Happy New Year

Gene and Tristan before church service this morning.

It's been a long time since I last updated the Blog. Right after Thanksgiving, Tristan developed a horrible cold that lasted 2 weeks. We then had a lovely visit from Ann's twin sister and sons (Alex, Isaac, and Evan). The night they left, Tristan started vomiting from a viral bug. By Wednesday evening both Ann and Gene caught it too. Thursday morning we were headed to the ER with Tristan due to his lethargy and not acting like himself. After a 3 day hospital admission, Tristan is back to 100%.  The follow up appointments after a hospitalization stay included a trip to the pediatrician, GI doctor, and the cardiologist. Everyone is concerned about Tristan's lack or slow of weight gain. The early talks of a G-tube or some other feeding tube has been broached. We will see the GI doctor again this Thursday to look at Tristan weight. The cardiologist wants a sedated ECHO to get a good look at Tristan's heart. We are scheduled for that on January 17th at 0700 at St. Mary's Hospital. The EKG at the office showed a strange/different PR interval. Tristan's cardiologist is concerned it shows the beginning signs of SVT (Supraventricular Tachycardia). His heart COULD have created a new electrical pathway, so the cardiologist is looking at a possible WPW Syndrome (Wolff-Parkinson-White Syndrome). The good news is that Tristan does not appear to show any signs of tachycardia or WPW. It all could just be a blip on the small EKG strip that was taken at the office; especially since the QRS does not appear abnormal. The sedated ECHO and the 12 lead EKG on 1/17 will give us a more definitive answer. 


Otherwise.....Tristan looks good. He is finally eating more solid foods. He is slowly but surely mastering the whole chew and swallow sequence. It's not great, but it is a whole lot better. The gagging and vomiting at the dinner table has lessened greatly. At most meals, he no longer does it all. The switched seemed to happen on Christmas Eve. All of the sudden he seem to use his teeth to break down his food and swallow. What a FANTASTIC Christmas gift to us!! The hard part is finding foods that are fairly easy to chew and swallow and also has a lot of calories in it! Now, how do we cook high calorie foods without us gaining the weight with him???!!!


We will update what the GI doc says this coming Thursday. We hope Tristan's oral intake of solid foods picks up and he will be able to avoid the whole G-tube talk.

Many blessings to your 2012 year. We pray the coming year is full for joy, love, peace, health and happiness for all of you!

Happy Thanksgiving

As Thanksgiving approaches this Thursday, we want to take time out to wish everyone a wonderful (and safe) Thanksgiving. We have so many things to be thankful for : Family, Friends, Jobs, Health...to just name a few. But most of all, we are thankful for a loving God who gave us His only son. Without Jesus, we would have nothing to be truly thankful for. 

Happy Thanksgiving from our family to yours 

Tristan's Hand 18 months old

The Christmas Season....

Tristan seeing the Christmas Tree 2011

Tristan's First Christmas 2010

I know that we said we would post a home movie of Tristan eating next....and I assure you, it is coming, but tonight we started to put our Christmas tree up. It is not completely decorated yet, but it's  beginning to look like Christmas.  


Amazing the difference in a child in one year. I see Tristan in the Exersaucer and I can barely remember that little guy.  So much growing and learning with a child this age. I am so thankful for all the pictures and videos we have of him. I love seeing the world through his eyes: the wonderment of everything around him. 

Let's Eat!

This past Monday night we arrived home from Texas around 10 p.m. By the time we got everything brought into the house and Tristan ready for bed it was around 11:30 p.m. Our night was short as we had an appointment lined up for the Oral Feeding Program. After two months of waiting there was finally an opening. The appointment was at 9 a.m. and with an over an hour drive down south, we left at 7:15 a.m. This was just an hour evaluation to decide what kind of plan is needed. Taylor, the therapist was very nice and knowledgable. We were given lots of "do this, not that" and instructed to praise when Tristan puts anything close to his mouth and turn away from him when he attempts to push the spoon away. We were given a list of oral stimulation toys to buy and approx 50 pages of ready material. She originally wanted us to come back twice a week but when she realized we were from Port Saint Lucie, she changed it to once a week due to the distance. 


Tuesday evening, Tristan started picking up small Gerber puffs and putting them in his mouth to eat. Even as recent as 4 months ago, we took these puffs and broke them into 3 pieces and placed them in his mouth. Something as small and dissolvable as the broken puff made Tristan gag. Tuesday evening he picked them up whole all by himself and ate them. Each puff took 1-2 minutes for him to gum it, but it was a HUGE step. 


Wednesday evening he ate two Gerber noodles (look like cheese puffs) from our hands. We put it to his mouth and he would bit off a piece and gum it. Tristan still does not understand the concept of chewing. We are busy practicing that with chew toys and stimulation exercises. 


Tonight, Tristan sat at the dinner table (in his high chair) for approx. 35-40 minutes and smashed and ate a baked potato. He only got about 1/10 of the potato in his mouth but he did it all by himself AND he did not gag or vomit. Once again, A BIG BIG change. We are so ecstatic! Baby steps but positive baby steps. We know a child sitting in his high chair eating fist full of pizza, pasta, and p,b&j is FAR off......but we can at least see there is hope.


Here's to hoping Tristan has turned a corner!


Next blog will be a picture of Tristan with a mouth full of food (we hope).

God Bless Texas

View all

Get your own

We just got home from a trip to Texas to visit Gene's side of the family. This was the first time some of Aunts, Uncles and cousins got to met Tristan. It was a busy but fun filled time which included a Missouri vs Texas A&M football game (Hooray for Mizzou) and Gene  got to preach at his home congregation and participate in the new building/church dedication service. Tristan dressed up as a Chick-Fil-A cow in honor of his Aunt Kathleen. All in all it was a wonder trip and we are so glad we got to see so many loved ones.

Playing in Granny Johnson's kitchen

(notice how Tristan crawls and his talented behind-the-back throw)

Remembering a friend

Tom and Carol Coffman with Tristan 6 days post Norwood Procedure

This past Wednesday morning the gates of heaven flew open and our friend and brother in Christ, Tom was taken Home. After three years of battling cancer, God in his infinite wisdom and control decided that Tom's suffering needed to end. Through the suffering and death of God's own son, Jesus, Tom was called "Righteous" and was welcomed to the place that all the saints before us have gone...where the Angels sing, "Holy, Holy, Holy Lord God Almighty, who was and is and is to come!". 

My first memory of Tom is his voice. Call Day informed us we were heading to Grace Lutheran Church in Port St. Lucie, FL. We had already received several phone calls from various members and leaders of the congregation and we were busy planning our move from St. Louis to Florida. Gene was at Concordia Publishing House (CPH) working his part time job for LWML in their shipping/stocking department. The phone rang with the caller ID showing it was a Florida area code. It was Tom. He asked to speak to Gene, which I promptly answered that he was not there. Tom introduced himself as a member and Elder of Grace. The conversation lasted all of around 4 minutes and ended with me giving him Gene's cell phone number. I quickly got off the phone and called Gene to forewarn him that a phone call would be coming from an elder at Grace. I declared to Gene, "I just got off the phone with the nicest person! Extremely friendly and nice!". Friendly and nice....such an understatement. 


Above is a picture of Tom and his wife, Carol visiting Tristan. They made the long 2 hour trip down to meet Tristan 6 days after his 1st surgery. Some day Tristan will look through his photo album from that time period. Upon seeing this picture he will ask me who the man in the picture is......and I am going to tell Tristan that Tom was a man who loved Jesus, loved his wife and son, and was a great friend to us. A man with great character and integrity. A man who could sing a song at the end of a church service and have the members leave crying because how beautifully it was sung. A man who would come up to church and quietly clean or fix something without fanfare or praise. A man, who despite fighting and suffering from cancer found time to pray for you. And even though you will have no memory of Tom, I am thankful he was able to meet you.


There are many other memories I have of Tom, but if I named them all this blog would be a hundred pages long. The most important thing to take away is that the memories are fond.  


It was my honor and privilege to have known Tom.  For having known him, I am a better person. He will be greatly missed by this family.


Yes, we will all see Tom again..... And what a glorious day that will be. 


Amen.

Tristan finally walks!

This is the day we thought would never come. The other day we were joking that we were convinced Tristan would be crawling to Kindergarten. But on October 11, 2011 he proved us wrong. The day prior he was not even taking a single step on his own without holding onto the wall or furniture piece. Just this past Sunday he cruised down the "pew" (chairs) holding onto lovely knees of some of the seated members. They were all kind of enough to smile and talk to Tristan as he "passed the peace". Tristan never ceases to amaze us. The joy he gives us is only slightly expressed in Gene's voice. Every milestone he meets is not taken for granted and we celebrate 100 fold.

Tristan and the Fan

This was for more our entertainment than anything else. We bought an air purifier for our bedroom and Tristan discovered the joy of having the air blown out from the top of it (look at his hair). The video was not shot well by Ann but you'll get the jest. We could not tear Tristan away from it all evening long; it was like a new toy on Christmas morning!

Caught In The Act

Sunrise at Daytona Beach

We spent the last several days in Daytona Beach for the FL/GA President's Convocation 2011. It has been three years since we attended. In 2009 Gene's grandmother passed away and in 2010 we were in Miami Children's Hospital with Tristan. Gene was able to attend some wonderful break-out sessions, see old Sem. classmates and even caught up with President Emeritus Kieschnick long enough to plan a possible golf game when we are in Texas next month. Ann was able to spend time with several pastor wives and their children, walk on the boardwalk with Tristan and enjoy a couple of days off of work. Tristan was introduced to several people that had spent much of 2010 praying for him. It was nice to be able to report all positive things regarding Tristan's health.


While we were staying at the Hilton, Tristan was limited to our hotel room with a handful of his favorite toys. Despite that, he found several ways to entertain himself. Anytime our attention was turned away and the room was too quiet, we knew Tristan was up to no good. See below....

 

The ride home was full of hilarity---at least now it feels that way. An hour and a half into the drive, Tristan got cranky about being harnessed in his car seat. Usually his trusty stuffed dog does the trick. The only problem was that "Mine" (as Ann's mother has named the beloved dog for Tristan) had a battery problem; as in completely dead. Tristan kept pushing on the paws, the ear, and the glowing heart to now avail. Cranky Tristan turned into a screaming maniac. I don't think we have ever heard Tristan cry so hard in the car....and remember we just made an eight hour drive to Destin back in July! It's amazing what an uncontrollable child can do to you....no dinner and a non-stop screaming child made for two unamused parents. We, the sound parents that are supposed to remain calm at all times even started getting frustrated with one another. With tempers flaring we became one of THOSE parents. You know, the ones that stop 45 minutes away from home at a Target in Palm Bay to get three AA batteries for their son's stuffed dog. With a quick grab of burgers to go at Five Guys and fresh new batteries in the singing dog, there was silence in the car. The flood of tears turned into contentment as long as his trusty dog sat on his lap. We never thought we'd become one of those parents that would stop and do anything to get the screaming to stop. And now after a good night's sleep, we can laugh about it.

The Silver Lining

Starting at midnight Tristan was up multiple times last night. No fever, no runny nose, but with his extremely sensitive gag reflex he threw up three times from all of the rolling around in bed. Mom and Dad got next to no sleep and the final wake up call was at 5:00 a.m. Tired and frustrated with his gagging I think I said, "Tristan, please stop!" about 6-7 times as I watched him gag and heave. In case you think I am an insensitive ogre of a mother overlooking that her son might be ill, I assure you this is an every morning occurrence; just not normally at such an early hour in the morning.


We got Tristan up and he was being a "Scooter Brown" (a phrase from his late Great Granny). Nothing made him happy and all he did was lay on our loft floor complaining in the gibberish tone that only a 16 month old can do. Gene had to head to church to prepare for the worship services. Desperate for a change in attitude, I decided to take Tristan for his wagon ride around our subdivision. A stroll around the neighborhood is one of Tristan's favorite activities. As a matter of fact he goes from a  child who is upset, crying and moody into an absolute silent child when in the wagon. He sits there quietly, looking around and takes in everything on our little walks. Truthfully, I was not too excited to go on this walk. My bed was calling my name and the soft pillows were singing me a lullaby.


But then I saw the sunrise...and as we were strolling through my neighborhood, even Tristan seemed to noticed the orange glow in the sky. My first sunrise with Tristan. A year ago we were sitting in the Cardiac ICU awaiting the count down to the second open heart surgery. Back then I could have never imagined having the ability to put Tristan in a wagon without EKG leads, IV pumps, and O2 taped to his face. Everything got put back into perspective. My annoyance with the 5 a.m. rising melted into appreciation and gratefulness.  God saw all three of us through last year's ups and downs and gave me this morning.


Psalm 118:24  This is the day that the Lord has made; let us rejoice and be glad in it.




And incase you are wondering......It's 9:30 a.m. and Tristan is now sound asleep.

Napper Time!

I am convinced the world would be a better place if everyone got a 2 hour siesta every day. Less tempers flaring, less road rage, a little more kindness, and a lot more patience.  My mother can contest that I was a child who decided naps were not needed at an entirely too young of an age.....I think I was around 2 years old. Luckily, Tristan has not followed in my footsteps----yet.  Now I wish someone would make me take a nap. There would be no twisting of these arms I assure you. Every Sunday afternoon I practically beg Tristan to take a nap that lasts longer than one hour. So if you get a chance to take a nap---take one for me. I could use one.

The weight is on!

17 lbs and 14 oz. That's what the scale showed on Friday when we took Tristan to the GI doc.  Pediasure 1.5 appears to be doing the trick---almost a little too well, might I add. In six weeks, Tristan gained over 2 pounds. Sound fantastic, but as always the cardiac issue always creeps up in our minds. Is the weight gain real weight? Or is it edema (water weight) from the decrease in Lasix? After our last Cardiology appointment on August 10, he went from 6mg of Lasix twice a day to 7mg only once a day. That is a big difference! The fear is that the extra fluid could make it difficult on Tristan's heart. Luckily, we don't see any puffiness in his eyes, hands, or feet so we don't think it's water weight. Truly beautiful words after a complete stand still from 9-12 months of age: WEIGHT GAIN.

Unfortunately, since Speech Therapy has ceased....we are sort of on our own until Tristan gets into the Feeding Disorder Program at Bethesda Hospital in Boynton Beach. We've been told it can take a long time to get in...lovely. On a brighter note, Tristan is back to sitting in his high chair and eating approx. 4 oz of level 2 (pureed) food. For a while he was even refusing that. Sometimes I wish I hated to eat food as much as Tristan does.....