"O" boy...he is a young man!

This kid right here...   He is 14 years old and doing all of the amazing things.  In the past year he has put on 10 pounds and has grown almost a half a foot.  He still has the feeding tube for emergencies but will be removing that in July 2023.  His GI doctor is super proud!  His favorite foods right now are cheeseburgers, pizza, and macaroni and cheese. 

Visits to the pulmonologist are still necessary as Cyler still has decreased lung capacity. However, during his last visit we observed Cyler wasn't really. blowing effectively during the pulmonary function test, potentially skewing the results.

He is doing amazing at his little private school.  There is no focus on grade level but rather meeting kids needs where they are and building from there.  The goal for Cyler is take the GED when he is ready.  He does really well in reading but he struggles with math.  He has dyscalculia, a disorder affecting the ability to grasp even the most basic math concepts.  

Right now he is enjoying life to the fullest.   He is dancing and excited for the upcoming recital.  Tae Kwon Do is on hold right now so he can focus on dance.   When he goes back he will pick up where he left off...red belt.   

Life of American Teen! Yes...really!!!

 I can't believe Cyler is a teenager.  He is growing into such a wonderful young man.  He is kind and thoughtful.  He still attends school at Progressive Learning Center.  He has 5 other kiddos in his class and they are all boys.  He really likes school.   He is still in dance and we have added Taekwondo! He is testing soon for his brown belt. These activities have been amazing for his self esteem and focus.   

Cyler is still a little underweight so we have had to increase his feeding amount and he is tolerating that well.  He really likes eating certain foods.  Some of his favorites are pizza, chicken nuggets, and mac and cheese.  Recently, he had a pulmonary function test and was put on a new inhaler.  It was determined that is lungs were only functioning at 73%.  The doctor wasn't too concerned but said it could be a little better.  We have had one follow up and there has been an improvement of 1%.  

This summer Cyler graduated from occupational therapy due to all his hard work.  We are so proud of him.  

So far, so good!

It has been a whirlwind of a year.   Our sweet little boy is not so little anymore.  He is 11 and full of sass!  He is really growing and putting on weight.  He is still getting tube fed at night to assist with his caloric intake.  He is in a school that he loves but is rapidly outgrowing because he is learning so much and they only teach up to a certain level.  AHHH!  We are in the process of researching our options.  Here is what we have been up to this year.

Recital: Sonya (his dance teacher) did an amazing job in putting this show together and Cyler loved every minute of it.  This kid is a star and he knows it!  He is not afraid to tell anyone and likes to perform anywhere.

In addition to dance Cyler has started Taekwondo this year and it has been really good for him.   His dancing skills have helped him so much.  He has already earned his yellow belt!

Heart follow up:  All is good.  His PVC's are minimal and he can do everything...no limitations.  He was super excited to find a "Mickey" in his heart! He still has to get checked every couple of years to make sure everything is still ok.

And...this Halloween he wanted to be "mac and cheese".  It is his favorite food.  We had fun making the costume and even won a couple of contests.  After a couple of days he got a little tired of wearing it.  He said he "retired it" and decided to be King Arthur for book character day at school and our church fall fest!

Daytona Here We come....

Several years ago my mom made a deal with Cyler.  She told him that she would send him to Talledaga when he is able to eat a whole cheese burger.  Well he did it...FINALLY! He ate an entire cheeseburger from Wendy's!   He decided that he would like to go to Daytona though because he would be able to get "fan passes" there.  So, we are going to the Daytona 500 in February!  This is all after feeding tube placement.  He is still tube fed at night but his appetite is still pretty good during the day.  He has managed to gain 10 pounds.  YAY!

He hasn't eaten a cheeseburger since then.  LOL.  We have been super busy.  He attending school closer to home and LOVING it.  He has an AMAZING teacher.  He has grown so much this year physically, emotionally, and academically.  He still loves building arcades out of legos and drawing birds eye diagrams of all of the arcades he has been to.   He loves his dance classes and in fact is taking 5 of them this year.  Phew, I have no idea how he can remember all of those steps.  His recital last spring was amazing and he had 3 dances to remember.  He is my little star!  Here are some pictures from the 2018 recital.  He made me get "pictures for his portfolio".

He is so creative too.  He wanted to be the Monopoly Man for Halloween and he actually won 2 contests.  Hasbro even used his picture on Instagram.  Super cool, Huh. 

On top of all of this he is still working on melting hearts world wide.  He was recently invited for a private tour date at the Lakeland Police Department.  He spent some time with the boys in blue and their furry partners.  He brought treats for the fur guys.  They loved their time with him so much they made a video of their time spent together and featured it on there face book page. 

More next time....  Here is a cute pic from our recent Disney Cruise.  <3 .

Still Chewing...

Cyler is still chewing.  Some of his favorite foods are sausage patties and meatballs.  He likes to chew on the right side of his mouth only so we need to work on that.  Even with all of this progress in eating Cyler still wasn't gaining enough weight.  He wasn't even registering on the growth chart for his height and weight.  So, he got his feeding tube back in to help with some extra feeds at night. 

We are so lucky they were able to put a Mic-Key button in right away AND in the same hole that he had before.  We did have to spend 2 nights in the hospital though so they could see how he would tolerate the feeds.   Of course they tried him on one of the most expensive formulas out there and insurance doesn't cover. 

We made it home and his poor tummy was terribly distended and bloated but he was "tolerating" his feeds.  He developed a scary red rash around his tube and on the left side of his abdomen which warranted a trip to the ER.  Turns out the very thing they give people to prevent infections (Neosporin) causes allergic reactions in many after 3 days of use.  We stopped using that and he cleared up in a couple of days. 

After about 10 days his tummy adjusted and he was not as bloated.  He was pooping well but we did have to add Mirilax.  He also developed a horrible case of the burps so we went back on Zantac and Zithromax.  We had our follow up 2 weeks after the tube placement and Cyler had put on 5 pounds and grew 1 inch!!!!  We got the ok to switch to a formula that he was on years ago which is easier to find at a lower price.

He has been on that formula now about a week and is doing great.  Even less burping.  He is adjusting well...we all are.  It was a necessary decision. 

Chewing, Chewing, Chewing.........

Cyler is CHEWING!  I can't believe how far he has come! His GI doctor told us a few years ago that one day he was going to just do it....and he is.  This month he has really progressed.  He has CHEWED and SWALLOWED a cheeseburger, french fries, gold fish crackers, sausage patty, fruit snacks, pears, and so much more!  

He currently bites the food using his back left teeth and tends to keep it on that side but is using his tongue to move it back over to that side which is fantastic.  We will work on getting him to chew on the other side as well but for now we are just happy he is chewing.  He has been doing all of this with no gagging!!!  A little drool escapes every now and then but this is a process and we have a ton of napkins.  (getting him to use them is a different story) . 

We meet with his speech therapist every two weeks to monitor progress and make adjustments as needed!  It has been quite an adventure with years of therapy, including a 4 week intensive feeding program to get to this point!  We are so proud of him!  

Below is a picture of Cyler's first 'non mushy' dinner!  He did AMAZING!!!

It's Fall Ya'll!!!

We are trying to enjoy all of the things that this time of year has to offer.  Cyler has decided that he wants to be Mickey Mouse for halloween.  This proved to be a bit of a challenge as the Mickey costumes were either to big or too small for him.  Sooo, we had to create our own costume and Cyler is not disappointed!  

School is going super well.  He is going 5 full days now!   His favorite days are Tuesdays and Thursdays because they are "enrichment" days.  FUN!  He has art, cooking, field trips, engineering, and gardening (the only one he doesn't like).  He is doing super well and his knowledge base is expanding by leaps and bounds.  This school has been amazing for him!  I was never this excited to go to school!  (below)

The weather has been amazing and Cyler was super happy that he got to wear that jacket.  It has been a cooler couple of days and we are getting out more. We went to a pumpkin patch and Cyler picked out his own pumpkin.  (the little one) . He also picked out one for me.  We are planning to carve them and roast the seeds.

  

What a beautiful time of year!

Growing Like a Cyler...

Cyler had a follow up appointment with GI today.  He has gained two pounds and grown one inch since his last appointment in February.  Dr. M is completely ok that we decided not to pursue the endoscopy at this time.  He explained that Cyler requires a different path of treatment and will likely remain on the smaller side throughout his life.  However, I am happy to report that he is on the chart for both height and weight.  4h percentile and 2nd percentile respectively. 

The plan is to continue as we are at this time as far as intake goes. Dr. M has Cyler scheduled for a breath test and another 24-Hour esophageal PH test so that we can make sure there isn't anything standing in the way of him eating enough.  We also received a referral for allergy testing (again) to see where we are with that and speech therapy (again) to work on oral motor strength and coordination.  Dr. M advised us that right now it is more important to build the strength and endurance to be able to chew before we worry about him actually chewing.  So we have to give the Y chewy tubes a work out for a while. 

Dr. M explained that since Cyler had the omphalocele his system works differently and if we push more food than his body can handle it will get stuck and/or his body won't absorb the required nutrients. So Cyler's "special path" needs to be carefully laid out. The goal is for Cyler to put on enough weight and eat enough to handle the growth demands that will be placed on his body from 11-13.  As he approaches 11, if extra support is needed, we will have to consider a feeding tube again for a year or two to pull him through.  We will cross that bridge when we get to it.

2nd, 3rd, and 4th opinion!

As most of you know Cyler has an aversion to chewing his food.  He was fortunately able to lose the feeding tube when he was five years old due to taking all of his diet by mouth.  He really eats like a champ...he just won't chew.  

Approximately 2 months ago we had an GI appointment and instead of seeing
our regular GI physician we ended up with an different one. One who has never seen Cyler before.  He gave Cyler the diagnosis of Failure To Thrive.  This diagnosis breaks my heart and I am sure I am not alone in that.  Anyway, he wanted Cyler to add 2 pediasure drinks a day in addition to his regular diet and come back in 2 months for a re-check.  We found out relatively quickly that pediasure wasn't going to work.  Cyler threw up every bit of the stuff.

We had to think of something and fast.  We decided to make super smoothies once per day and add extra calories and variety to his diet.  So he is drinking 2 carnations in the morning and his oatmeal has coconut oil, flax seed, and cream in it.  We have been adding extra calories whenever we can.  Anyway, we were met with a major bump in the road.  Cyler ended up with a nasty upper respiratory infection that lasted about 2 weeks and included 10 days of eating AND drinking very little. We were forcing fluids and he was on 2 antibiotics and ended up with an earache to boot.

So fast forward to our followup appointment and Cyler has only maintained his weight.  Again the appointment was with someone totally different.  This time it was with a very nice ARNP who decided that we needed to do a endoscopy to see why he isn't gaining. Though, we agree that it isn't a bad idea to look deeper into the reason for the weight issue,  we weren't 100% comfortable with the timing or urgency.  The ARNP further told us not to try anything else until after the scope and this made us even more uncomfortable.

We reached out to Cyler's pediatrician and voiced our concerns.  She agreed that it wouldn't be unreasonable to try a few more things and wait a few more months before doing any procedure, especially since he had been sick for a few weeks.  She also added that she would like us to make sure we meet with his primary GI physician face to face prior to scheduling any kind of procedures.

So here we are!  We have a couple of months to try and put some weight on this kind and schedule an appointment with his regular GI physician. At that point if we haven't gained enough, we will revisit the need for the endoscopy with his doctor.

New Year....Almost!

We have begun a new season in our life. I heard the term "season" from several people recently and it fits perfectly for different periods and circumstances in life. Cyler is attending a private school and doing so well.  We stumbled upon this school in a Facebook post.  There is a teacher that was fed up with our local school system and wrote a resignation letter that went viral.  She decided to open a school where kids could learn in a progressive, playful, and hands on environment. We decided to jump on board and haven't looked back. He goes 3 full days a week and studies his core subjects with children in and around his age.  He is in the "lower primary" classroom.  Kids age from 5-9.  Basically k-2 but not strictly. Cyler is learning in a way that suits him.  He is reading!  He likes to read!

This has been a huge adjustment for our family.  I have started working again...remotely.  The 3 days that Cyler is in school; I do my work at Starbucks so that I can be nearby.  His school is about a 30 minute ride from our house and I feel better being close.  Besides, I get coffee and free refills!

Cyler still participates in dance class and is the only boy in his class.  He doesn't mind being the only guy one bit.  In fact, he loves all of the attention.  He performed in his first recital last spring and did super well.  He is focusing more and enjoying the process.  He will have a small part in the Winter Wonderland show coming up here in a few weeks.  Can't wait to see that!

This kid is growing up!

I can't believe Cyler is 8!  He has grown so much....literally!   He gained 4 inches and 4 pounds in the past year!   WOO-HOO!!!!  That dance recital that I mentioned in the previous post is just around the corner and he is READY.  He has this routine down. I can't wait to see it! He keeps us pretty busy!    

We also discovered buddy ball!  Cyler has played soccer the past few years and it was getting really hard to keep up with the other kids.  He is small for his age.  So...we tried buddy ball!   He is great at it.  He hits the ball like a pro.  They just had the final game of the season and he got his trophy!

There have actually been a lot of "Firsts" going on around here!  He is riding his bike.  Well, learning to ride his bike!

He thought that was pretty awesome!  I have to agree that it was pretty cool.  We have gone many places and done many things.  I am hoping that we have a lot of fun this summer!  We are still planning on continuing the homeschooling through the summer.  We have a lot of flexibility and we find that he learns a little better when he is actually interested in what he is learning about.  Inserting a few pictures of our shenanigans below!  :)


Pool at my moms house!  He needs all that stuff to stay on top of the water.  lol.

Center of attention at buddy ball!

I made a birthday "pudding cake" for Cyler.  It was the first "cake" he was actually able to eat.  He didn't eat much of it but at least he tried it.

He got to be Goliath when we went to Holy Land!  He loved it there.  The artworks an sculptures are incredible!

Lastly, here is a picture of Cyler in his suit!  Sooo handsome...   :)

Update 2016

     It has been a while and it has been crazy.  We started out the school year in the Polk Virtual and that was an epic fail.  The teacher had no clue about 1st graders and could not function/became frazzled with a full class of 7 students.  When I reached out to her she informed me that my son "couldn't" do anything and after a meeting with administrators it was decided that homeschool would be the best option for Cyler.

       It has been one of the best choices.  It has been in my heart to homeschool for a long time but I just didn't know that I could do it.  Well Cyler is doing great.  He is reading really well and is benefiting greatly from the flexibility of the schedule. He is learning so much more.  I am glad we made this choice.

      On another note, Cyler is getting ready for his first dance recital.   We weren't sure that he wanted to do it but he and the dance instructer are going to give it a try and we are going to be good supportive parents.  Though, I am eager to see if he spins off during the recital to perform his own interpretation of the dance.  This should be an interesting show.
 
        I cannot believe my kid os going ot be 8 years old in just a couple of months.  This has been one of the best years for personal growth for him.  He has made friends and is learning to handle himself in social situations.  His ABA therapy has helped him a lot with that.  All and all it was a great year.  
     

   

Cruising Along!

I can't believe that we are starting another school year!   Cyler did great in Kindergarten and we finished out the school year with a Disney Cruise.  What a way to kick start the summer!   We had an absolute blast and Cyler got to do something that he has hope to do for a really long time----sit on an island with a coconut drink!

      This is where he stayed
              on the island!





We participated in an organized gift exchange with fellow cruisers.  It is called a Fish Extender exchange!   Strange name but, if you are on a Disney Cruise you will see a fish next to each cabin.  The tail of the fish is used like a hook and that is where you hang what they call a Fish Extender.  Essentially an organizer with multiple pockets (one for each family member).  It was so much fun to return to our room each night to find cute little trinkets.  Cyler's favorite was the personalized hat.

Our cruise included a stop in Nassau!   So many people leave bad reviews about this place.  It isn't bad it's just different.  I would encourage anyone to go at least once.  Cyler had a blast playing music with the locals.  Wouldn't trade this experience for the world.

We had a whole day at sea.  We got to explore the ship and Cyler had a chance to meet the Captain.  Cyler was a little concerned that the Captain wasn't "driving the ship".  He was so cool and told Cyler that Captain Hook was taking care of it!

The Disney Cruise also has a Pirate Night deck party.  They shoot fireworks in the middle of the ocean and have a dance party on deck.  Many pirates can be seen on board.

The whole experience was fantastic!  We were sad it had to end.  We did make some new friends and tons of great memories!  This is Cyler and our assistant server!

Now that summer is over it is time to start a new school year.  Cyler is in the 1st grade.  We switched from the state version to the local version so that Cyler could have a teacher to meet with face to face. He actually did too well in kindergarten that they had him redo assessments on a web cam so that they could see him do the work. His ADD/ADHD/PDD and IQ from a mental health exam had them thinking he couldn't do it.  Well...he passed with flying colors! However, this wasn't fair to him.  He had worked so hard to complete his work!  Anyway, this new local online school will hopefully prevent that situation from happening again.  I am hoping they can see that he is capable of most anything and just sees the world and processes things a little different than some.

Chunky Mac and Cheese!

Cyler will be 7 years old tomorrow and I can't believe how fast this year has flown by.  He started Kindergarten in Aug and is doing amazing.  He really doesn't like it and finds the busy work boring but he is still doing well.   We are doing an online program where the curriculum is already mapped out and provided.  It makes it easier.  All we have to do is log in and complete the work.

He is growing so fast and has a super appetite.  He is still mostly eating purees but now tolerates thicker and chunkier food textures.  Macaroni and cheese that is mashed is one of his favorites.  He used to eat this with no lumps.  Now, all I have to do is smash it with a fork a few times and he is good to go.  He still needs to work on proper chewing but he is definitely getting there. We are so proud.

He is still completely obsessed with car racing.  He still tells everyone that he went to Daytona 500 last year.  We have a local small speedway here and visit there when we can.  He LOVES it!   I go just to watch him!   The other night we went and he actually won the raffle they had and got to choose a basket.  He picked out a cool Easter basket.  It had cars and trucks of course!

Trucking along.

Time is flying by.  I can't believe my kiddo is 6 years old.  Here is his 6 year picture.  Still quite a ham!

We had a great summer and enjoyed all of the time together.  Dad lost his job at the beginning of summer and fortunately picked up a new one.  This new one didn't start until August, so we were able to spend extra time together.  I continued working through out but I am blessed with an extremely flexible schedule.

We went to see Winter the dolphin in Clearwater with Mom-Mom and Grammy.  It was super hot but worth it.  Cyler was super excited that he was able to see a real super-star.  He had never seen the movie before so we purchased it while we were there.  

We traveled a couple hours up north and visited a retirement home for horses.  They take old horses and let them live their final years with dignity.  Visitors are only allowed 1 day per week and for only a limited number of hours.  There is no riding but there is a lot of feeding.  Admission is 2 carrots per person and the horses LOVE carrots.  It was a great experience for Cyler.  He was able to see how all of their personalities were different. Some of them we trained to be performers and still liked to put on a show.  

Of course summer would not be complete without a couple of trips to Old Town and a visit from uncle Jordan.  

Riding Go Karts with Dad.  1st TIME!!!

 Getting stuck between this two was actually a choice.  He loves his Jordan and his Jayme!

 Grammy time...

Summer was over in the blink of an eye.  It was a lot of fun while it lasted. Everything got crazy all at once. Cyler has started school and is doing very well.  It takes about 4-5 hours a day but we are able to take breaks when needed so that he can dance around and get his wiggles out.  I am so glad we chose to learn at home.  He takes school very seriously.

We are so proud of him.  He is also playing soccer. We did get clearance from his cardiologist.  Cyler had to do a holter monitor because he was showing a different kind of heart beat. He generally has PVC's and a slower heart rate than most.  This time he was showing beats coming from other places within his heart.  The monitor showed that his junction would kick out a beat if he heart rate dropped to low...which is what it is supposed to do.  Sooo...he got the all clear!   His first game was today and he did wonderful. The Coach said Cyler is a natural due to the fact that he was able to easily switch his kicking foot.

Dad even got talked into being a coach since they are short a couple.  Cyler has also joined the 4H club.  He is a clover bud.  Most of the kids are older than him but he seems to do ok.  I like that they are planning some community projects and at the end he will do a public speaking presentation.  I am sure he will do fine.  This kid can TALK.