2 Years Old!

I have been the worst Mommy Blogger over the past year. On the bright side, I've been busy chasing after my very active toddler:) Tyler turned two years old on July 28th! We had a very small family party with a John Deere theme. Tyler loves my John Deere tractor and likes to cut grass with me. He calls it "Mommy's tractor":) So....what is Tyler doing now? He's saying all kinds of words, sleeping in a big boy bed (although not all night, unfortunately), eating with silverware and in a booster chair. He's quite the smartie and can throw a mean ball at you, just like his Bubby! On the medical side, his heart hasn't changed much. It's gotten a tad bit larger but the function has held steady. He's sees Dr. Garmany every two months and Dr. Miller every 6 months. He's battled illnesses over the winter very well. He's quite the active little kid and can scream at the top of his lungs!

Now, I am going to re-commit to updating this blog on special occassions!

Halloween!

Tyler started walking a few weeks ago, so he was able to walk around the neighborhood for Trick or Treat. He was a little chicken and Colin was Batman!

We've been lucky that he was able to get the H1N1 vaccine and he has been approved for synagis shots again this year. I feel like all I do is take the boys to get shots:(

Tyler had a wellcheck appointment last week and he weighs 22 lbs. and is 30 inches long. So many kids with cardiomyopathy are in the lowest percentiles for weight, so I'm really happy with Tyler's development. He is in the 20% percentile range.

Surgery

Tyler's ear tube surgery went well on Wednesday. He screamed his little head off as he was coming out of the anesthesia, but once he settled down, it was just amatter of time until he was back to his normal self. We spent the rest of the day at home. I started having flu-like symptoms that afternoon and our house has been under quarantine ever since then. I tested negative for the flu but we all still started on tamiflu. Tyler has developed a respiratory illness and has been wheezing quite a bit. Hopefully he'll get over this quickly. We're all starting to get a bit of cabin fever!

Ear Tubes

After numerous ear infections, Tyler saw Dr. Dawson this week and he thinks we should proceed with tubes. We're scheduled for surgery next Wednesday at Womens and Childrens. He'll have to be admitted and possibly stay overnight due to his heart condition. We're hoping he doesn't have to stay so that we can avoid the illnesses on the pediatric floor. All of his cardiologists are on board with the surgery so hopefully it goes well with no problems. And hopefully this will reduce the number of antibiotics he's on and his sleep problems.

Follow-up...

Tyler had his echocardiogram with Dr. Garmany. She didn't see any change. His Shortening Fraction at the part of the heart that she measured was 23-25%. He was in a little less fiesty mood today so she was able to get the shots she wanted. We don't see her again for three months.

Tyler had his photoshoot with the Littlest Heroes Project yesterday. The Littlest Heroes Project is a nonprofit organization made up of professional photographers nationwide who provide free photo sessions to our nations littlest heroes. "This is our way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses." Founder Felicia Reinhard wanted to find a way to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.

A wonderful photographer with Ampd Photography took the shots. We spent almost two hours at Coonskin park taking various shots. He's a wiggleworm but Donna got some good shots. I'm super excited to see the finished pictures. I know there is one of Colin, Tyler, and myself that is really good. It's hard to get all three of us to hold still for a good pic at times:) I'm assuming some of his pictures will go onto the Littlest Heroes website. It's a great organization, so check it out. http://www.littlestheroesproject.org

Back to the Doc..

Tyler saw Dr. Garmany today for a check-up. She increased all of his meds with his weight. He wasn't too happy to be there today so it's a good thing he didn't have his echo today. He seems to be fascinated by light switches these days, so all he wanted to do was grab at the light switch in the room:) We go back next week for an echo.

Dr. Jones thinks he should be seen by an ENT to evaluate the need for ear tubes. This worries me a bit considering he'd have general anesthia. Dr. Garmany said it was fine to do but she would be surprised if we didn't have a hard time finding a dr. in Charleston that would do it considering his heart condition. She said he'll probably end up being addmitted to Pittsburgh Children's Hospital to have it done. **sigh, another trip to Pittsburgh.

On a lighter note, he's really a lot of fun right now when he is in a good mood. He has the biggest grin and is as rotten as all get out! He and Colin feed off of each other with the rotten-ness:)

Back to Pittsburgh...

We started our trip to Pittsburgh Children's Hospital at 8 am and what a day it was! We didn't get home until 7 pm and the only place we stopped other than the hospital was KFC for dinner. Poor Tyler! It's such a long day for him. We arrived at the hospital at noon and didn't leave until 3pm!

Dr. Miller said there was no changes to his heart and she was pleased with that. Mommy was a bit disappointed but I'm trying to convince myself to be happy with it. I wanted to see an increase in his heart function, but Dr. Miller said it could be years before we see any improvement in his heart. His function was at 37% today. No leaky valves. No increase or decrease in size. She is strongly leaning towards him NOT having the left ventricular non compaction. We wouldn't know for sure without doing testing which really wouldn't change the treatment, so we'll skip putting him through the testing.

I still can't believe all of this has happened and it is from an illness he got at such a young age. But I try to tell myself that this is the path God wants me to go down and it's brought me closer to him and showed me how strong I can be. And I need to trust that he will take care of Tyler and that Tyler has a much bigger purpose in life than I can ever imagine.

Choo Choo! Nelsonville Train Ride

My parents, Mike, and I took the boys on a 2 hour train ride in Nelsonville, OH. They had fun of course. There was a 30 minute stop where we got to tour some old time buildings and watch exhibits. Colin got to pet some snakes (**cringe) Mike and I got old fashion root beers and Colin got a lollipop!

He turns one!

There was a time 10 months ago when I didn't know if we would ever see Tyler turn one. Thankfully, we can celebrate a year of tears, laughs, and triumph with him this July. Through all the challenges of the past year and a half, Colin and I have grown and strengthened with him and are thankful for the close family that we are now!

Now, onto the party! I'm not sure Tyler knew it was his special day:) He wanted nothing to do with the presents or the cake! So, we opened and ate for him! Mostly Colin:)

Tyler weighs almost 20 lbs and is 28 inches long. He's eating table food and likes almost anything.

Starting Daycare

Tyler started daycare in July at Fort Hill. We were very fortunate to be able to keep him out of daycare for his first year of life and he formed a very close bond with "his Dixie", who watched him for a majority of the time his first year. He had quite a few tearful goodbye's for a couple of weeks but has settled in to daycare life now. It has taught him how to crawl. He absolutely hated being on his tummy and loved walking with my hands, so I thought he would just skip crawling and go straight to walking but he learned that he had to crawl if he wanted to compete with the other babies in his class:) Colin loves it that his baby brother is now going to the same "school" as he is.

June Fun!

At Meemaw and Pawpaw's (Betty and Fairon)

Yummy Carrots!

Having fun at the Bruni's!

Trip to Columbus Zoo and COSI

Mom and I took the boys for a two day trip to the Columbus Zoo and COSI. They had a great time! The trip was mostly for Colin, but Tyler really got into it too.

Visit with Dr. Garmany

Tyler had another echocardiogram today. His function was at 29. Dr. Garmany was pleased. She did note his heart is getting bigger. I talk to Dr. Garmany every two weeks on the phone for an update and increase of his Carvedilol, but we won't see her again until after his 6 month follow up with Dr. Miller in Pittsburgh in September. Keeping our fingers crossed for a good report when we go there. It is always so nerve-wracking not knowing what they will find.

Tyler's Dedication/Mother's Day

Tyler's dedication to God and the church was held at Elkview Baptist Church on Mother's Day, May 10th. Colin and I went to the front of the church to dedicate Tyler. How fitting to dedicate him to God since it is only by God's hands that he is here with us.

Another Miracle for Tyler!

Tyler had an appointment with Dr. Garmany today. The left side of the heart has decreased in size and his function has increased from a 23 to a 34! A normal heart function is 29. While this increase is due to the medicines he is on, it is still great that his heart is getting stronger and hopefully we can get him off medications at some point in his life. Dr. Garmany was surprised at how well he is doing and very encouraged by his progress. We are increasing some of his medications to keep up with his weight.

Things Tyler is doing now: clapping hands, sitting up, reaching and grabbing EVERYTHING, and taking big boy baths with his brother. Still waking up in the night for a bottle. His temper is really starting to show too:)

stats: 8 mths. old, 17 lbs. 17oz., 26 in.

September 10th--Looking back now, we realize that the part of the heart measured was probably just a better part of the heart. Later echos have proven that there hasn't been much change in his heart function.

Bye Bye Digoxin!

Dr. Garmany is starting to wean Tyler off of Digoxin. Hopefully in two months, we will be down to only 5 medications!

Childrens Hospital Visit in Pittsburgh

Our third trip to Pittsburgh was on Monday and Tyler got a good report. Dr. Miller was very pleased with the way he presented. There was no significant change in his heart function or the size of his heart, but she is pleased with his activity level and his growth and overall health. She's also seen two more kids that present the same way that Tyler's heart does and they were definitely diagnosed with CM due to the interovirus, so she believes that Tyler's condition is a result of the virus and not congenital.

We are now set to visit Pittsburgh twice a year and be followed here by Tyler's local cardiologist.

God is good!

Bring on the Good Stuff!

Tyler is starting baby food and loving it! So far, he's eating applesauce, bananas, and sweet potatoes. He weighs a whopping 14 lbs. and 14 oz. at 5 1/2 months old!

"Welcome to Holland"

Welcome To Holland

copyright 1987, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Christmas

Christmas is delayed for us due to Tyler being sick. The doctors think he has RSV and wouldn't let us leave town in case Tyler got worse and needed admitted to the hospital. He's been doing so well up until this illness. Mom and Dad came down Christmas Eve night and stayed for Christmas day so that Colin could have a good holiday at least.

We took Tyler to see Dr. Garmany today and his heart function (SF) had increased from 20 to 23! I'm finding out from other parents in the Cardiomyopathy Foundation support group that heart functions will fluctuate frequently, but I'm still thrilled to see an increase. She did note that his heart seemed a bit larger today.

Off To Pittsburgh!

We went to Pittsburgh for our second appointment with Dr. Miller of the Heart Center at Children's Hospital in Pittsburgh. Tyler, my mom, and I. It's such a long day when we go there. The trip up takes 4 hours, then we're there for at least 2 hours, and then we have to drive home. Tyler had another echo and EKG. His heart function was at 40EF and 20SF. Not too much fluctuation from the first visit. His heart showed a change in shape that leads the doctor to believe he has Left Ventricular Non-compaction Cardiomyopathy (LVNC). She suggests that we do genetic testing at our next visit to see if this was a congenital disease. This will help us to have a better understanding of how his disease may present itself in the future and the best treatment options.

Props to mom for getting us out of Pittsburgh without getting lost this time!

Striving for a Normal Life

Back to work I go and we begin a new routine at the Lindsay house. Colin goes back to daycare. Tyler stays at home with his babysitter, Danielle. Now, add in at least one doctor appointment a week. We see Tyler's local cardiologist and his pediatrician once a week. Both are great doctors and take excellent care of Tyler. Tyler is on 8 different medications, 6 for his heart and 2 for acid reflux. He's growing and putting on weight.

Tyler's Homecoming (Part 2)

After a month in the hospital, I brought Tyler home again. My friend Amber stayed overnight that first night and it was a good thing. I was a nervous wreck. Tyler had 6 medicines that I had to administer to him at all hours of the day. I didn't think I would survive that first night at home. We took him the next day to see his local pediatric cardiologist, Dr. Garmany who referred us on to the doctors of the Heart Center at Pittsburgh Children's Hospital.

Meanwhile, Tyler and his brother were bonding again and our community joined with us in praising God for our little blessing.

Tyler's Hospitalization

On August 8th, I took Tyler to the ER. He wasn't eating well, sleeping all the time, and started throwing up. They did a spinal tap to check for spinal meningitis and after it tested positive, Tyler was admitted to the hospital. That began a month long stay that would be the worst of our lives. Within 24 hours, Tyler started having trouble breathing and was intubated in the middle of the night. We were moved to a private room in the PICU unit that soon became our home.

Every day, the doctors would tell us a different organ in Tyler's body was shutting down. His liver, his kidney, his lungs, etc. We'd take one step forward and what seemed like 5 backwards. He was on the ventilator for a couple of days before the doctors decided to try a different type of ventilator. This machine shook his whole body in an effort to get his systems to start working. His body quickly retained water and he didn't even look like our Tyler anymore. The nurses rotated his body frequently to keep the pressure from being too much on one side. Touching him left indentations in his swollen body. After one particularly hard day of bad news, I asked Tyler's pediatrician (best pediatrician we could have ever hoped for) if there was any good news that we could hold on to. His response was that Tyler was as sick as he could possibly be.

It had been determined that Tyler had contracted two different common summer viruses. How this happened we'll never know. The viruses were attacking his body and each organ one by one.

As all of this is going on, we were fervently praying along with everyone in our church and community. Slowly, we started getting good news. I've never been so excited over someone peeing as I was to see Tyler's urine filling up his catheter tubing! The doctor came in for daily rounds and the first thing I said was, "We have pee!"

I became friends with all of the nurses on the PICU floor and they became bonded with Tyler. We watched day after day as other kids came and left the floor. Finally, the day came when Tyler was ready to be extubated. He did fine overnight but early the next morning, I started noticing that he was having trouble breathing and his skin was starting to turn blotchy. He was quickly going down hill and I could sense from the nurses this was not a good sign. By mid morning, Tyler was intubated again and we were set back an entire week. The doctor's felt they had moved too fast and dropped off too many of his medications.

So, three days later, we tried again. This time was a success!

The one organ that had not bounced back was Tyler's heart. He had developed a condition called Dilated cardiomyopathy. His heart didn't pump blood as it should and needed the help of many medications. It really didn't hit me in the hospital the total impact of this disease. It wasn't until weeks later that it really sunk in. I was just glad that my little boy was eating again and looking around and crying!

Tyler's Birth

Tyler was ready to come into this world about 4 weeks earlier than what he should have. He was born via c-section and came out with a smile for Mommy and Grandma. After 3 days in the hospital, he was ready to go see his new home.