Thursday, June 15, 2017

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.

Sunday, March 5, 2017

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.

Sunday, November 27, 2016

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!




Tuesday, May 3, 2016

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...   :)





Thursday, February 18, 2016

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.  
     

   




Monday, August 24, 2015

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.


Monday, April 6, 2015

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!