Tuesday, August 12, 2014

New Milestones and July/August Update

We've had another great month here at the Schwartz house and all sorts of new things and milestones have come and gone.  Last time I mentioned that Stephen has been working on using the potty and wearing his big boy undies.  Well, I can officially say he's now potty trained!  It was definitely bit of a struggle; some of which may have been because of his anatomy and kidney-related stuff, and some of which may have just been plain ol' stubborn Stephen, but it's great to finally be at a point where he's over the potty hill and definitely ready for preschool.  He does still wear an extra absorbent diaper overnight because he's still getting about 500 ml's of fluid overnight, and we sometimes wear a pull-up during "rest time" and during long car rides, but once the undies go back on, he's been great at telling us when he needs to use the bathroom.

Another big milestone has been the transition from his crib to a toddler bed.  We really hemmed and hawed over this since he's still connected to his feeding pump overnight and wasn't crawling out of his crib or anything, but at 3.5 years old, it was definitely time to make the move. And when we've been traveling this Summer, he's been sleeping either in a twin bed or double bed.  So, we thought about just getting him a double bed (so we could all snuggle in bed together and read books), but then I just bit the bullet one day and converted his crib to a toddler bed and he LOVES it!  You'll see in the pictures below, he was over the moon!  And since he's no longer napping during the day (one milestone I was NOT looking forward to), he spends about an hour and a half some days just playing in his bed with a few cars, crawling in and out, and looking at his books.  It's been great!  And since there's no day time nap, he's been falling asleep much quicker at night and (knock on wood) has yet to climb out at night while hooked up to his pump.  So, I think he'll just stay in this toddler bed for a while longer until he outgrows it, and then we'll move to a double bed.  Luckily, I'm able to crawl in with him and snuggle :)

And....this past weekend we did a trial run with no g-tube feeds; just water, to see how it would affect Stephen's eating.  And overall, I think it went really great.  Stephen's daily fluid requirement is 1,345 ml's (which is way more than any typical 3 year old would ever drink and probably more than I drink in a day).  This includes things like water and juice and any fluid that goes in his g-tube.  His daily caloric requirement is between 900 and 1,000 calories.  So starting last Friday, I stopped his high calorie formula and only gave him water in his g-tube to see if he would get hungry enough to eat enough calories.  By Sunday, he was up to about 1,000 calories (thanks to all the fattening movie theater popcorn he eat)! The good news is, he's eating!!  The bad news is, it's really terrible food (think chicken nuggets, fries, Oreos, etc.), not a whole lot of variety, and definitely no where close to the fluid goal.  But....it's a start.  And I'm really happy with his progress.  His newest cravings including mini-Oreos, marshmallows, and grilled cheese.  And he did take a few bites of apple and nectarine for me.  If I could just get him eating some more protein and some fruits and veggies, I'd be ecstatic!

This was this past Sunday when we took Stephen to his first movie at the movie theater.  I was a little worried he'd think it was too loud, but he absolutely loved it and sat through the entire movie!! Can you guess what we went to see?!

We also went to CHOP last Monday for his monthly transplant clinic visit.  Everything went great and all his numbers were perfect!  They made zero changes to his medications and were really happy with how he's growing (he gained a pound and one centimeter).  The only thing we have to follow-up on are some little nodules or bumps they found on his tonsils.  Last month his tonsils looked a little enlarged, and this month they had some little bumps, so we're going to go see an ENT for a consult and get it checked out.  It wouldn't surprise me if something is going on in there because he still has this lingering cough at night and in the morning and both Bill and I had to have our tonsils removed when we were kids.  But it's a minor thing and I'm not too worried about it.

And in other news, Stephen starts preschool in a few weeks!  He'll be moving from Early Preschool 3 to Preschool with some of his classmates and will have two of his favorite teachers next year.  Bill and I think his school (Primrose of South Riding) has been the best thing for him and couldn't be happier with how he's learning and growing.  So next year, he'll go from 2 days a week to 3 days a week and we feel beyond blessed to have found a school to accept him and his extra little challenges and to love him just as much as we do.

Next up....a BIG vacation with Nannie and Poppa in September and a HUGE, GIGANTIC, HUMONGOUS surprise for Stephen at the end of October that he doesn't know about yet (think the magical mouse and his favorite red race car all rolled into one big wish).  Shhhhh, it's still a secret :)  But I will share more later....