Tuesday, July 17, 2018

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. 

Sunday, February 25, 2018

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!!!