Cardiology Appointment

I admit it. I was nervous. Very nervous. I had a strange sinking feeling that cardiac wise, things have been going too well. We made it through the cough and cold season without a hospital admission, no recent ER visits for Evel Knievel imitations and acid refux appears to be fairly under control. Our "normal" has been just that; normal. So really....something has to go wrong, right?

Plus, Dr. Sharron always refers to Gene and I as "one of the nicest set of parents ever", so really....T needed to blow that facade and give her more accurate adjectives like "naive", "foolish", "inexperienced" and "out of their minds". 

BUT.....

TRISTAN DID GREAT!!!

This was the first visit in about 2.5 years that we got a 12 lead EKG done without him screaming bloody murder through it. For once it was ACCURATE. His weight is 31 lbs (diaper and shorts on only) and his height standing is 35 inches. We also got a blood pressure of his arm AND leg. Got his O2 sat of 84% while being calm. Yes, he did whine and cry a little with the sticky lead pads and he did not appreciate having his heart listened to, but he calmed down.  He even "talk" to Dr. Sharron and calmed down enough to play while we talked with her about how T was doing at home. 

AND THE BIGGEST SUPRISE??? T was so cooperative we got an echocardiogram done today in the office. He did sooo good.  He laid there for 20 minutes with the help of Gene and I keeping him calm. He whined every once in a while but for the most part he laid there and allowed the technician to get her "pictures".

We had to add the autism diagnosis to the chart since the cardiology office had not seen us since January. This came up because there is always the question of normal development and hitting appropriate age related milestones. Dr. Sharron guessed that his autism might be on the milder side since he appeared to be socializing with her and calmed down fairly quickly. Do we mention how much therapy (ST/OT/ABA) it has taken to get him not to have a screaming nervous breakdown in an MD office??

So the Fontan timeline question....

T appears to be fairly stable. He is gaining weight, color looks good at rest, O2 sats are above 80%, and is active. Right now Dr. Sharron feels we should hold off at least for a year...maybe longer depending on how T does. The echocardiogram showed mild-moderate Tricuspid Valve regurgitation and really no change. She did voice some concern or maybe added thoughts regarding T and the Fontan. Dr. Sharron said she sees regression in behavior post Fontan in most of the children. So whatever gains he makes over the next year with speech/language, increase of accepted foods and textures, potty training and etc, will take major steps backward after the surgery due to the psychological trauma of open heart surgery. She thinks the older we get T, the less regression and PTSD we will see. The hope is that we will be able to explain things more and fearing less. So the Fontan could be 1-2 years away.....it all depends on T's heart and how long it can handle this circulation.

As we were leaving, she wanted to do another pulse ox reading. T was running around the office playing (seriously, that is how calm & happy he was acting). After running like a madman, his O2 sats were 75-76%. Since they did not dip down below 70% with him breathing hard from the exertion she was happy with it. She does plan to let the Cardiologist at Miami Children's know just in case they have any concerns.

So, next Cardiology visit is in January 2014. Yippeee!!

To The Members of Grace Lutheran Church

Dear Members of Grace Lutheran Church,                                                July 2, 2013

Five years ago today at 9:06 pm, we pulled off of I-95 at St. Lucie West after driving 13 hours from Gatlinburg, TN.  Excited and exhausted we checked into the Marriott hotel and grabbed something to eat.  After four years studying at Concordia Theological Seminary to get a Masters in Divinity, this was it.  It was the first time we laid eyes on this town. We had rented a townhouse, ordered the phone lines and cable all without ever seeing the town in person. Welcome to Port St. Lucie.

Over the past five years I have not forgotten.  I remember.

I remember driving up to the church and walking through the doors to Yolie and Ron with Claren being Claren…. doing things to keep the church running without anyone knowing. After a small introduction, we walked out to our car to Chuck and Janice making their way in to fold the bulletins. What were Janice’s first words? “Welcome to Grace. We hope you stay for 10 years.”.

I remember the Welcoming BBQ on the 5^th of July. We came home and sat down trying to remember all of the names and putting faces to them.

I remember the Ladies Tea Party thrown in my honor. The fun games, the paper theme; including Leigh’s church made out of paper towel rolls and toilet paper. It took two whole trips to bring home all the lovely gifts, but the memory of the all the ladies are a hundred fold. 

I remember the town meetings with members welcoming us to their home. There were lively discussions of who we were and where Grace Lutheran Church had been in the past. Driving home once again, trying to remember all the names.

Those are just a few of the memories. There are hundreds of them.

You, the members have seen so much also. We have evolved & grown. Young and enthusiastic you've weathered both good and bad changes. Some turned out to be better than expected. Others are still being debated. We came in as newlyweds about to celebrate our 1^st Anniversary. You watched us grow as a couple. You celebrated as we announced my pregnancy.  You cried with us when we found out our son had a severe heart defect. You prayed with us through 9 months of pregnancy and 6 months in the ICU. Your understanding and love was overwhelming and continues today.

I remember the first Sunday we brought Tristan to church. We told no one we came home from the hospital. Gene started the service with making announcements; including the fact the Tristan and I were there. I remember the gasp, as the entire the church turned to the entrance of the sanctuary. I walked to altar so everyone could see him and the entire congregation broke into song. They sang the Common Doxology to my son.  Praising God for the blessing of Tristan being home. I tear up just thinking about it.

You watched us buy our first house and came over to help us paint.  I look at our walls and each wall reminds me of a member cutting in and painting---and repainting. Some coming straight from work. Others at our house for 8 hours. We could have never done it by ourselves. 

I was told that your first Call (church) would always hold a special place in your heart in a lifetime of Ministry.  I believe it is true. Whether we are here for 20 years or for 6 years, each and every member has meant the world to us.  I still remember Judy, Alberta, Jean, Norm, Tom, Hank, George, Susie, Walt, Bill, and Jenny.  Gone but not forgotten.

With grateful hearts with thank and praise Him for His church and we ask him to continue to lead us and guide us. May Christ always be our center.

Thank you Grace Lutheran Church. Thank you for trusting us, leading with us, forgiving us, worshiping with us, and most of all, for loving us.

"The Church's One Foundation"
by Samuel J. Stone, 1839-1900

The Church's one foundation
Is Jesus Christ, her Lord;
She is His new creation
By water and the Word.
From heaven He came and sought her
To be His holy bride;
With His own blood He bought her,
And for her life He died.

 Elect from every nation,

Yet one o'er all the earth,
Her charter of salvation
One Lord, one faith, one birth.
One holy name she blesses,
Partakes one holy food,
And to one hope she presses,
With every grace endued.

The Church shall never perish!
Her dear Lord, to defend,
To guide, sustain, and cherish,
Is with her to the end.
Though there be those that hate her.
False sons within her pale,
Against both foe and traitor
She ever shall prevail.

Though with a scornful wonder
Men see her sore oppressed,
By schisms rent asunder,
By heresies distressed,
Yet saints their watch are keeping;
Their cry goes up, "How long?"
And soon the night of weeping
Shall be the morn of song.

Mid toil and tribulation
And tumult of her war
She waits the consummation
Of peace forevermore,
Til with the vision glorious
Her longing eyes are blest
And the great Church victorious
Shall be the Church at rest.

The Lutheran Hymnal
Hymn #473
Text: Eph. 2:20
Author: Samuel J. Stone, 1866, cento
Composer: Samuel S. Wesley, 1864
Tune: "Aurelia"

Happy Birthday, My Son

Dear Thirteen Year Old Tristan.
Next week is the opening production of your 7th grade play. You won one of the supporting roles and have been spending weeks rehearsing your lines. Pulling out my video camera, you started begging and pleading to not embarrass you. No other parents would be video taping you argued and really it wasn't a big deal because essentially you only had about 40 lines. I admit I gave you a lame canned response that I told myself I would never say when I was your age. Something about how it was my God given right to embarrass you. Truth is, I know something you don't understand right now. Some day you'll pull this video out and play it for your own son. You'll proudly proclaim, "This was me when I was your age!" and quietly thank me for not giving in so long ago. You think saying some lines in a play as no big deal right now. I see it as an achievement I once thought would never happen.

Dear Thirteen Year Old Tristan. 
I remember a little boy who had no words. 
And although you have little memory of it, I remember the frustrated child who could not get his wants and desires understood by me. I recall the tears, meltdowns, therapy visits and the hard work it took just to get a single word to cross your lips. I often wondered if my child would ever look at me and call out, "Mom". 

Dear Thirteen Year Old Tristan.
It seems like every couple of days we have the same discussion about your hair. It has grown so long that I can barely see your eyes. I bite my tongue as to not make snide remarks about the need to borrow my barrettes and pony tail holders. You've insisted this shaggy look is cool. I must admit, when I chaperoned your class trip every 7th grade boy looked alike. The thought ran across my mind, "Take it from someone who had sky high bangs that took a can of hair spray a day to keep them up, you're going to regret this look some day."

Dear Thirteen Year Old Tristan.
I remember your first hair cut shortly after you turned two. 
Your father had to hold you on his lap and practically had you in a head lock. Over a 10 minute period, you vomited on the hair stylist three times; covering she, your father and you with massive amounts of Pediasure. At that moment I questioned how long we could get away with letting your hair grow before someone mistaken you for a girl. Surely, only a masochist would want to do that anytime again soon. 

Dear Thirteen Year Old Tristan.
This past Palm Sunday we celebrated your confirmation. You stood before the congregation and your father to confirm all that was said on your behalf at your Baptism. Standing before your father, he said a prayer for you and announced the confirmation verse you had chosen. I believe the members sitting in front of me and behind me could hear my deep breathes and sniffing as I tried to hold back tears. Confirmation is not the end. It's not a graduation of any kind, rather just the beginning of a faith walk that will not end until you are in heaven. Never forget you are a Baptized child of God. Redeemed by the blood of Jesus and an heir to the kingdom our Heavenly Father.

Dear Thirteen Year Old Tristan.
I remember your father and I sitting down several times to teach you to fold your hands, close your eyes, and bow your head to pray. When we decided to teach you to do this, you could not recite our meal time prayer, bed time prayer or even say, "Amen", but I believed God could still hear the prayers from the heart of a 2 year old child and I wanted you to understand the importance of prayer.

Dear Thirteen Year Old Tristan.
Before you were even born, we knew you had HLHS. At age 2 and 1/2 you were given the diagnosis of Autism.  When you read your annual school report and medical chart, words such as: Hypoplastic Left Heart Syndrome, coarctation of the heart, Tricupid Valve Regurgitation, Autism Spectrum Disorder, Sensory Processing Disorder will be used. Words and terms that will have meaning when we sit down to talk about your medical conditions. I vowed from the beginning I would give you every chance to live and see your greatest potential; whether it was taking you to one of the best surgeons to operate on your heart or taking you to therapies every single day. I was not going to give up on you. The one thing I want you to remember is that it was NEVER a burden. Read this very carefully.... You are one of the greatest gifts God has given me. It doesn't matter to me if you grow up to be a rocket scientist or decide to take the high school equivalency test. My deepest prayer for you is to be a God fearing, Jesus loving, honorable, respectable and kind man. If you grow up to be that, I did my job.

Dear Thirteen Year Old Tristan.
When I look at you, the only label I give you is "MY SON" And I could not be prouder.

Dear Thirteen Year Old Tristan.
This morning you asked me if you could go with your friends to a rock concert for some group I vaguely heard of. I know other parents are allowing their kids to go, but I stand by my decision. I am not a fan of the lyrics and the influence it can have on you. After yelling, "Stop treating me like a little kid" and declaring me the meanest mom in the world, you stomped up the stairs, slammed your bedroom door and turned your radio on volume level blaring. I marched up the stairs after you, ready to pound on the bedroom door and shout over the music, "Turn down the music or you're going to be deaf", but as my fist was about to hit the door, I stopped. Instead I softly whispered, "You don't understand. Ten years went by so fast. It seems like it was just yesterday.....

You were just turning 3.

Happy Birthday, my son.

I love you always and forever.

Happy Easter

He is Risen! Christians all over the world greeted one another this morning with these words. What joyous words they are to all those who celebrate in the resurrection of our Lord and Savior. He bore our sins and transgression on the cross and rose from the dead three days later. He conquered death and devil for us all. God had the last word on Satan's attempt to remove us from God. We praise and thank you Jesus for this salvation! 

This morning started off early for Gene with the beautiful sunrise service at Grace's outdoor sanctuary/chapel. After several days of waking up early, Tristan decided Easter Sunday would be a nice morning to sleep in. Ann had to wake him from a deep sleep at 7:50 am to make it to the 9 am service.

Tristan was visited by the Easter Bunny. He did not care for the singing/clapping hand stuffed bunny singing, "If you're happy and you know it", but once that bunny found its way to the back of the hall closet, all was right in the world again. Tristan is still enjoying the numerous Easter Eggs laying about the house. 

Unfortunately Tristan did not handle the whole church service well , so Ann left with him early. She did get to experience Easter Service at Trinity Lutheran in Fort Pierce. There she heard an amazing sermon by Pastor Bode and listened to a first hand account of how Christ's love changed a life of pain and addiction. There was not a dry eye in the church. How great is our God! 

At the close is a festive hymn for the Easter Sunday. Not a typical hymn for this Sunday, but one I love. For those who attended our wedding almost 6 years ago, it was the hymn the bridesmaids and groomsmen processed down the aisle to as the guests sang it.

HAPPY EASTER!!! 

Bubbles

Bubbles. Something that belongs to everyone's childhood. I don't think I know a single person who doesn't remember blowing bubbles as a child. Little did I know the word, "bubbles" would be the first word that my son would use with reason and intent to identify what he wanted. The word is not articulated well with proper annunciation, but we know what it means. No it was the typical "Mama", "Dada", "Bye-Bye", or "Baby", but that's okay. Doing things differently just makes it more special.

We hope bubbles is just the first of many many words to come soon. Every day I wonder what it will sound like to hear Tristan say, "Mommy, I love you" or "I want Puppy. I know there will be a day when I email my friends and family a video with Tristan saying these words clearly and I smile knowing it will be soon.

I wrote this blog post for you, Tristan. To let you know that I remember this moment in your life. Some day....years and years from now....someone will ask you what was the name of the very first pet you had as a child. Without batting an eye you'll answer, "Bubbles".  You now know son, why as a 5 years old you had a dog that your parents named, "Bubbles".

Happy Reformation Day/Happy Halloween

Happy Reformation Day/Halloween Everyone!

As you can tell, Tristan is Superman for Halloween this year.  We attempted to take him down to a neighbor's house to see them and to test the whole "Trick or Treating" process. It was a NO-GO. My afraid of everyone little guy wanted nothing to do with it.  Oh well, we tried. Maybe next year.

I added some pictures from our pumpkin carving and our Disney World trip. We went to Orlando with Gene's parents and sister for the weekend. It was wonderful time and Tristan loved Disney World. We went at the perfect time. Crowds were down and the weather was perfect. We were able to enjoy it without any meltdowns or fits; not too many people can say that with a 2 year old at Disney World.

Have a safe and fun Halloween!

Breaking A Parenting Rule...and Well Worth It.

Today I broke a parenting rule. You know...the ones that every mother quickly pulls out of their book shelf and declares it the best book ever written on sleep training: Becoming Baby Wise by Gary Ezzo and Robert Bucknam, The No-cry Sleep Solution by Elizabeth Pantley, or Sleeping Through the Night by Jodi Mindell. Yes, I too have all of those books and have read them cover to cover. But this morning I broke The Rule. You know, the one that they say never, ever do. Do not under any circumstance give your wide wake baby/child attention in the middle of the night---no eye contact, no talking except to say "Night Night softly", simply pat them on the back, and walk away.

This morning I woke up to the sounds of the pitter- patter of my son's feet running to our king size bed. I sat up just in time to see him head for Gene's side to pull on his arm. If I didn't know any better, I'd think it was Christmas morning with an over anxious, excited child. Truthfully, it sounded like he had a stuffy nose and was having issues breathing. Gene made one attempt to get Tristan back to bed. We thought he was back down. No sir. This time it was my turn. Laying him in his bed, I tried to get him go back down. I even laid down next to him, hoping he would snuggle up and go back to sleep. My little boy sat up and with a big grin started his happy babbling sounds. WE'RE UP! It's Sunday morning at 3 a.m. Gene has to be at church to do teaching and preaching, which means he needs his sleep. I boldly broke the Golden Rule, took Tristan downstairs to his playroom, made myself some coffee, and then I remembered....

It was almost a year ago when Tristan did this same behavior at an ungodly hour in the morning. At 16 months old, Dad headed off to church while Tristan and I went for a wagon morning ride. Together, Tristan and I experienced our first sunrise. The sun coming up over the horizon reminded me how grateful I was that Tristan made it out of the ICU. He didn't have tubes, cords, or machines to worry about. I could pick my son up and walk around the neighborhood---something I had only dreamt about for the first 6 months of his life. 

And the birth of this blog.

Down in his playroom we played together. We knocked Melissa& Doug blocks down, attempted to work on wooden puzzles and practiced our new matching game. With my hot mug of coffee in hand and partial opened eyes, I smiled. Tristan was exceptionally "verbal" at 3 a.m. His babbling and sounds were almost non-stop and LOUD. I was surprised he didn't wake up Daddy. Apparently everything is pretty darn hilarious at 4 a.m. Tristan had a lot on his mind and was happily sharing it with me. 

It's 10:20 a.m. and you're finally sound asleep. Tristan, Some day you'll read this blog. As your mom I want you to remember something....Whether you are 2,  or 17 coming home from prom, or 21 in college worried about a big exam, or 35 up feeding a newborn son of your own---I will always be happy to sit and listen to you; even at 3 in the morning. These moments are special to me. They remind me how God continues to walk with us --not just in the storm. And. I. Am. So. Thankful.

So never be afraid to smile at me, call me on the phone, or Facetime me at 3 in the morning. I promise those moments will mean the world to me and I will ponder each of them deeply in my heart.

I love you, Tristan Noah Earl Johnson. Always and forever.  

(yawning) Can we just agree not to do this every single morning, okay?