Sunday, July 17, 2011

We're Still Here...

Our little family! 
I apologize it's been so long since my last post. Life has been busy... those of you that currently have or have had a child the age of 16 months should know the kind of busy I'm talking about. Last week was an extremely crazy week filled with dentist appointments, routine car maintenance, working, going to the storage unit to hunt for beach paraphernalia, and packing for our weekend get away in celebration of Mark's birthday!

On top of all this our sweet Nathan, has matured a bit in the way of him thinking he knows what he wants/needs better than his mommy or daddy does. Nathan has become super independent when we are out and if we try to lead him one way and he doesn't want to go, he makes sure to tell the whole store or where ever we are that we are crazy parents who don't have a clue. Occasionally, he will follow the screaming with kneeling down on the floor with his head down and bottom up crying like we are just the worst parents ever. Mark and I knew this time was coming, we were just hoping it would be closer to the age of two? Hmm... maybe since the "terrible twos" have visited us a bit early he will be back to his angelic self by the time he is two? Ha... I'm sure that's a crazy idea! All jokes aside, he is still our wonderful, sweet Nathan and we love him just the same! It's just one of many phases we will go through in this amazing journey called parenthood. 

Mark and Nathan
On Friday, we headed down to the Outer Banks for a quick, spur of the moment trip we only booked the week before for Mark's 40th birthday! We had the wonderful pleasure of watching Nathan's wonderment when he saw the beach and ocean for the first time in his life. Of course, he won't remember it, but we've got plenty of pictures to show him as we tell him the story one day! Nathan wasn't sure about the ocean at first, but he quickly learned to love it and it was hard keeping him out of it! It was a much needed break from reality, and  an exciting preview of our full week-long vacation we are going on in September with some of our dearest friends! We may have to rent a U-haul for that trip, as our car was loaded to the max for this quick two-night trip. You could tell that we were first-timers going away with a child with all that we packed, not to mention all of the extra medical "stuff" that Nathan requires and the fact that I felt the need to bring extras of extras just in case. In the end, I ridiculously over packed, but knowing myself I will do just the same come September's vacation.

Kill Devil Hills, Outer Banks, NC
Nathan has been off of the Pulmicort slurry for a little over a week now. He seems okay most of the time, but we have noticed him coughing occasionally throughout the day over the last few days. He is even gagging a bit more on foods these last few days two. We aren't shocked, as we knew he could regress once the steroid was removed, we were just hoping that he wouldn't. We wont know for sure until August 17th when he undergoes his third endoscopy and biopsy. Right now that seems like an eternity... last night something scary happened while he was sleeping, he woke up crying and then he started 

Dana and Nathan
coughing/gagging/choking all at once, we just knew he was going to vomit, but amazingly he didn't. I had my hand on his stomach and it felt like it was doing flips in his little tummy. I immediately turned his feeding pump off and disconnected it, my worst fear was that his stomach wasn't emptying properly and that he was refluxing and choking on his EleCare in his sleep. He settled fairly quickly and went back to sleep, although I can't say the same, I just laid there and listened to make sure he was okay for the longest time. He still had 10 ounces of EleCare left in his bag, which is a huge portion of his calories for the day, but I just tossed it, as I couldn't bring myself to go through that again.

When he got up this morning he seemed fine and drank his EleCare like normal, he even ate half of a whole banana for breakfast, that I cut up into very small pieces for him, as he still isn't chewing his food well at all. He did great all day, no more weird episodes of choking, until we put him to bed. He was asleep for almost an hour when it happened and he was not hooked up to his pump, so I can't blame that this time. He hadn't had anything to eat for a good hour to hour and a half before we put him to bed. But the same exact thing happened as the night before. Dr. Williams did say that reflux is a very common problem after having a g-tube placed, but I would have thought it would have shown up before now, plus this just seems too scary when it's going on to just be reflux. I am really thinking that he's reacting to something we are feeding him and this may just be the beginning sign of it... only time will tell and we will just wait to see what happens for now. Tonight he had 200ml remaining and I just hooked him up before beginning this post, we slowed the flow rate from 50ml/hour to 30ml/hour to see if that makes a difference. I'm not sure if it will since he did it tonight without being hooked up to his pump. So here's to another day in the life of dealing with EoE and I'm off to bed to lie awake and listen out for every little noise Nathan makes tonight, I swear I feel like I did the very first night we brought him home from the hospital jumping at every little peep he makes.
Beach bum Nathan
Daddy's boy!


  1. I just love him. I can't wait to see him splashing in the waves with us in September.
    I'm sorry you're going through this though. I wish I could be of more help!!!

  2. Anne... your friendship is more than enough for us right now... I can't tell you the number of fair weather friends I've realized I have... it's sad. But it makes me that much more thankful for my friends old and new who are so supportive to our family as we navigate this journey God has laid before us. We are so thankful for you and Justin and your friendship!

  3. What a great weekend trip! And such darling pictures. I'm sorry he's having a rough time. But I've still got my fingers crossed that the scope comes back clean!