Quick Update

Walter and I have been a little discouraged lately. It feels like we've taken several steps back with Isaac and this is very disappointing for us. Today was the gastric emptying study, and Isaac actually did very well and now we will just wait for the results. His overall health has been good so I am hoping that a diet change has led to what seems to be a happy tummy. His mood though has been...well, I shouldn't even talk about that. 

These pictures are from several weeks ago. The first two pictures show how we manage Isaac's feeding tube and extension set (which is the tube hanging down into his pants). Several months ago, I watched a video of a mom cleaning her son's stoma (the name for the hole where the g-tube goes in) and since watching her technique, I began following relatively the same approach and he has had a beautiful stoma ever since (that sounds like an odd thing to say, but it used to get rather crusty, so this has made a big improvement). 

Basically, I clean the area with a q-tip, and apply (depending on my mood, or the look of the site) neosporin or Calmoseptine (your pharmacy can order this for you) to the site with a q-tip and then place two gauze pads around the tube. It works perfectly (for us). Also, because Isaac doesn't like us to touch him or mess with his tube, we keep the extension set attached to the g-tube. Most people do not do this, and instead, unhook the extension after each feed. We've found that it is less stressful for us if we use the tab on the diaper to secure the tube in place and keep it all tucked in the onesie. 

I love watching my kids play. They have such focused and interesting play habits, so it's always fun to see what they come up with.

We often play the "grocery game" so that Isabella can practice counting money.

Acrobatics...

Surprisingly, Isaac has been in a good mood today. We can hardly believe our good fortune since the past two weeks have been a struggle in terms of dealing with his mood. I'm sorry for the relative boring post, but not much beyond survival is happening on our end.

Inniswood Gardens

We've had some growing health concerns regarding Isaac, so the last couple weeks have been very hard for us. Right now we are waiting to have some testing done on Tuesday, and then we will have a better idea of what we are dealing with. The concern is that he has developed gastroparesis, which is basically a condition where the stomach has a hard time emptying its contents. This causes stomach discomfort, vomiting, and diarrhea, among other things due to a decrease in fluids. It is a miracle we weren't in the hospital over the weekend. Times like these make us grateful for the g-tube because we are able to control what goes in despite what unfortunately, comes out. After phone conversations with the doctor, a visit to the doctor, blood work, stool cultures, and a visit to GI just in this week alone, the goal is to maintain hydration and next week work on rebuilding calorie and fat intake, and also have a gastric emptying test on Tuesday. By Sunday night it looked like our little man was disappearing before our eyes, but his energy is beginning to improve and by last night he was able to tolerate his required daily fluid intake. His GI has suggested a blend of almond milk, applesauce, a carbohydrate, and kefir, to work on getting his system back on track. We've had two days now of no vomiting and just pray that continues. 

For now, here are some pictures from the Inniswood Gardens in Westerville, Ohio. We had the chance a few weeks ago to visit my cousin who was in town from Florida. Due to my inability to sit still, I dragged everyone to three different parks that day. Inniswood won out as the favorite, followed by ice-cream, which was Isabella's favorite. 

Venturing away from the stroller and considering the rope bridge. Don't get all excited, it didn't happen--he started screaming right after I took that second picture.

Isaac was fairly unhappy, so we parked him in place while touring the small secret garden, and pretended he wasn't there. Sometimes, the less we acknowledge his existence, the happier he is. He's a very interesting child.

Flowers, and no underwear

"Ma ma, don't forget to ask Papa and Gar to bring flowers for me." I heard that statement many times in the weeks preceding Isabella's ballet performance. It seemed that the most important part of the whole event would be getting flowers. My parents were all set for the special, post-performance flower delivery--so I had nothing to worry about there. What I did worry about, was whether or not Isabella would actually make it to the performance. She'd been an unhappy ballerina for months, and at one point I considered throwing in the towel and calling it quits. At that point I had to consider her reasons for disliking ballet, which were as follows: 

-It makes her sweaty.

-She's just a kid who wants to play. 

-It's too much work.

Well, I get it. She definitely is "a kid who just wants to play", and I am happy to let her play as much as possible, which is most of the day--I think I've figured out that she plays 60% of the day, spends 30% of her day eating (yeah, she eats a lot), and spends 10% of her day completing school work and/or extra curricular activities. I'd say that creates a pretty fabulous day for a five year old (six in a couple weeks!). But I'm all for facing the reality of life as we know it, and what makes life interesting, is all the things that are hard work and quite possibly, make us sweaty in the process. 

I was a little emotional as we got out of the car and were gearing up to make our way into the building for the performance. Isaac was passed out in his car seat, so I took a moment, there in the parking lot to look Isabella in the eye and tell her how proud I was of her. I told her that the reason I was proud, wasn't because she knew the dance, or because she was going to look beautiful on stage (which she did, of course), but I was proud of her for sticking with it. Even though it was hard work, and she often didn't want to go to ballet class, she stuck with it, and made it to the special day where she could share her hard work with the rest of us. She beamed, and I live for those moments. 

We practiced and practiced and practiced. Here is Sarah, helping the girls remember their dance moves. 

Though Charlotte was not part of the performance, she found a leotard in Isabella's room and joined in the practice session.

Performance day really wore out Isaac:

Fixing hair and make-up. Last year, the fabulous mom that I am, I forgot all about make-up, and was reminded several times this year that she needed lip gloss.

I turned around and found Isaac using binoculars...

Apparently, the second most exciting part of this whole event, was that she was not supposed to wear underwear. Who knew how thrilling that would be for a five year old? "Oh mom! It just feels so good not to have underwear on!"

Like I said, Isaac was passed out. From car seat, to what I call our homeless cart, this time it just so happens to have a trash bag slung across the top. This is a pretty accurate picture of what it looks like when we go to doctor's appointments: feeding bag, Isabella's book bag, and my purse/camera bag, and a bunch of crap stuffed in the far too small mesh part at the bottom.

I think the following pictures speak for themselves:

Lastly, my very best friend--not sure what I would do without her.

After the performance, Isabella looked up and said, "Do I get to take ballet next year?!" Much to my surprise, she was very happy when I said, "Yes, of course you will." She also told me that Papa, Gar, and Josh did a very good job picking out flowers, and as far as I know, she has been wearing underwear every day since then.