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!