It's a Happy Heart Month!

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Since Turner Syndrome Awareness Month and Heart Month are in February, I want to make a tradition of doing fun and special things with our special girl! We did some fun art projects, like marble painting, and I did a few crafty things I found on Pinterest (my addiction). I think Avery liked looking at my cheesy decorations, so it made it worth the time. 

Sweet Mrs. Linda made Avery two special shirts. Avery was so proud to wear them. The black one says, "There is no bravery without Avery." I never thought how Avery's name is found in the word "bravery," but isn't that sweet? 

Avery and Jake sent roses to school for my Valentine! The funny thing is that I had a textbook professional development in Jackson today, so I wasn't at school! Thankfully, Avery's daycare is right by our school, so I dropped by to pick my surprise up after getting her. Can you believe this is the first time I've ever gotten flowers at work? They are beautiful and I appreciate the thought from Jake more than he knows. Hopefully, he enjoyed the homemade Snickers I made him! They were sinful I must say! Avery made hand print art at school for us, marble paintings for her grandparents, and she took her teachers homemade candy. I printed out butterflies for suckers from Pinterest to give to her friends. Jake and I got her a Brobee pillow (her fav from "Yo Gabba") and she was very frightened by him! She LOVES him now- I guess it's because he is big! 

The Choctaws played baseball tonight (as they do every year I believe), and it was too cold for Avery to go to the game (I also can't imagine her at Smith-Wills yet), so we had a girls night Valentine dinner. She loved the "Pink Love Potion!" She used to love pancakes, but lately, all she will eat is the bacon. I made them pink with strawberries any way and added pink syrup and sprinkles! They were good to me! 

My awesome school is helping raise funds again this year for Cross Healed Hearts. How blessed am I to work somewhere that would be so supportive of this ministry that is so dear to my family? We even scheduled our own "Wear Red Day" this year. My students are all asking to make blankets for the babies in the hospital and my homeroom class bought over 800 stickers and won the nacho party I award for the class with the most sticker sales!

We couldn't forget Avery's special doctors during heart month! I made a sweet slideshow with pictures of Avery from before her last surgery to now, and told them how much we appreciate them. They are our heroes! Dr. Ebeid said it really warmed his heart and brought a smile to his face. Dr. Bacha said it was so gratifying to see Avery doing so well.  I sent "happies" to Dr. E, Nurse Carley, and our wonderful pediatrician, Dr. Van Norman and her nurses. They all have been so amazing to us, and taken such good care of Avery- we can never say thank you enough! I don't think I will ever go a year without acknowledging them for how they've helped us. I praise God daily that he placed us in the hands of wonderful physicians!

To end this month of awareness and fun, I attended the Pierce Allen Helms Benefit which is donating proceeds to the Batson Pediatric Heart Center. I am very excited about having two fantastic heart surgeons here in Mississippi. No child should ever leave our state with heart concerns again. What a relief that is for families! Dr. Salazar shared a very informative slide show with us and told about his vision for the Heart Center. The success they are having with saving lives is above the national average. Children that used to die are now being saved by new techniques. Avery should be able to have a much less invasive procedure (rather than open heart surgery) when the time comes to replace her valve! We also have imaging that is world class. Mississippi has come so far just in the past few years, and other states are now sending children to us! God is good! The following picture is a piece of art containing hand prints (including Avery's) of heart children with a special heart flower in honor of Baby Pierce. Erin did a wonderful job with this piece. It was presented to Dr. Salazar to be placed at Batson. 

Leah asked me to share Avery's story which is an honor considering all of the amazing miracles just in our area. I was extremely nervous after following a top-class heart surgeon and the stories of Leah Helms and Kristi Pena; however, my main focus was to thank the incredible staff at Batson for what they have done for our family while urging others to give and support our state's only children's hospital. I may be able to speak in front of many children daily, but adults are a different story! Hopefully, I got the point across and made sense! 

I enjoyed spending time with my buddy Lacey and visiting with Batson staff as well as local "heart" friends. A few people even told me how much they love giving out the heart pillows from Cross Healed Hearts. They said it is a very meaningful gift to patients and that one dad came back to the PICU (after his son was moved to the floor) just to have his nurse sign his son's pillow for him. That really warms my heart. It was a nice evening for a great cause, and I even won some hair products my friend Laura donated for the silent auction! 

I was also asked to participate in Blair E. Batson's Radiothon this year to share our story. It was a great experience for a cause that is very dear to our hearts. I spoke on 98.7 and 96.3. $381, 289.00 was raised for the hospital this year! 

I am continually surprised at the things I have done since Avery came into my life. God has put me to work in ways that I never thought were possible for me with my semi-shy personality. It's funny how He has you step our of your comfort zone to do things.

Happy Heart Month Everyone! ♥

Avery's Endocrinology App., Feb. 7, 2012

We've always gone to the endocrinologist every 6 months; however, since starting the growth hormone treatment, we must go every 3 months. This appointment, Avery had to have blood work done to ensure she had normal levels with her thyroid, etc. Turner Syndrome girls are more prone to issues with many things and the growth hormones can add a little more risk too, so we have to be cautious. As always, we turned onto Woodrow Wilson and Avery began to whine. She seems to work herself up more now than she used to, and what begins as a fake sort of cry, ends up being screaming, tears, and well...throwing up! She settles once we are in the outside waiting room, then gets upset every time a nurse comes out to call a patient. When we get called back, she gets a bit louder, but she will walk onto the scale and put her back against the wall for her height. She hates the BP cuff, and they never get an accurate reading, but we get through that part too. Next, we head to the waiting room as she tells everyone, "bye!" Jake usually speaks with the nurse outside, so they can hear one another! Avery then settles down and begins to watch videos or listen to music. As you can see above, M&Ms seem to help, lol.
Dr. Dixit entered the room, and it's funny, but Avery doesn't get too frazzled by her. As a matter of fact, she ended up giving her high fives and a hug at the end! I think it is because she doesn't have to do much for her examination- she'll take a listen, but it's mainly a discussion. Avery is now 22.8 pounds and 33 inches tall.She will be 3 in June, so she is definitely small for her age. Most girls with TS don't fall off the normal growth curve until age 2, and Avery has never been on the normal scale. She has grown around 2 inches in the last 3 months; however, Dr. Dixit expected her to have more rapid growth on the HGH. She is responding to the treatment, but it is working a little slower which is probably due to her TS and other things she has going on. We talked about upping the protein in Avery's diet and we will start her back on PediaSure. We've been giving her Ovaltine because it is less expensive. Dr. Dixit upped her Genotropin dose from .5ml to .6 ml. Afterwards, we went for blood work, and Avery screamed, but she didn't fight them as much as usual. Jake and I didn't even have to help! They got 3 vials, and told us we'd receive a call with the results. Our next appointment is in July due to something being changed over with the system in June. They tried May, but it was the day of our state test, so that couldn't be done!
Jake went on to work, and Avery and I ran home to change to prevent having the smell of throw up on us all day! Hopefully, this phase will end soon- she's done it at our last 2 appointments! Everyone looks as if we are contagious when it happens, and we get enough stares as it is with all the crying. I shouldn't care what-so-ever, but people getting the wrong ideas has always bothered me!
This has been a rather emotional week for me with so much going on. Dad begins his treatments this next week, this week is the anniversary of Avery's NYC surgery, her appointment was stressful, and then I got a call from daycare on Thursday that I missed. They called and left a message saying Avery began screaming at nap time. They thought it was because a familiar teacher (but not her teacher) was in the room putting them down. When her teacher entered the room, she climbed up her, clinging to her, and proceeded to scream and cry. She continued crying and sitting in the laps of two ladies throughout nap time and never went to sleep. Since they couldn't get her to calm down and she'd never done this before, they called me. I was busy with my students and didn't see the call. Thankfully, I was able to go check on her and she seemed fine when I got there. I called the pediatrician's office and they didn't think it could be growing pains or anything, They told me to watch her- may be she just had a bad day? Avery has laid down readily for a nap since day one at her daycare. She is on the go so much- she never stops, so she is always tired at that point! The following day, I called to check on her, and she was doing fine. Afterwards, I received a call with Avery's blood work results.
It looks like her thyroid levels are elevated a good bit. The nurse said not slightly and not extremely- somewhere in the middle. This hyperthyroidism can keep her from gaining weight and make her extremely active. Kids that have this often act as if they have ADHD. Avery has trouble calming down to rest any way, and she has been very restless lately. It is difficult to  get her to sleep at night. She is so active that she burns calories quickly making it difficult to gain weight. Her doctor is putting her on Levoxyl daily to get her thyroid levels within normal range. I know this is a good thing, but it still makes me a little sad. We got rid of one heart med. and added this one instead. It's definitely difficult not to worry. Worry is just one of those mountains I am relying on God to move. We are so extremely blessed with Avery's health, strength and abilities, and I know God has her in his hands every second of every day. He has shown that to be true continually. He lets me be emotional, but he also sets me straight by putting things in perspective allowing me to see the big picture.
Isaiah 40:31...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint.

This is Avery dancing in the room while waiting on her doctor. This is what I need to remember- she's healthy, she's happy, and every little thing is gonna be alright! Through my moments of weakness comes strength. My hope is in you, Lord! 

Avery is...

filling in the blanks to songs as I sing- Me: You are my, Avery: sa-shi (sunshine), Me: My only, Avery: sa-shi, Me: You make me, Avery: happy.....

singing along with her shows and copying dance moves ( I either have a gymnast or a dancer on my hands it seems) 

saying her friends' names at school

conversing more and stringing words (she isn't very clear, but I don't want to rush into speech therapy- will wait until she is 3 and see where she is then)

continuing to do pull-ups on our cabinets and drawers- climbing on EVERYTHING!

wanting to watch The Fresh Beat Band over and over again on demand

sighing- so funny, she goes "ahhh" like she is just exhausted- copies Jake and me I think

Listen for the whispers...

Romans 12:2
Do not conform to the patterns of this world, but be transformed by the renewing of your mind, then you will be able to test and approve what God's will is- his good, pleasing and perfect will. 


I've always had so much trouble discerning in my mind what exactly is from God and what is from my own personal thoughts and wishes. I think it is something that many struggle with in life. I've really worked hard to listen for God's whispers the past few years, and I have noticed that through prayer and being still before the Lord, he has revealed himself more clearly in my life. I had an amazing moment today. It was a moment I knew I had to share for my children to read one day. I have written before about how the Cross Healed Hearts blog came about...I promised myself and God that I would share Avery's story and the many miracles of God's hand on our lives during my pregnancy. I wasn't quite sure how everything would come to fruition, but one summer night after Avery's first birthday, I feel that God gave me a thought. I spent the next several days working on a little blog even though I had no idea how to even do it at first! I figured things out and Cross Healed Hearts came to be. Afterwards, of course, came the hospital ministry, etc., but it all came to be because I listened and then I acted. I admit I haven't always done that before- acted. God took care of the what?, how?, when?, and where?. He did it all, and he did it all for his own purpose not my own. Since that point, my life has been blessed continuously through the many mothers and families I have met. I am always in awe of the amazing things God does, and the crazy ways he brings us all together. All you can say is. "it's a God thing." I say all of this to get to what happened to me today. 
I received a donation online the other day from someone who had never contacted me before. There wasn't a note, just an instant email notifying me of the donation. I sent a little thank you email, and asked what brought the lady to my blog. To my amazement, she emailed me back today. I won't share all of the details of her story without her permission, but she is pregnant with her first child. She recently found out that her child has a cystic hygroma like Avery had. They were offered termination at the appointment as the geneticist and other medical staff sat awaiting their answer. When she asked if the hygroma could resolve they were told the following: 


She told us that it is possible that the hygroma would resolve - it does happen - but the chances are so slim.  Additionally, even if it did resolve - the cystic hygroma is indicative of such serious abnormalities, the baby still wouldn't likely survive.  She then proceeded to say "This is why many women simply terminate.  Of course, there are a few who would prefer to let nature handle the miscarriage or who believe in God or whatever to take care of things."


Thankfully, this poor mother and her husband wouldn't choose termination; however, all hope had to quickly drain away with those words. She then went on to say this...

"Although I don't know what happens next on our journey, I'm taking everything day-by-day and just praying with all of my might for the life of our baby.  Having found Cross Healed Hearts, this is a lot easier to for me to do.  I was reminded by the site of the power of prayer, hope and faith, and that miracles do happen - hope that I desperately needed.  I was also reminded by the site that should we lose our baby, he or she will be welcomed into the most perfect place and fully embraced by the most perfect love that God can give.  And, though we will hurt here without our baby, our child will be blessed."

" I can't begin to explain how blessed I am by every story of survival...and struggle, and how moved I am by what everyone has shared on this site.  It's such a gift to be able to feel joy and gratitude for the children that have made it and are continuing to thrive and fight every day.  I don't have to fear bitterness or envy taking over me...as I was afraid might happen.  Instead, I have been reminded of the everyday miracles that do occur, the grace of God, the power of faith and the strength that comes through believing."

I just want to praise God for what he has done and will continue to do. For all of those who have shared your story- this is why it is so very important! God uses us and these stories to show his incredible power and love. They give peace that can only be found in him to others. 


I can't help but wonder about times I've missed hearing and acting on God'e whispers. It is something I hope I continually get better at and strive to do. We don't always get to see lives that we possibly touch, but God sees them and knows them all. He has the greater plan in mind, and it continues to surpass our understanding. Trusting, listening and acting is vital in fulfilling the purpose he's set forth for us.