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.