July 4th (on the outside)

We made it! We survived July 4th without anyone needing a doctor! The last "good" 4th we had was in 2012 and I was anxious that with the holiday rolling around again something would happen.  I wasn't sure what it was but I was hesitant to plan anything. 

In 2013 my family was in Plumtree for my cousin's wedding. July 4th I had to make a phone call to my OB to explain my symptoms to her only to have her confirm that it sounded like I was having a miscarriage.  

In 2014, Keller was only about 8 weeks old. July 4th started as normal (for our very difficult normal at the time). But by late afternoon Keller had thrown up so many times we lost count and we went to Emergency Dept. in Greenville, ultimately for a "Failure to Thrive" diagnosis and feeding tube to follow. 

In June of 2015 I had started changing his diet from specialized super expensive toddler formula that was largely corn syrup solids to a homemade blended diet of real food.  While I had consulted 3 dietitians I found it difficult to get much guidance as we made this jump because it was not something that was common practice. I jumped in with both feet and my efforts to help heal his guts ended up clogging them.  Which landed us in Greenville again at the end of June and we spent July 4th 2015 back in Vidant. 

However, that was the last time he was in the hospital so we are close to being a year hospital admission free! Yahooo!!! Keller, you've come a long way, Baby!

Yesterday was trickier than I expected it to be.  As I mentioned, I had been scared to plan anything because I figured it wouldn't matter.  The evening of July 3rd I had a small panic attack before going to sleep, worried about what secret doom was awaiting me on the 4th.  I woke up yesterday anxious, teary in the shower, I wanted to do every possible event to keep myself busy because the tears were going to be close all day. I told Phillip that I was struggling after I got out of the shower, to our surprise the thing that was stinging the most was the 3rd anniversary of the miscarriage and all the wonderings that go along with a lost baby.  Soon we were out the door to go see my brother read the Declaration of Independence as John Penn at Tryon Palace. Later, we went to a friend's for some pool time with a lot of friends and riding out a hurricane of a summer storm, then to my parents for a cookout with family, and finally to my BFF's for some hangout time.  We did it all! All the things I was afraid to confirm our attendance, all of the things we weren't sure we would be able to make, we made them, the four of us! I'm thankful for some girl friends that threw up flare prayers when I was sad yesterday and for my husband understanding that I just needed to be busy, really really busy. 

Keller loved his first 4th on the outside! He skipped nap and was a ball of energy (and sometimes angst) all day! 

In other Keller news, he's doing great! He has a cardiology appointment next Monday and I was going to wait to update the blog until after that but I figured a simple facebook post for that will be sufficient. He has recently seen the GI doctor and had a feeding tube check both offices are happy with his progress.  Keller doesn't look like a kid that needs a feeding tube but he hasn't quite got the full hang of eating. He needs about 1000 calories a day, he takes in roughly 2/3 of those on his own on a good day.  He's so busy it's hard to make him sit still to eat, in true toddler form he is a grazer and could eat little bits all day. He is more adventurous in his choices than his big sister. Once he takes 100% responsibility for his intake and we go 3 months without using his feeding tube, I call the doctor at the surgery office and let them know.  The next step is to remove the tube at home and cover the hole in his tummy with some gauze and tape and be seen in the office in two weeks.  Ideally, the stoma will close on it's own but he has developed some scar tissue that could prevent it from closing totally. If that is the case he will have surgery to close it up and will end up with a vertical line as a scar instead of a circle. But on his sweet scarred up tummy a line, a dot, a lightning bolt won't make a difference to us. He is our boy no matter what and Norah wouldn't have him any other way either. :)  He is speaking a bit more, he has about 40 words and a few sounds that I know mean words. He still is behind on that but no one is worried about it.  We actually exited the CDSA program two weeks ago as he is no longer receiving therapies and we aren't currently using their services.

We are Praising God for where we are this journey! Thanks for checking in on us!