The Man's Man

Dear Tristan,

I haven't written a blog for you in a long, long time.  Something I  regret. There are many moments I want to capture, bottle up, and remember forever.

Today, you were watching a Christmas DVD with music. There is a particular song you love and listen to it over and over again.  I grabbed the DVD remote and called you over to me (after repeating the same song for the 30th time in the last hour). Taking your hands I showed you how to back the DVD up by one chapter (song). The smile on your face was priceless. I could see the wheels turning in your head as the smile got broader and broader--and turned into a giggle. A valuable lesson was learned. He, who holds the remote is king! Tristan with a remote in his hand; truly the Man's Man.  I didn't teach you to fish, higher mathematics or even to cook your own first meal, but you'd think I had by your reaction.

When you are old enough to read this, please feel this...There are moments when you can push every single envelope; stomping on every single patience button that your mother has, but one thing you must know....

I enjoy YOU. You make my heart smile.

I love you always and forever,

Mom

Happy 4th Birthday

God is so good,
 God is so good,
 God is so good,
  He’s so good to me.

Do you remember me singing this to you? Do you remember how I would rub my growing belly and sing? I sang this to you almost every day--sometimes crying as I wondered what the future would hold for you. 

It is hard for me to fathom that another year has gone by already. Wasn't it just yesterday that you proudly wore your "3" shirt on the cruise ship as we celebrated your birthday? Where has the time gone?!

I am amazed how much you have grown and learned over the past year. You not only met many of the desires I had for you, but exceeded them too. This past year I heard you call me "Mama". Something I had longed to hear for the past 2 years and it was as sweet as I imagined. Daily I am amazed to hear you tell me what you want. I watch as you verbally express your desire to play, eat and go outside. Your willingness to try to speak has increased ten fold. We nervously sent you to preschool and watched it be one of the best decisions we ever made. It was a rough transition at first but you went from crying on the way to school to running into the classroom. All I have to say now is, "time to go to school" and you're out the front door. I love that you sing songs with us or hum the tune if the words are too hard or too fast for you. Tristan, you make us laugh. You make us proud. You make our hearts smile.

There will be new challenges ahead. A new school in the Fall, new teachers, new therapists, new schedule. There is a rough road ahead with the Fontan looming before us that will bring painful experiences, new faces, new medications, and a different environment. Believe me when I look into your eyes and say, "I know". I know how hard it is going to be for you. I know how brave we will ask you to be. I know scary it will be. This I promise....I promise your father and I will be with you every step of the way. Always encouraging, always guiding and always loving you.

Indeed, God is so good. We look forward to what he has in store for you in the year ahead. 

I love you always and forever.

Happy Birthday my son.

Mom

Going Dopey

Dear Tristan,

This post is specifically for you. 

Dopey.  One of the seven dwarfs in the movie "Snow White and the 7 Dwarfs". The cute lovable guy with the big ears, purple hat, who doesn't talk. He is silly and playful. Ask anyone to name the 7 dwarves and I promise no one forgets Dopey. Some may say he is not the brightest dwarf, he was actually written to be toddler- like in personality.

Every single day I ask you to be brave when I know you are anxious. The world can be a confusing and scary place with unfamiliar people, loud sounds, bright colors and words you don't understand.  I ask you....no I DEMAND that you learn to tolerate it and like it. I know it's hard, Tristan. I know it's asking a lot of a 3 year old.  I know learning to talk is frustrating and hard for you. It takes more courage to utter one sound than I will truly ever know.

I compare the learning to talk to running a marathon. No one gets up and runs a marathon over night. It takes months and months of training and discipline. It takes having good days with great long runs and also horrible days when 2 miles seems too far to ask my legs to move. I am not the best runner; I don't have the ultra thin body that elite runners. I wish I did. I wish this were easy for me. Instead it take a lot of effort for me to run 26.2 miles.

I decided to run the Dopey Challenge. I ask you every single day to be brave.  To try to talk, to eat new foods, and to tolerate unfamiliar places. I want to prove that I can be brave too. Running 48.6 miles in four days seems almost unachievable. I get anxious. I get scared. I worry about failing.  I worry that I won't cross the finish line. I worry I will let people down. All the fears and anxiety you have about talking, I have about extreme distance running. 

But I will do it for you. 

I will be brave for you.

Love,

Mom

Happy Anniversary

The Toast my sister gave us at our wedding reception.

Not a fluke of nature but a miracle of God

A small egg split, two peas in a pod.

Who would have thought only God really knew

One half was me, the other half, you.

Men you'd see and later meet

All your dreams they did not complete

In midst of heartache, you couldn't foreseen

Your true love was coming, his name would be, Gene.

You married each other, united in love

Starting a journey you both can be proud of

Two individuals, one life to lead

With Christ as your center, I know you'll succeed. 

A partner, a helper, a rescuer, a friend

A believer, a forgiver, all with no end.

Those and more you have been there for me.

You'll be for each other, I guarantee.

Ann, it's time for me to let you go.

Gene, my biological half becomes your whole.

So congratulations and I know you won't laugh

When I say Ann is truly our better half. 

For the record, I have the greatest encouragers and cheerleaders in my twin sister and husband. Without them, I would be lost.

Happy Anniversary, Gene. It's been quit the pukey week, but I love you more for it. 

Love, 

ME

I love you more than I love my dog; more than I love my frog. ;-)

(Did I fail to mention that we don't have a dog or a frog?)

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?

St. Louis, ST, OT, and GI... Oh My!

Happy Autumn! Where did the time go? Hard to believe October is just a few days away. I am sure most of you are enjoying the changing leaves and the cool crisps evenings that come with the season of Fall. 

Tropical Storm Isaac (later Hurricane Isaac) cooperated and allowed us to attend the family reunion in St. Louis for Ann's maternal side of the family. It was a whirlwind trip over Labor Weekend but well worth it. We were able to introduce Tristan to his great aunts and uncle and also to some cousins too. Ninety percent of the family members were able to make it and those who couldn't were missed and thoughts of often throughout the weekend. Unfortunately Tropical Storm Isaac followed us to the midwest, so many of the outdoor plans were canceled. No matter! It was a great weekend anyway. We plan to make a trip back to St. Louis July 2013. The Lutheran Church's Synodical Convention will be held there next near, so we hope to be back for that.

I've had several people ask me about how Speech Therapy is going. In a word, "fair". Could it be better? Yes. Could it be worse? Yes. The key is Tristan, himself. And yes, I'll admit that we could work a little harder too. Tristan has developed such a fear of any kind of healthcare provider that his defense mechanisms are extremely heightened. He distrusts almost everyone to the point that quickly spirals into a "fight or flight" response. Just driving to the doctor's office or therapy office causes Tristan to get anxious. He looks out the car window and watches the route we are taking. If it appears to be the same route, he starts to breathe quickly, starts to whimper. Next thing you know he is gagging and vomiting in the car. The other day we were driving to the store. It was the same route. Before we could even get to the store, he threw up. We had to turn around, returned back home to change his clothing and then went back to the store. That's how crazy his anxiety is. No matter how many times we said, "We are going to the store", he could not calm himself down. Don't get me wrong....it is getting better. The last two times he went to OT, he cried less than 90 seconds and went to play. Truthfully, we laughed  (crying was not an option) because Tristan got himself all worked up, but within 20 seconds was happily playing with the therapist! All that drama in the car for nothing! 

I am learning that language is going to come slowly for Tristan. He is just not that interested; no matter the reward. For example, yesterday I brought out a laundry basket. We hide them in our house because Tristan LOVES getting a ride in a basket. He squeals with laughter and throws a huge fit when you put it away. My back starts to hurt from carrying a 25 lbs child in it, but he doesn't care; he wants another ride. Anyway, I brought out and knew immediately he would want more and more and MORE rides. So I put him in it and gave him a quick ride. Placed the basket down and asked, "More" or "All done"? Giving him a sign for each word. I asked him 3 times and then took his hands to form the sign more when he fused because I wasn't picking up the basket. I forced his hands to make the sign and said, "Okay! I'll give you more!" and gave him a ride. Gene and I did this for over 45 minutes. Do you think he ever made the sign for us without us having to do it hand over hand? NOPE. When we just sat there waiting for him to give us a sign, he would just look at us blankly or start playing with the sides of the basket. That is how stubborn my son is. Later, we moved to the water hose outside. As some of you saw from the video on Facebook, he LOVES feeling the water on his hands. Once again, we did the same routine...."More or All done"?.  We did this again for 30 minutes. Never got him to sign it once.  We stopped spraying the water for him, so what did he do? He walked away to explore something else instead! Patience....he is teaching us patience. 

Today we went to see his GI specialist. The last visit was 3 months prior so weight gain and height increase was to be expected. During the 45 minute car ride down to West Palm Beach, Tristan got anxious and whimpered. Thankfully, he never threw up. Got into the office and started to cry. He really didn't like to be weighed but did not get to the point of vomiting. While we waited for Dr Stephens to come into examining room, we played with Tristan on the floor with some toys we brought and feed him some cheese and crackers. Here is the irony....When Dr. Stephens walked into the room, he started to cry. It lasted maybe 30 seconds. Dr. Stephens has a son about 9 months younger than Tristan. He is really great about not touching Tristan for the first 15 minutes of any exam. He always asks us his questions first and gets all the info he needs. So here, Tristan was anxious all the way down to the medical office, he cried when he got to the office and for 30 seconds when Dr. Stephens walked into the room....then what? He started playing with Dr. Stephens. Tristan would walk up to Dr. Stephens, look at him, squeeze his knee, and run across the room laughing. Over and over again Tristan did this. It was hilarious. Tristan works himself in anticipation of something but once he's there, he's fine.  We are hoping this is a short lived phase and it will get better.

His weight today was 25 lbs and 3 oz. Height 34 and 1/4 inches. Dr. Stephens was happy with his wt and ht ratio. He would like to see Tristan eating more solids by mouth but okay with how Tristan looks. G-tube continues to be out of the question and we won't return until January for another visit unless we see weight loss or anything of concern.

Tomorrow, Amy (Ann's sister) comes into town for a quick visit. I know Ann is looking forward to it and it will be another chance for Tristan to get to know his Aunt.

As always, we thank everyone who asks how Tristan is doing and we appreciate all the love you show us and him.

Visit to Miami Children's Hospital

                           (Hanging out in the waiting room)


We just got back from Miami Children's Hospital about an hour ago. Two out of three members of the Johnson Family are napping from the lack of sleep last night. We drove down on Thursday evening and stayed in a hotel because of the early morning appointment. Tristan never does well sleeping away from his own bed, so his parents not either. Thankfully, that is the worst thing I can say about the Cardiology and Dietician visit.

Just so we are clear, we went to Miami Children's to get their thoughts on Tristan's cardiac function. There is nothing that had us extremely alarmed or worried. As parents, we were getting conflicting impressions of Tristan's weight gain and need for intervention. Our local Cardiology office has 5 Cardiologists that rotate seeing the patients. One cardiologist was concerned about the slow weight gain and suggested a G-tube be placed. Another cardiologist in the office thought quick weight gain would be too hard on Tristan's heart and wanted us to slow it down. The GI doc wants to avoid the G- tube at all cost and felt Tristan was in a good place. We went to Miami to see their cardiologist because in the end, they will make the final decision when the Fontan (3rd surgery) will be done. They will be the ones performing the surgery, so their input is important. And finally, they had not seen Tristan since he was 6 months old. We decided it might be good for them to be updated and have a current medical status.

After a long day of sitting at the hospital, we came home knowing that Tristan is stable. In some ways it feels like the trip was not necessary because no recommendations were given, but at the same time we have validation that and an "estimated" timeline. With clothes on and no shoes, Tristan's weight was 25.4 lbs. He is in the 10th percentile on the growth chart.  Looking at the weight and height ratio, Tristan is at the 99% mark. That means he is perfectly proportional. The dietician (the same one he had while inpatient), basically said to keep doing exactly what we've been doing. Keep encouraging the po (by mouth) intake and supplementing with the Pediasure 1.5. She thinks the G-tube is completely unnecessary and way over the top. She would only suggest the G-tube if Tristan dropped below the 3rd percentile for weight and height. Ann also asked about the Pre-Albumin from July. It was low despite the high protein from the Pediasure 1.5. Melissa (dietician) basically laughed it off. Said that the half life is so fast that without a series, the lab is worthless in regards to his nutrition status.

Tristan was completely uncooperative to get an accurate O2 sat, blood pressure or EKG, but our local Cardiologist had sent down the films from the Sedated ECHO we had in July. The films were re-read by the cardiologist at Miami Children's Hospital (MCH) and the impression is that the heart is stable for an HLHS child. There was nothing they saw that was alarming. Right now, they are in no rush to do the Fontan. Unless Tristan shows signs that he needs it, the 3rd open heart surgery won't happen until closer to 4 or 5 years of age. Something drastically would have to change for the surgery to come sooner.

So in the end, Dr. Dobrolet said to keep doing exactly what we are doing. She had no recommendation of changes.

We did get the chance to see some of Tristan's nurses on the cardiac unit. Tristan wasn't happy to be surrounded by nurses, but everyone remark on how good Tristan looked: his coloring, his size, his weight. I wanted to take some pictures of Tristan with them, but that was not going to happen. I was only able to get one picture of Tristan and his primary nurse Dafenie, but Tristan is crying and it's not very pretty. 

Now onto better things.....we're all going to St. Louis next week for a family reunion on Ann's maternal side of the family. We look forward to seeing everyone and I am sure pictures and another updated blog to follow. 

Happy 10th Anniversary

Dear Gene                                                August 4,2017

           Ten years ago today I said, "I do". Ten years ago I couldn't fathom what today would be for us. Ten years ago at our reception I remember dancing our first dance to "Remember When" by Alan Jackson with the entire wedding party. As we danced I dreamed of what our remember whens would look like....just in the past 5 years since our 5th anniversary so much has happened.

Remember when...sending Tristan to school and the intense anxiety of letting him go.

Remember when...Tristan said his first complete sentence of "Hi , Mom!". 

Remember when..driving to Walt Disney World on a whim was easy and effortless.

Remember when...we ran a half marathon in the pouring rain at midnight.

Remember when...our days were spent driving to therapy and doctor appointments.

Remember when...we sold our house--just thinking change was coming soon.

Remember when...we moved into the rental I despised. 

Remember when...we packed our entire house for a move to Texas. Scrambling because the movers showed up a day early.

Remember when..The Fontan Surgery caused sleepless nights and worry.

Remember when...bird sitting end in disaster. 

All these remember whens and more...not a single one of them I would want to take back. They were all spent with you and couldn't imagine my life without you. Thank you for the best 10 years of my life.  I look forward to the many years of "remember whens" to come.

Happy 10th Anniversary Gene.

I love you always and forever,

ME




Dear Gene                                               August 4, 2012

         I can hardly believe 5 years has gone by already. Little did I know on August 4, 2007 what an adventure it would be and I dare say there is plenty of adventure left. We dated for 2 years before we got married and I knew you very well before making the life long commitment, but I truly believe marriage is a leap of faith. We dip our feet to test the waters but then dive in head first with marriage. God was on my side when he planned our paths to meet ---and I am forever grateful.
          I knew you would be a wonderful husband and companion. I am astounded at what a fantastic father you are. Tristan is one lucky boy to call you, "Dad". These past three years have been particularly adventurous and stressful with the pregnancy and birth of our son. If I didn't have you, I truly would have a mental breakdown. No one else in my life understands how overwhelming HLHS can be. No one else goes to every single pediatrician, cardiology, GI, and therapy visit with me. No else knows the defeated and complete failure feeling you get when one of the doctors or therapists does not see the progress they wanted; giving a scolding look and asks that you try harder.  Nor do they understand the frustration when one contradicts what another specialist says. Any goal that was set and achieved takes hours and hours of work, sweat and tears, but no one allows us to celebrate for even a second because there is a new goal to meet. Our victory laps are short lived. Very few people know how hard it is to keep going; to keep trying. No one else in my life understands how it feels to be told you can't allow your baby to cry or he will die. No one else in my life understands what it is like to watch your child cry so hard that he arrests right before your very own eyes and you stay up until 2 am planning his funeral just in case. No one else knows the anxiety you feel about exposing your child to day cares, play groups and public places because a common virus or stomach bug could land your son in the ICU. But at the same time you know we want our child to live a normal life as possible. Without you Gene, I'd be insane. You are a 100% partner and husband. It never enters my mind to question whether you'll be here for me. When I feel like a failure as a pastor's wife and parent from all of the pressure, I know you have my back. Without having to say a word, I know you truly understand. And that means the world to me.

I've said it before and I'll say it again...

I am amazed how much you love me. When I say the words, "I love you", I really do mean it. Our journey is young but has been adventurous. I cannot imagine enduring these past five years with anyone but you. I truly look forward to spending decades of beautiful scenery with you. Filled with hills, valleys, road detours, blinking yellow lights to caution us to slow down, and bumps in the road to remind us how smooth our ride had been. If we ever get turned around and it seems like we've lost our way, don't be afraid. I promise I will sit by the roadside with you. I will take your hand and retrace every step we made until we figure out where we went wrong. Together we will plot out a new adventure and forgive each other for all the wrong turns we've made. At our journey's end our bodies may fail and our minds might betray us, but when I look into the rear view mirror your reflection in my heart will be the man I pledged my life and love to on August 4, 2007.

I love you always and forever.
Happy Anniversary, Gene.

Love,
ME






I will Be here - Steven Curtis Chapman

ECHO Results

Seriously was not happy. He just woke up from sedation in this picture.

As some of you read on our Facebook posts, Friday's ECHO was a bit of a disaster. We had pre-registered and paid our coinsurance prior to Friday morning with St. Mary's in West Palm Beach thinking it would speed the admission along. Not so much. Tristan had been NPO (nothing by mouth --food or drink) since the evening prior around 8:30 pm. Of all mornings, Tristan decided to wake up at 4:30 am. He spent the next 5 hours crying for water or something to drink. We arrived at 9:30 as ordered with the hopes it would happen quickly. We sat in the outpatient waiting room for 30 minutes before being called back into the examining area. Just as we were about to get the pulse ox on him, the lights went out. Fifteen seconds later the generators kicked in, but then the anesthesiologist refused to give Tristan sedation while the outpatient hospital building was working on generators. Long story short, he finally got sedated (took 4 of us to force the medicine down his throat and prevent him from vomiting it up) and had the hour long ECHO at 11:45 am. He got a very rude awakening with a needle being stuck in his arm as we were trying to get some lab work on him too. He finally got to drink water shortly after 1 pm and we were on the road home around 1:30 pm.

I got the result this afternoon. The ECHO looked fine. The Tricuspid Valve Regurgitation (TR) remains mild to moderate. No change. They had a hard time getting a clear picture of the "connections " (Superior Vena Cava to the Pulmonary Artery), but felt there were no issues. We were hoping they would stop the Digoxin, but the decision was to keep Tristan on it based on the TR. Blood work came back okay. Tristan's electrolytes were all within normal limits, but his liver enzymes were elevated. The cardiologist said this is a "normal" side effect from the heart condition. The liver is not getting enough blood flow so certain levels show elevated (liver enzymes). For the medical people out there, the AST was 75 and the ALT was 87. They also did a pre-albumin (looking at nutrition status) and it was 15 (normal is 22-40). The pro-BNP (Brain Natriuretic Peptide) came back at 223. The pro-BNP is not something to get too excited about. There really is not a lot of literature out there that says how this number correlates to children vs adults.

Next step? Ann called Miami Children's Hospital and is awaiting to hear back from them. We've been playing a sort of phone tag with the cardiology department. There was some question whether Miami would want to do their own sedated ECHO, but Dr. Debrolet said she would accept the latest ECHO and asked we have them send it down. We think we will have an appointment either August 17th or 24th. Remember, this is just so they can get a feel for Tristan. We have not seen the cardiologist there in close to 2 years. We want their thoughts on Tristan weight, heart status, and what they believe will be the timeline for the 3rd opem heart surgery. So don't think Tristan is in a crisis mode or that we are seriously worried about something. We are not worried ---but always concerned nonetheless. 

Between now and the visit to Miami Children's, we are eagerly awaiting a visit from G&P Johnson and Aunt Kathleen. I am sure it will be a fun week for Tristan to see his grandparents and aunt.

Thanks for reading and as always, we are truly grateful for your prayers.


Updated at 10:58 EST: 


Appointment at Miami Children's will be August 24th at 9:45 a.m. Will see cardiologist and then see the nutritionist there also afterwards. 

The Happenings and doctor visits

WARNING: THIS IS A LONG POST

It's been an exciting couple of months. And the end of May Ann's Mom and Step-Dad came into town for a long weekend. It was great to see Tristan take to them so quickly and loved to be around them. I am fairly certain the feeling was mutual and both parties look forward to seeing one another again in September. 

Next, Tristan had a "big boy" milestone of getting his first real hair cut (outside of mom and dad cutting it when he was sleeping). The woman/hair dresser was so kind and understanding. Tristan sat on Gene's lap while Ann tried to keep him distracted. Distraction was a HUGE fail. Tristan is VERY defensive to anyone touching him that he does not know. The hair cut took all of about 15 minutes but he managed cry himself into hysterics and vomit all over Gene, himself, the chair and the floor.....3 times. The lovely ladies tried to make Tristan happy by offering stickers and lollipops, but Tristan wasn't having any of it. The end result was the revealing of a little boy under all that shaggy hair, which was nice to see. Although we will be more than happy if we don't have to do that again for another 2-3 months.  

Father's Day was a nice quiet Sunday. While Tristan slept we got our annual Gene and Tristan hand picture. Tristan is not so cooperative so we had to resort to doing during nap time. Makes me look forward to our annual Thanksgiving card--NOT. Oh well, maybe by the time he is 2.5 years old, he'll be more cooperative. (Yes, I am snickering too).

A week ago we were in Lake Mary, FL for the FL/GA District Convention. It was a very rainy weekend thanks to Tropical Storm Debby so there was little sight seeing by Ann and Tristan. The weekend went by so fast that Ann was not able to see many of the Pastor Wives (PWs) that she wanted to. Perhaps in October when we go back for another conference there will be more visiting. On a positive note, Ann got to share how she and Amy came to the US and give a cheer for Lutheran Family and Children Services. If it made one person realize the importance of Lutheran Services and Outreach, it was worth it!

And finally...the dreaded doctor visits. We had a cardiology visit this past Friday. Tristan had a couple of days of 4+ vomiting, poor urine output, and not even wanting water (which he loves). His energy level was good and his mood was not poor so we kept an eye on him. After a couple of days of this, we got a little nervous and called the cardiologist. We already had the schedule appointment for Friday, so the decision was to keep an eye on him and bring him in for the appointment. To say that Tristan was a mad man is putting it nicely. He started screaming from the moment we walked into the examining room. We could barely get his weight and height. Getting a 12 lead EKG was out of the question. They started putting on the leads and stopped because Tristan started vomiting from screaming so hard. Bottom line, the cardiologist was happy with his heart function from what he could tell. His O2 sats in his hands were 83-84% on room air. The cardiologist was happy with the way he looked but once again talked about Tristan's slow weight gain. The third open heart surgery is always looming and we know we need to get Tristan to the 30-35 lbs mark. Dr. S talked about perhaps putting in the G-Tube. It is completely backwards from the norm and he admitted it. Most babies are given G-tubes and then it is removed around 2-2.5 years of age. Putting in a G-tube in a 2.5 year old is almost unheard of. He even admitted he could not remember the last time they suggested it with a patient at Tristan's age. Dr. S knows we see a GI doctor down the hall from his office but suggested we get a second opinion from Miami Children's. Our current GI doctor wants us to avoid the G-tube as long as Tristan is gaining weight, no matter how small. Dr. S wants to see if another GI doctor agrees.

On another note, our Speech Therapist quit working for Early Interventions, so we are awaiting to hear about a new Speech Therapist. There is a woman who is known for working with children that have oral feeding and speech delays and working wonders. The bad news is that she is out of net work for Blue Cross Blue Shield. So the process of getting Tristan in to see her is going to take some time with all of the paper work involved between insurance and the state. UGH.

Today, Tristan had his scheduled GI appointment. Truthfully we were nervous. Our hope was for Tristan to be around 25 lbs. Weight today was 23 lbs and 2 oz. Height was 33 and a quarter inches. He gained 1 lbs and 1/2 inch in height for the 10 weeks. I was sure Dr. Stephens was going to ream us. The complete opposite happened. He felt Tristan was gaining and looked proportional. He felt the slow down of weight gain is normal for a 2+ year old and was happy with it. We talked about trying to use Benecalorie to add more calories and working on getting Tristan to eat more by mouth (solid food wise). Dr. Stephen's did not bring up the G-tube. We had an open dialogue about expectations of weight gain with two parents that are no giants by any stretch of the imagination. Wanting Tristan to be 30 lbs right now might not be realistic and Tristan could be fighting genetics. Dr. Stephen's agreed.

So what's next?? 

This coming Friday, Tristan has a sedated ECHO scheduled. If the ECHO looks good, we foresee him coming off of the Digoxin until after the 3rd open heart surgery. It would be nice to have one less medication to force down him.

After thinking long and hard about it, we think we are going to make an appointment with a cardiologist at Miami Children's.  Why? Just so that someone down there has a look at Tristan and is up to date on everything. They will be doing the 3rd surgery so it might be nice to see what they have to say. How do they feel about Tristan's weight? What time table do they see for the Fontan? If they are not happy with the weight gain, then we will move forward to seeing a GI doc for a second opinion in Miami. Ann is going to wait until after the ECHO on Friday to make the appointment. The hope is that the ECHO films can be sent down to Miami Children's prior to the appointment so Tristan won't have to go through another one and they can have all the info needed to give us a good impression of Tristan's heart function.

We'll be sure to update again once the ECHO is done and when we have the results.