Tis the Season!

And now, a word about Christmas from our boy child:

Kinda melts your heart, huh? We are so thankful for this little boy! We are thankful that he "gets it" when it comes to the meaning of Christmas. We are thankful that we have him this Christmas. Realistically, if Pierson's CHD hadn't been caught and surgically corrected he wouldn't be alive right now. He didn't have much time left. To know that he has a second chance at life --- and that his precious little heart is learning to love Jesus make me want to rejoice and cry all at once.
We have been in full swing celebrating Jesus' birthday here for a while. I love everything about this time of year. Something that no one told me about becoming a parent is that life gets more fun -- and that includes Christmas. We have been having a blast. We have had more fun celebrations this year. We feel so thankful that Pierson is more interested in Jesus' birthday than Santa or presents.

So here's what we have been up to:

Climbing and sliding down the planters by the duck/turtle ponds at North Park. We are so thankful that he has the energy/desire to do this. Last year he would just watch the other kids. We just thought he liked to watch... not that he was conserving his energy/oxygen levels.






Our 2011 Christmas Card Pic snapped at the Gaylord

 We also spent a Sunday at the Gaylord Texan with my parents enjoying brunch, the ICE Exhibit and the amazing Christmas decorations there. We had a great time and even snapped a picture for our Christmas card. Well, I say we had a great time. Pierson actually really hated the ICE exhibit. After about one minute in there in an issued heavy duty parka he had a (rare) complete meltdown (excuse the pun) because of how cold it was in the exhibit. I now feel like we never have to worry about him moving horribly far away to some cold place for school or work.  I ended up taking him out early and letting Jeff and my parents enjoy. He was NOT happy at ICE but the rest of our visit there was wonderful! We had brunch by the river walk there and explored the train exhibit. We will be going back next year.



You can see here how much he did not love the cold!



Some of the most fun we have had was Pierson's Christmas program at his preschool. We are so thankful that God placed us at this school. We know that when Pierson goes to school his needs of spiritual, academic, social and physical growth are being met. We know he is being challenged and held accountable. All the children did a fantastic job! It was so fun to see the 2 year olds and how small they were and to think that P was that little a year ago. Pierson sung out loudly and we could hear him. He also demonstrated tempo very well when the teacher asked the children to do so. He gets his rhythm from Jeff. Not me!

P-Dawg and friends displaying tempo. P is looking at the teacher.

Pierson singing his precious little heart out at his preschool Christmas program

I keep thinking about how extra special these memories are and how extra special this Christmas is because we might not have had this Christmas with Pierson. I was thinking as we were watching him sing the other night how blessed we are. He might not have been up there if his heart defect had not been detected and corrected. One of the other moms of his classmates remarked to me about how much he has grown (we're almost at 4 inches since July) and I said, "Yes! Now that his heart is working he's growing like a weed" She was a little taken back. She had no idea he had heart surgery (they were gone most of the summer). No one is ever going to know by looking at Pierson what all he has gone through and how close we came to losing him. That's a good thing! We feel blessed that he is on his way to being a tall, strong young man. Our prayer is that other families with heart kids can look at Pierson and know his story and have comfort that their child will be ok too.

Of course, our greatest prayer for Pierson's heart is that it will be filled with Jesus. We pray that he grows to be a man of the Lord -- and that he exudes honor, courage, servanthood, and an unshakable love for the Lord and His people. Beat to praise Him little heart! Beat strong!

My Chat With a Grown-Up TGA/VSD Baby

You know when you're on Facebook and you see someone's status and it makes you think of them and memories you have of them? Well I saw Wade Ashby's status a few weeks ago and all of a sudden I was reminded that Wade was a congenital heart baby too -- only he's not a baby anymore: He's 29, that's older than me and he has a new baby girl of his own. I remembered my uncle talking about their friends who had the miracle heart baby when I was younger. That baby was Wade. Of course, that's just talk that grown-ups converse about as my cousins and I played barbies on the floor. I know Wade through my cousins who grew up with him in Snyder, Texas --- and I also dated his brother for a while in high school. I was his brother's senior prom date -- I was a sophomore, yes, I was pretty awesome. ;-) I will spare you the 1999 prom picture.
So I decided I would message Wade. He was always a nice guy. I was curious what his CHD was. Wade is an incredible man of God. He has his Master's of Divinity and works for Hardin Simmons University. I will sum up the feelings I had about how Wade's words blessed me and moved me and answered some questions I was having a hard time finding answers to at the end of this blog. The following is a copy paste of our messages. My words are in pink, Wade's are in blue.

Hey Wade! Hope all is well with you. Kelley said you guys are expecting a baby next month. Yay! There is nothing like the joy of being a parent.
Also, when Kelley and I were talking she reminded me you were born with a heart defect and I was wondering if I could be nosy and ask which one.
Our little boy was diagnosed with coarctation of the aorta and an underdeveloped aorta and had surgery in July and since then our world has been opened up to so many families with congenital heart defects.  I was just wondering which one you had so when meet new families who have babies and kids just diagnosed we can say we know an adult who has this. It's so comforting to be able to look at a adult who was where your child was one time to see that there is hope.
Does your CHD effect your life at all as an adult? Do you have to take any meds? How often do you have to go to the cardiologist? Any advice for parents raising kids with the same CHD you have?
I know it's kind of early in the morning for all of these questions! Hope is so precious to these families especially when they are first diagnosed and it feels like you just got broadsided.
Hope your day is so blessed.
Jane, that is correct we are expecting a little girl in 29 days but who's counting. =) Don't worry about being nosy you are more than welcome to ask me any question. My thought has always been to tell everyone about my heart condition so people can be aware of it and learn from and about it. I was born with Transposition of the greater vessels (or arteries). Basically my aorta and pulmonary vessels were switched causing me to have 2 circles rather than a figure-8 circulatory system. Along with the transposition I was born with a VSD (ventricular septal defect -aka hole in the ventricle) and this is what allow the oxygenated and un-oxygenated blood to mix. My first surgery was when I was about 9 weeks where they actually enlarged the hole in my heart and placed a band around my aorta to keep the pressure from hurting it. Then for the next four years I was cyanotic (blue boy) until my second surgery (a Mustard Procedure which they no longer preform) which reconstructed my heart. So now my heart flows backwards (what the left side of your does the right side of mine does) and has enlarged to compensate for the condition. As a result of the growing the electrical system started have trouble about 2 years ago and I had to get a pacemaker implanted at the age of 27 (23 years after the surgery). Now must children born with Transpositions just have the vessels cut and reattached properly so they don't get the fun story of being blue for four years =)
As of now I'm only taking one medicine which is a blood pressure medication that helps relieve some of the stress on my on my heart. I see my cardiologist in Houston once a year and call my pacemaker in every three months. As of 2007 (or there about) Baylor College of Medicine in Houston has a new branch of called Adults with Congenital Heart Disease and that is where my cardiologist is. As far as advice for parents…the greatest thing I think my parents did for me was to allow me to set my on limits when it came to physical activities while still being parents. So even with a heart defect I played a year of little dribblers basketball and 3 years of baseball with the understanding that I wouldn’t be allowed to play football because of the contact. Also teach the child that the heart condition (or any condition for that matter) does not define who he/she is but merely shapes him/her. The child can be whoever as long as the parent encourages and helps them.
Sorry for the long message, but one more thing. As I grew up in the church one of the hardest things for me to deal with was Psalm 139:13-14. Since it was said so flippantly in the church that every little kid is special (while they are) it left me feeling that God had messed up when he made me since I wasn’t “normal.” I also remember when people would say it and then remember I had a heart condition and then qualify it with especially you and your heart. Frankly it upset me because I wanted to be like everyone else to fit in. When I understood all of Psalm 139 that helped but the thing that helped the most was reading John 9. To think the man had to be born blind (no fault of anyone) so that Jesus could make a point. I had to be born with a heart condition so that Jesus can make a point (which there are many times He has when I look back in life).Psalm 139 is a verse we have repeated over and over again to Pierson literally since the day he was born as we were touching his sweet little fingers and blue little toes (why no one pointed out that his toes being blue might be a sign of a heart defect while he was a baby is still beyond us) And after his diagnosis in June it has been something we have kept saying but honestly in our hearts it’s been a little harder to say. We so never thought of tying John 9 in to that. Thank you so much!!!! We have no doubt that God is using Pierson’s heart defect, surgery and recovery for His glory and take great joy in this -- even though we never would have chosen this for how He would use him -- We know full well that it’s not our call. That’s one of the scariest parts of parenting.
I know other families with TGA /VSDbabies . I actually made friends with another mom in the heart unit while we were there who had a TGA baby who had just been diagnosed after her 8 week check up. That will mean so much to them to know an almost 30 year old grown up TGA/VSD “baby”.
Thank you so much for responding and so fast and so honestly.
Wade's parents are wonderful people. I loved hearing how his parents handled this. More than anything though what really touched me was what Wade said about Psalm 139. This moved me. I went and told Jeff and we both had a moment. Psalm 139 had become no less true to us after P's diagnosis -- but it had been a little harder to regurgitate and fully process. The Bible is God's truth. This verse was just as true as it had always been but it was like I was almost saying "except for his heart, it was broken" in the back of my mind. John 9. That's the chapter all of us heart parents, or any parent with a special needs child for that matter should always remember. Wade's words gave us hope and a renewed spirit and attitude. We are thankful for Wade. We pray that Pierson also grows up to also speak boldly about how God has used him and his broken heart. We would also be just fine if Pierson some day had his Masters of Divinity. I am grateful for Wade sharing with me.
--- On another note: We are full on in occupational therapy for Pierson now. He had a 1 hour session on Thursday and it wore him out. It's hard to watch him struggle --- it is fun to see him swing on the trapeze. I'm around geriatric therapy every day. As I was watching Pierson swing from a trapeze and sort rings while laying on a giant ball twice his size I got the funniest picture in my head of what my sweet little 75+ year old patients would look like doing the same exercises. I have to admit -- I giggled.
Pray for endurance for Pierson during his occupational therapy and pray that he keeps loving it and looks forward to it every week.

How Could We NOT Be Thankful?

I can't believe it's almost Thanksgiving. We have so much to be Thankful for this year. I know that's said a lot, but really... this has been a pretty unexepected year and we are Thankful.
So what's been going on with us? A lot. Since last I blogged we have celebrated Halloween and found out that this part of our heart journey isn't as closed of a case as we thought it was. Let's start with the part about Halloween though.
Pierson had 5 Halloween events. Yes, 5. This was his 4th Halloween. I've never had to wash his costume before so he could wear it "the next time" before but this time I had to wash it twice! One of the Halloween events was actually at the hospital! Amazing Little Hearts, the support group that we were connected with through our surgeon's office throws a few parties a year specifically for the heart kids who have had surgery at the children's hospital. It was fantastic! They had games, face painting, amazing decorations and you really got the sense that you were not alone in this congenital heart defect thing. We lined up to do a group picture and I looked around and thought, "1 in 100. This is just a sample of what 1 in 100 looks like. Wow." It was great to see all those heart kids running around and playing games. I'm sure it brought joy to Dr. Mendeloff and his staff. It was funny, there was a line to get a picture with Dr. Mendeloff as if he was Mickey at Disney World. He has had his talented hands inside each child there repairing their tiny little hearts. He's definantly our hero and the hero of everyone else there. Something else that struck me was how lucky we are. I know that sounds crazy to non-heart parents but as we looked around we saw kids with G-tubes, on vents, in wheelchairs... we got to avoid that but were by no means immune to being in that same position. We are so blessed.  

A sample of what 1 in 100 looks like.



P's heart surgeon, Dr. Eric Mendeloff



Our precious Child Life Specialist, Margarita.



On Halloween itself we had our good friends and neighbors, the Bailey's over for dinner then went trick of treating. This was the first year P has really "got it" as far as trick of treating. The kids had a blast and we had a blast watching them. When we got back to the house Pierson decided it was his turn to hand out candy. He greeted each child and told them he liked their costume and asked how old they were. What a joy he is! We are so thankful for him, his life and the spirit God has placed inside of him. May He continue to grow it to be kind, thoughtful and friendly so that sweet spirit may be used to win others to the Lord.   

P and B before trick or treating.



Love these 2!



Waiting to hand out candy to more children.

Ok, now to the heart stuff. I'll break this down in to two parts. The first part I ask you to please be diligent in prayer about. A few weeks ago Pierson's wonderful preschool teacher (truly this woman is a gift from God) pulled me aside and showed me some of Pierson's school work. The letter tracing they are working on was very lightly written and sporatic. Two things popped in to my mind: Maybe he's just immature, his birthday is at the end of the school year and Hmmm... maybe I should compare this to some of his school work from last year and see if I see a difference. I compared and I did see a difference. Last year his marks were firm and large... this year his marks were tiny and weak. His teacher also had said he looked almost uncomfortable in his chair and didn't sit well at the table. I work with one of the best occupational therapist in the world and I have learned a lot from her about how our hands work. So, I did some research and found out that some kids can lose fine motor development after surgery. Via my best friend who is a fabulous kindergarten teacher I learned that through the school district I could get Pierson screened for Early Childhood Intervention.
I took Pierson for the ECI screening and here's what we found out: Pierson has a very very high IQ. The little toot was asked to count 11 blocks and he did... IN SPANISH! Show off!!!! After he did that he looked at the screener and me and smiled as if to say "that was pretty awesome, huh?" The screener laughed and said "Very good. Now can you do that in English too?" What do you think gave away that we weren't native Spanish speakers? Our day-glow-white skin and blonde hair? Maybe.  He aced everything on the ECI screening except for the hearing screen on the left ear -- we'll get to that later. However, he really struggled on part of the fine motor skills. They were constantly having to put the pencil back in his hand and I could see what his teacher meant when she said he looked almost painful sitting in the chair. The school disctrict said basically he didn't qualify for any of their services but to keep pursuing help elsewhere. So we did.
We went and got a complete pediatric occupational therapy evaluation and here's what we found out: Pierson made some compensations after his surgery to deal with pain and kept making them after he felt better. By doing this, some of his muscle development was diminished and he is now behind on his fine motor skills development. What this means is he will need a good amount of occupational therapy to catch back up to where he needs to be for an almost 3 and a half year old. This can be done but it's going to be a lot of work and there will be some tough parts. One thing that needs to be done is splinting on his hands. He has been locking his shoulders and in turn using hisarms and hands incorrectly. He is now in the habbit of using his thumb and pointer finger in tandem. The splints need to be worn during school work and eating so his thumb and finger can be retrained to do the right things. I worry about the splints only becaue I'm afraid other kids might ask questions and might make him feel embarrassed? Any ideas on how to make that more fun? I've thought of telling him they're his "Mr. Art" (our recycle man he adores) gloves. They'll be blue, so he'll like that. The wiggeling in his chair is also him making up for some lost muscle control because of how he has been holding his body after surgery. We feel bad that we didn't notice this. But to us, him being able to hit a baseball and run meant he was physically fine. We never thought about him stopping using muscles and how that might effect his body and function.
I guess I thought we had escaped heart surgery without any lingering side effects. In the grand scheme of things, this is small stuff. Pierson doesn't have a vent, he's not in a wheelchair, he can chew and swallow on his own. This is small stuff. God has seen us through bigger stuff these last 4 months. He will see us through this as well. I know this is all just part of God's HUGE plan for Pierson and how He will use/ is using Him and his life and special heart for His glory. (John 9.... I have another blog on that coming)
Also, I thought his heart was "fixed" and having a one year pass from the cardiologist meant it was just like a normal heart now. P had an ENT appointment the other day and the doctor said he heard his murmur. This took me back a little... no one ever said anything about a murmur before. I posted on the Amazing Little Hearts page and several other heart moms said docs always comment on their kids' special heartbeats "murmurs" too. I called our cardiologist just in case and he said that the sound that could be heard when you listened to P's chest was not a murmur but in fact the sound of the blood going past the ridge where the reapair was done. That made sense and made me feel better but was also a wake up call to me that no matter how much I wanted P's heart to be "normal" it isn't, and never will be. It's repaired and we're good for now but there's always a risk. I guess we needed to know that. Denial's a fun place, isn't it?
All in all we are thankful and grateful. We realise if Dr. Adams hadn't taken P's blood pressure seriously and started the chain of events that lead to P's diagnosis we likely wouldn't have Pierson to celebrate this Thanksgiving with. We are thankful that God's plan included having Pierson just waking up as I'm finishing this blog and snuggeling with me in Christmas pajamas with some serious blonde bedhead going on.
Thank you for praying for him friends!!!!

Our 3 month Check-Up

Friday was Pierson’s 3 month post-up follow up. I think follow-ups are scary for us (and probably most heart parents) because you are walking in to a great big unknown. Are you leaving with good news? Are you leaving with bad news? Are we going straight to the hospital after this? Do we need another surgery? Are we about to get introduced to heart caths?

The first time we ever walked in to this office we were hoping nothing was wrong (even though my gut was telling me different) and left with our world turned upside down. We had absolutely no reason to believe anything was wrong this time but again, it’s just walking in to the unknown that’s scary. The only way I can compare it is you’ve been dropped off at the airport and you are forced to get on a plane with minimum luggage, having no idea where it will land. Are we going to land in Maui and have beautiful island weather and fresh fruit or land in the desert without any water? Of course we were praying for Maui. But my tummy was in knots about the possibility of a desert landing.

We got an EKG and Echocardiogram all at the same time this time. We also had a new echo tech, which meant I couldn’t read him as well as I had read the one we had before. This echo was taking a long time, longer than the one we had in July after P’s surgery and that was making me super nervous. Pierson was yet again the perfect little heart patient. He did exactly as he was told and held still and kept quiet. What a great kid! The echo tech took tons of pictures of his aorta and aortic arch (as a heart parent, you learn to know what part of the heart the echo tech is looking at by where they have the conductor on your child’s chest). The echo tech asked questions – "So you had the surgery on what date in July?" "Who was your surgeon?" "So I see they went through his back…" Looking back that was small talk… but I was thinking "Why is he asking that? Is there more scarring than there should be? …. Has his aorta re-arc’d?)



Pierson getting his EKG and Echo



Dr. Laird came in and spoke with us once we were in the exam room. The poor little girl in the room next to us was having a complete melt down. It’s not easy being a heart kid! He looked at Pierson’s blood pressure log… that I had kept in excel spreadsheet format… because that’s how we roll in the Hale house. He took P’s blood pressure… 102/56 which was 7 under his parameter (woot!). Then he had Pierson lay down and I instinctively took P’s shoe off. I knew he was going to want to feel his pulses and check his profusion. After he got done checking P out Dr. Laird sat back down on his stool so we could chat. Gulp. Moment of truth. Ok. Here it goes. Teeth clinched, holding breath…..
"His aorta looks great where they did the repair. His heart is now a normal size and it is a normal thickness. His profusion is excellent and his blood pressure is within range. I’m fine with him discontinuing the Enalapril (blood pressure medicine). I feel good enough about Pierson’s recovery to let you come back and see me in one year."

WHAT?!?!?! Wait a second, we can breathe! AND SMILE!!!! We get to go on with life and come back for a check up not in 3 months, not in 6 months, not in 9 months… ONE WHOLE YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you LORD! We wanted to say "Oky doky! See ya!" But instead thanked Dr. Laird, shook hands, gave high fives. You know, the fun stuff. We literally all danced out of that exam room and down the hall of the professional building. We didn’t even care that people were staring at us. We were rejoicing!

What does this mean for us? Pierson will never be out of the woods. Any child who is born with a congenital heart defect is always has a risk of a problem arising. I am blessed to know the wife of a 29 year old who was born with CoA just like Pierson. He had his surgery when he was 2 weeks old and has lived a healthy life with no restrictions and even played college soccer. He still goes to the cardiologist and there is a possibility that he may face another surgery to replace or repair a valve in his adult life, but other than that he just… lives. He’s married, he’s a dad. He loves the Lord. His wife has been a blessing. But I digress….

What this means is that Pierson will still go to the cardiologist at least once a year forever. You think he’ll still let me come with him when he’s 25? He will always be at risk for his aorta re co-arc’ing, or a valve not working right… but that’s something we will have to address when we get there, if we ever do. We pray we never do. We can’t live in the worrying about "What if". That’s hard for a hyper-planner like me, but God has sure taught me how futile that behavior is through this. To live life in fear would also be not giving God the glory He deserves. HE has healed Pierson .God has heard the cries of his people crying out for complete healing for Pierson. We praise our Heavenly Father for this. It is His healing hands and His will that Pierson would be doing this great. Thank you Lord!!!! I don’t know why our child has been healed and others still suffer and die. That’s how far we’ve come in this. We’ve come from "why does our child have a heart defect" to "Why does ours get to go live a healthy life and our other heart friends don’t." I don’t think we will ever know the answer to that on this side of Heaven. Our God is too good to us.

People who don’t know Pierson do not look at him and think that this is a kid with a heart condition. Heart kids are really good at covering up that there has ever been anything wrong with them. Jeff and I were talking about how we feel so compelled to tell Pierson’s story over and over again so God can be given glory for what He has done and all He has yet to do. We can empathize with people who have chronically ill children now. Our job is now more than ever to praise God and encourage others when thing seem scary and hopeless for them.

Something else I find interesting is how Pierson has developed a heart for other heart kiddos. I was looking at pictures of a new heart friend of ours who is fighting in the heart unit right now and Pierson was looking at the pictures too. "God will heal her too!" He says. My eyes well up with tears way more easily than they did before June 23, 2011. My heart is softer. Pierson’s heart is waaaay healthier.

We will never forget how close we came to tragedy and how lucky blessed we are.

I leave you with a few pictures of our life lately.

Our God is awesome guys. Never forget that.

With Grandad behind the CoOp @ UT

Breakfast at Magnolia on our Austin trip

Pierson and his best bud Jack enjoying a little icecream before the UNT Homecoming parade this weekend

Isaiah 55:8-9 8 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. 9 "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Disney Magic

We are officially back from Disney World. Ok, we have been back for nearly a month! We had the most amazing trip! We went to Disney in 2010 when Pierson was 2 and he had a great time then (as did we) and talked about it all year long. We booked this year's Disney trip back in December, a whole 6 months before we ever knew anything was wrong with Pierson's heart and when we found out there was something wrong with Pierson's heart on June 23, it was one of those things that went through my head when I was thinking about what all we were potentially about those lose...  "There goes our Disney trip this year..."
But Pierson was beyond well enough to go and we went!
Our first stop was to see Buzz and Woody. The line was super short this year and Pierson was growing more and more excited every step closer to him that we got. When it was finally our turn Pierson took off in a sprint towards Woody, arms fully extended. What happened next was just magical. Woody extended his arms and scooped Pierson up and swung him around three times! Pierson was just in awe. Then Buzz did the same thing. He talked to them for a bit and I couldn't understand what he was saying. Then Woody gave him another big hug and Buzz joined in. Then Woody picked Pierson up and sat him on his knee. Jeff snapped the perfect picture. Pierson was gazing lovingly in to Buzz's eyes. It was amazing. We hadn't even been at Disney World for an hour. In this very moment I suddenly became overwhelmed. My eyes filled up with tears and in my head I thought "This is one of those moments. And we get to live in it." What I mean by "one of those moments" is one of those moments that I don't know that we would have had if Pierson's CHD hadn't been found and corrected just in the nick of time. Pierson's aorta was in bad shape and the total health of his heart was too. But God provided us diagnosis and treatment and recovery and here we were, revelling in this moment. We got to be here in this place experiencing this moment with our boy and his healthier than ever heart. We got this gift of getting to celebrate and live in this very moment. I couldn't do anything but cry. We were just so grateful. I will never in my life forget that moment or how I felt in it.

Every part of our trip was amazing. Pierson was really in to rides and games this year which added a whole other element to our trip. What's was funny was that he kind of had an agenda this year too. He was absolutely a part of the planning process and he knew what he wanted to see. He had a lot to talk about with the two guys above! We had the time of our lives. I just kept looking at him and thinking "Praise God." "Thank you God!"
So a few weeks before the trip Pierson started talking about how he wanted to show Mickey his scar from his heart surgery and tell him he had heart surgery. We weren't sure where he came up with that but he had an idea that that was what he needed to do. Our second night there we ate dinner at a really fun restaurant called "Chef Mickey's"  It is a super yummy buffet and all of Mickey and his friends are there dressed in full chef gear and they come from table to table to visit with all the kids. It's a "must do" for us at Disney World. It was at Chef Mickey's that he decided that it was time to show Mickey his battle wounds. It's easier to use the pictures below to tell the story:

Our trip was filled with meeting all of our favorite characters, riding the tea cups over and over (one time we rode them 3 times in a row without getting off --- then mommy and daddy had taken all the spinning we could for the moment) watching the giraffes are zebras outside of our room and OH! Speaking of animals! We met a very special animal on our trip. Right before left  on our trip I read an article about a new baby elephant that had been born. Elephants are his favorite animal by far so I called him over to the computer and read off the story about this animal. When we got to the part about the meaning of the elephant's name "Jabali" I was a bit taken back. Jabali in Swahili means "strong". That's what Pierson's name means too. I told Pierson this and he thought that was too cool that they had the same meanings of the name. "I'm strong too!"  We had no idea how appropriate Pierson's name would be for him when we decided on Pierson but it is. So below are pictures of Jabali and his "pack" Jabali is the smallest elephant in the pictures. He was only a few weeks old when we saw him.

We also got to go to Mickey's Not-So-Scary Halloween party while we were there. Pierson decided he wanted to go as Mike Wazowski. He also told Jeff and I that he wanted Jeff to be Sully and me to be Cecelia Weelia

Pierson as Mike! Having a blast at Mickey's Not So Scary Halloween Party



In front of the Laugh Floor during the Halloween Party



There's no way to capture the magnitude of this parade. It was incredible!



 

There aren't enough words to describe to you how special this trip was so I will try to sum it up in a few words then finish the blog off with a bunch of pictures that will hopefully tell a better story than my failing words.

This was a peace of heaven for our family. When we booked this trip in December we had no idea what was ahead for Pierson and our family. We are thankful that we were financially able to take this trip and that Pierson was healthy enough. God is good to us. That being said. Please please please consider contributing to 2 charities who help send kids to Disney World. Kidd's Kids was started by DJ Kidd Kraddick. Every year they send terminally and chronically ill kids and their families whose parents can not afford a trip like this to Disney World. We have donated to them in the past grateful that Pierson was perfectly healthy, not knowing that we would soon be just like so many of those families who know what it's like to have a child with a potentially life threatening condition in the children's hospital.

We have another trip coming up soon (not to Disney -- booo!) but we will post about that. In the mean time please be praying for us as we approach P's next cardiologist appointment in a week and a half. We will be checking to make sure Pierson's heart muscle has healed and is no longer thick and also we will be looking at the aorta resection to make sure it is growing with him and hasn't recoarc'd. We have no reason to believe any of these things have happened but we still get anxious as the appointments approach because it is always a possibility. I leave you with a few more pictures!

sailing across Bay Lake en route to Magic Kingdom

We went on the triceratop spin 4 times in a row!

It's not a trip to Disney without a Mickey Ice cream!

Watching the Wishes fireworks show atop daddy's shoulders

We are a such a goofy family!

Pierson drove the race car. He told Jeff they were driving "The King"

getting ready to ride the teacups again. I think we did them 15 times this visit.

That's a Disney face if I've ever seen one.

He was the first kiddo to visit Pluto that morning. Special day!

our family Buzz picture. We visited him 4 times.

Name the scene this movie is from

And the beat goes on...

The night before last I went to sleep early and then awoke suddenly and couldn't go back to sleep. I decided since I was up I might as well be useful and not just lay there. I had been up for a while doing some housework (keep in mind this was around 2am) and all of a sudden I hear "Mommy! Mommy! I trying to find you." So I went to find Pierson climbing out of bed, favorite stuffed animal securely tucked under his arm. I picked him up and put him back in bed and took full advantage of the opportunity to cuddle with my baby. As we lay there I thought he was almost asleep. Then that tiny little arm came straight up in the air and tightly wrapped itself around my head and pulled it to his chest. I heard the most beautiful sound. Thud, thud, thud, thud, thud, thud.... what an especially beautiful sound that was. I just left my head there for a long time, listening intently to that beautiful blessed sound. Thud, thud, thud, thud. It was so strong. I just prayed over my boy and his heartbeat. I praised God for his heart beat. It sounds so strong. It was then I remembered what I had prayed for when I was pregnant with Pierson. I would place my hand on my belly and ask God that this baby would have a heart that beats to praise You. I got that line from a song by Christian artist Big Daddy Weave "Audience of One".  That line of the song resinated strongly with me. I remember talking to Jeff about that while I was pregnant. Talking about how I just wanted this baby to fall madly and deeply in love with Jesus and have a heart that beated to praise Him. Never ever ever did I dream that my prayer would revealed in such a literal way. That sweet little thud, thud, thud, thud is a living breathing testament to God. It always has been, from conception. I think most people take a beating heart for granted unless it's in a person who has had heart trouble. Each little beat of that heart is a praise to our Lord. What a beautiful song it is. Others who know Pierson's story or the story of any heart kiddo for that matter don't take his beating heart for granted either.
As believers, and parents who want to raise our kids in Christ, we pray that God will use our children in mighty ways. That's actually a really scary thing to pray. Use my child, Lord. Let him do great things for your kingdom. That's just horrifying! We don't have a say in how God uses our children. You're holding this gift out in your hands and offering it up to the Lord. Relinquishing control. While we never would have chosen this way for Pierson or for our family it has been beautiful to see how God has used him and in turn, us. If even one person's heart is softened for the Lord, if one person can point to Pierson's healing and say "that's God" then He has been glorified. We praise Him for that.
For those of you who have been asking how Pierson is doing, there is one word: Fantastic! You would never know there was anything ever wrong with this kid. He started preschool 3 days a week Monday. It's the same school he's been at for early childhood now he is moved up to the big kid building that houses preschool-kindergarten. Yep, we're in the big leagues now! They're pretty hardcore at this school and P is already thriving in it. They started learning to write their names this week. Can you believe that? He's 3!!!! Bring it. I think he can handle the challenge. Along the same lines of school, this meant a change in our routine. I had to be at work before 8 for a meeting this morning so we left our house earlier than normal. I got him to school with plenty of time to spare, he went right in and started playing and off to work I went. I got to the building next to ours and all of a sudden it hit me: I DIDN'T GIVE P HIS BLOOD PRESSURE MEDICINE! I popped the quickest u-turn safely possible and headed back to the house. I called my administrator on the way back home and told her what I had done. She was dropping her daughter off at school and was so gracious. I think I must have told her "I can't believe I did this! I feel like such a bad mom!" about 3 times. So I ran in to my house and then back up P's school medicine in hand. I was drawing up his dose as I was walking down the hallway to his classroom. It was only 15 minutes past his regular dose at this point (not even close to the danger zone) but I was still beside myself. P's class was getting seated for breakfast when I snuck in. Pierson spotted me and said in a quasi indignant voice "Mommy. What are you doing here?" Apparently I had invaded his school world. I gave him his medicine really quickly and then left. He went back to his activity like nothing had ever happened. Yeeesh. Later that day one of the nurses I work with said "heard you forgot to give Pierson his heart medicine this morning." I bemoaned this and said how bad I felt. She said my administrator had said how I had said I felt like a bad mom. My nurse friend said "You're not a bad mom. You would have been a bad mom if you hadn't gone back and given him his medicine." Can I tell you how much better I felt when she said that? I had been kicking myself that entire morning about my mistake. I needed those words. Oh yeah, I never made it to that meeting.
In Other News:
- It's almost time for us to go to Disney World! Yae! We are all beyond excited to get there and have some
   celebrate and relax time. Wooohoo! We have something very special for Pierson the night we eat at
   Chef Mickey's.
- Pierson and I have been running races around the house a lot lately. A couple weeks ago when we were  
   running something in the back of my knee popped. Finally got that checked out by an ortho doc and it
   seems I have torn my meniscus. Praying that we can avoid surgery. Our insurance company loves us right
   now I'm sure.
- Pierson has been swimming a lot lately and almost has his strength back in the pool. We're putting him back
   in lessons soon
- He has been growing like a weed! He is moving in to 5T clothes and is officially a size 11 shoe! We're not
   sure if we just happened upon a growth spirt or if this whole having a fully functioning heart thing is finally
   allowing his body to grow to its full potential or what. We saw Dr. Adams the other day and she
   remarked his growth spirt. She said he's always been a bigger kid and it's kinda scary to think that was
   him not growing to his full potential. Very thankful that I could have a 6'3" heart baby some day.
- I'm praying about a way to help contribute to 3 congenital heart charities that have touched my heart. God
   has placed that way on my heart. Pray for his hands over mine as I embark on that adventure.
- Please keep praying for P's heart that the heart muscle will not be thick on our next cardiology visit in  
   October. We are getting closer to weaning him from his bp meds. Pray that goes smoothly.
- And in other news we literally just had a very special visitor come to our house! At 6:30 in the morning!
  We have developed a very special relationship with our recycling truck man, Mr. Art. He has let Pierson
  look inside of his truck before, always says "hi". We have baked him cookies. He just came by -- not
  even on a trash day -- and brought Pierson his very own model recycling truck! I tore Pierson out of bed
  and brought him to the door! He went from comatose to beside himself with joy in a matter of 30 seconds!
  We do so love Mr. Art our recycling man! It's the little things that you do for someone that make a huge
  impact on others life. Thank you God for Mr. Art!
God continues to bless us. He is good. May our hearts always beat to praise You.

P playing with his new treasure from our recycling man, Mr. Art

He loves it!

Celebrating One Month Later

So here we are, one month later. This time last month we were hovering over P's bed in ICU debating whether or not either of us should sleep that night. We were scared out of our minds. We had nothing to hold on to but our God. Tonight he is asleep on the floor in our living room "camping". God is so good to us. What a month we have had! Never in a million years would anyone guess that this kid just had heart surgery a month ago.

Pierson "camping" in our living room floor 1 month to the day after surgery to repair his Coarction

We did celebrate today. We let him choose where we would go for lunch. We just knew we were in for Chick-Fil-A or Sonic but he chose Blue Goose for their fajitas. Sounded like a celebration to us! I think one of the things we have learned through this journey has been to celebrate more. Every day is a gift and we need to rejoice in what He has given us. We should mark special events and make a point to thank God for them, no matter how small we may think they are. Big or small, every good and perfect gift comes from Him.
James 1:17  Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.
Our hearts and lives have changed so much since the day P was diagnosed. We didn't know that there was a world of parents and children with Congenital Heart Defects out there. But there is. A heavy burden on my heart is awareness for CHDs. 1 in 100 kids is born with a congenital heart defect. 1 in 150 has a Coarctation of the Aorta like P. My best friend who is a kindergarten teacher made this analogy: At most public schools that means at least 1 child in each grade level has a CHD. That's more common than Autism. There is no regular screening in place for CHDs. These defects are present at birth yet they aren't screened for at birth. Why? Why isn't every child given an echo cardiogram? Every child gets their foot pricked to check for genetic disorders that are far less common than CHDs. It just seems silly to me. If we had not have had Dr. Adams and her diligence Pierson would have dropped one day and we probably would not have been able to save him. That makes me want to throw up just thinking about it. How many kids could be saved if every newborn was screened for CHDs? How many babies go home and die from "SIDS" who actually have CHDs that could have been corrected with surgery. This just seems like some of the most valuable preventative medicine we could have.
When I took Pierson in for his BP screening at the doctor's office this week we got a minute to talk to Dr. Adams. She said that some parents had heard what had gone on with Pierson and decided not to skip their well child visits. Good! Can we say victory? I hate, hate that we had to go through this but will rejoice in that God is using it for His good and for His plan. If even one more child's life is saved because of this then let's call that a victory. That's one less parent who will have to experience the nightmare of losing a child. He is working our trial for His good. He is good. We are able to both enthusiastically rejoice and take perfect rest in Him for that.
Romans 8:27-28  And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God. And we know that in all things God works for the good of those who love him, who^[i] have been called according to his purpose.
So what is next for us? Life! Pierson's recovery is going well. We are slowing down on weaning him from his blood pressure medicine... his heart needs a little more time than the original 6 weeks we were shooting for so he will be on for a little longer than the expected 6 weeks. That's so ok. His incisions have healed nicely and he loves showing them to people when he is asked. P started back to preschool this week. He goes 2 days a week and he was glad to be back, and his teachers and friends were glad to have him back. His teachers can tell a difference in his energy levels. They also said he seems happier. Well I bet, he can finally keep up with the other kids! Last weekend we finally took his 3 year old pictures (hey, we've been a little busy!) and our photographer Sarah Null (who also happens to be our good friend) took pictures and incorporated Pierson's surgical battle wounds. These pictures are so special to us. If you were wondering why Pierson is playing with a trash truck in his pictures it's because he loves trash trucks. It's part of who he is. Wednesdays are trash days at our house and his favorite day of the week. He wakes up on Wednesdays and knows it is trash day! We know our recycling man on a first name basis. Pierson told my mom yesterday that he wanted to be a doctor that heals kids hearts and drives trash trucks to the hospital for kids to see! Sounds like world's best future congenital heart surgeon ever right there!
I am also tackling the joyful task of getting thank you notes out to everyone who has blessed us with sweet encouragement, meals and gifts during this time. Rest assured -- they are on their way folks! The love we have received through all of this has just been unreal. We are beyond blessed and so thankful. There just aren't words.

I wanted to leave you with this verse and some of Pierson's 3 year old pictures. When we were at Dr. Laird's office for P's tests the day he got diagnosed I knew in my heart that something was wrong and was scared. I turned around in the room where we got P's EKG and saw Hebrews 13:5 on the wall. I want to share that verse and the two that come after that with you tonight. Even if Pierson had not had a good outcome, this verse still would have been true. If you're walking through a valley right now, remember this verse. It is His truth and His truth is forever. He loves you so much.
Hebrews 13: 5-7 for He Himself has said, “I WILL NEVER DESERT YOU, NOR WILL I EVER FORSAKE YOU,”  so that we confidently say,  “THE LORD IS MY HELPER, I WILL NOT BE AFRAID. WHAT WILL MAN DO TO ME?” Remember those who led you, who spoke the word of God to you; and considering the result of their conduct, imitate their faith. Jesus Christ is the same yesterday and today and forever.

Season of Praise

It’s a good season. No, not the 106 degree Texas summer; the season of rejoicing we are in. We are in awe guys. We are celebrating God’s goodness. We are celebrating His healing. We are celebrating Him holding on to the 3 of us through all of this. We have nothing to do than to praise Him
People ask how Pierson is doing and we get to say "Great". If you were to see him running around with other kids, or even by himself you would never know that anything ever happened. He has started wanting to race me again. No, I’m still not letting him win every race. I’ve heard several people say "He’s a miracle boy." Wgat's funny is I never had really thought of it that way. But he is! Even though he didn’t have the worst of the worst heart defects he did have a heart defect that would have killed him and now it’s gone and he’s thriving. So yes, he’s a miracle and to not acknowledge that would be to not give God credit where it’s due!

P’s blood pressure was great this week. Had a little scare on Wednesday and when we went to the doctor it was fine. I think the high BP reading may have been user error on my part. Sigh. It’s probably in everyone’s best interest for me to hang up my stethoscope and blood pressure cuff for a while and leave it to the pros. So, we’re praising God for a healthy blood pressure reading --- and for Dr. Adam’s office. Please pray that lowering his blood pressure medicine will continue to go well.

This heart journey we’re on has absolutely been a trial. Probably the hardest we’ve ever endured. Never in my wildest dreams did I ever think P would be in ICU, or have heart surgery. Never did I think we would see defective pieces of his heart in a specimen jar moments after they were removed from his body. Everyone is going to have trials in this life and guess what? They’re going to suck. There. I said it. Suck. Stink just didn’t seem strong enough. Whether it’s a life threatening illness or injury of your child, losing your husband in a car accident right after you have a baby (that actually happened to my best friend), losing a job, a dream falling through, financial troubles, personal illness or injury… whatever: we’re all going to be there. It’s not a question of if but when. God sure has held on to us, tightly and closely. He loves us. He loves you too. One thing we know for sure, and we are seeing actively lived out in our lives right now is how much closer you get to the Lord through these trials. One thing we never asked through this is: why? Please understand this is not to boast at all – we are so weak but we had SO many people praying for us – and that had to be what it was. We surely didn’t pick up Matt Chandler’s attitude of "why not me". God just held so tightly to us that we had peace that this is where He wanted us to be… even though it is not AT ALL where we wanted to be. Oh, how He loves us.

One of our goals will be to make sure Pierson knows to live his life in constant praise – even in the hardest of times. God has so much planned for this little guy. I’m looking forward now more than ever to watching the Lord’s plan unfold for his life. Look at his story already! "Pierson Don" means "Strong Leader of Men". We pray God uses him to lead others to and for the Lord his whole life. God may have begun this work in him now as a young child. If so, praise God for that.

In other news, Jeff and I went on a quasi-date tonight to his cousin’s 30^th birthday party. It was 80’s themed at the bowling alley and it was fantastic. We all got dressed up like people from the 80’s and looked delightfully ridiculous. Pierson I think was pumped to get some serious grandparent time while we were gone. We are thankful for grandparents who live near by. Here are some pics from this momentous occasion. Proof that life goes on after heart surgery. Our God is soooooo good.

John 1: 2-4 Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

My view of our angel from the front seat. Yeah, he's feeling better!



In all our 80's glory!



 







I Had a Moment

So I’m sure all my ministry and counseling friends are going to analyze my coping processes when I tell you all this, and all of the CHD parents are going to probably have a "been there" moment – I experienced the most unexpected thing Friday.

After I put Pierson down for his nap and cleaned up the living room, it happened. It was like all of a sudden out of nowhere it hit me: What the heck just happened? I think that now the "storm" has cleared and we’ve had some time to relax and reflect, it all of a sudden dawned on me, everything that has happened. Yesterday marked exactly one month from the date P was diagnosed with Coarctation of the Aorta. I think that ever since then I have been so involved in the "now" of the situation that I never had time to really realize/internalize the enormity of what was happening. I mean, I understood it, I was living it; but now it’s on a reflective level. I don’t know if it was prompted by the unprecedented half hour cuddle session Pierson allowed me before his nap or just a time of calm or what, but it happened. I got to have a moment with me and my emotions. I think it was healthy.

We are beginning to really do life again. We are going out to eat, socializing, going grocery shopping, playing basketball (P’s shot and accuracy is no worse for the wear by the way) and assuming our normal every day duties and activities. Next week will be our busiest, most alive week we have had since the surgery. We may even get to swim next week! Woohoo! Pierson finally has a scabbed over chest tube site so putting this fish back in the water is on the agenda. It’s an extreme honor when we run in to people who have been praying for P while we’re out and they get to see Pierson thriving for themselves. It’s an honor to know how many people from all over, some who we have never met have been praying for Pierson. We are so humbled and so grateful. Rest assured, God has heard your cries.

It is so nice to look forward to things we have in front of us now. We appreciate each day, each moment, each milestone more now than ever. We fell in love with Disney World last year and we’re going back soon. We had no idea how special this trip would be to us when we booked it in December. This trip will be more of a celebration now than ever. P starting in the 3 year old class at school, Rangers games, UT games, UNT games and homecoming, Halloween, Thanksgiving, Christmas…. It’s not that far away! Every event like that should be celebrated. I think it may just be that we get so lost in the every day and the expected that we forget how precious every moment is. We really shouldn’t do that. Sometimes it takes something like this to open our eyes to the gift that is each day. Each "play with me" is special, each sweet little conversation is a precious blessing -- I pray that we will be able to continue looking at P’s life, and life in general with that same perspective. It’s important to live in "get to" instead of "got to".

Oh! I also wanted to pass this along. I had a friend share the website to this organization called Preemptive Love. It’s an organization bringing life saving surgery to kids with Congenital Heart Defects in Iraq. Before, these kids would just die. End of story. No hope. That’s what would have happened to Pierson. We’re blessed enough to live in the DFW area near three fantastic hospitals that care for kiddos with CHDs. (Pretty sure we were at the best of the three!) We’re lucky enough not to be living in a war zone too. The blog on the Preemptive Love site is pretty amazing too! If you’re looking to tithe creatively this might be something to look in to.

I leave you with a picture of Pierson thoroughly enjoying a bowl of spaghetti with sauce that we (P and I) made ourselves. It has all kinds of veggies in it and flax seed. Gotta get as many nutrients in this kid as possible. He has some kid-hood to live to the fullest.