"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!