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"