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.