warmer, more welcoming audience. Thanks for inviting me, Birthright!

As promised, here are the links I mentioned today during the presentation:

BeNotAfraid.net is an excellent resource for any parents facing an adverse prenatal diagnosis.  It is full of stories from parents who refused abortion, even when facing devastating medical circumstances.  It offers support and encouragement for parents who face any kind of medical issues with their baby during pregnancy.

Raising A Boy Who Wasn’t Supposed to Live is the article about Matthew that was published on the “What to Expect When You are Expecting” website, and viewed over one million times.

Matthew’s Miracle: The Healing of a Broken Heart is a more complete version of Matthew’s story.

Thank you again for having me today.  If you have any questions or comments for me, please feel free to contact me at: amyvawter@gmail.com.

Turn Around, and You’re Eight!

Oh my!  Has it really been a year since my last post?  I guess I have been too busy living life to blog about it!

Matthew the Miracle turned EIGHT this week!  When the boys asked Matthew, “What kind of birthday do you want?,” and gave him options such as “race car birthday, pirate birthday, glow-stick birthday, balloon birthday…” he replied, “Church birthday!  Father-David!” We were able to start his day of celebration with a beautiful Mass celebrated by Fr. David. I love this kid’s heart, and he has already taught us so much. I can’t wait to see what else God has planned for his life!

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Our mission for this birthday was to find a bicycle Matthew could ride.  He has long outgrown our little tricycle, and never liked the feeling of the balance-bike.  Even a bike with training wheels felt too unsteady for him, and he would give up.  We needed something fun, exciting, steady, and easy to pedal and steer.  We looked at adaptive tricycles made for children with special needs, but with price tags of $2K-$6K, those were out of the question!

Then, we found the Mobito on Amazon.com.  It was exactly what wemobito were looking for.  It fits Matthew perfectly on the smallest setting, and will be able to grow with him for many years.  It looks so “cool,” and is so fun to ride, that all of the other kids beg for a turn on it, too!

Matthew is growing up in so many way.  His speech is becoming clearer and clearer, and he is now able to sound out simple words in addition to reading over 50 sight-words.  We are so proud!