Tuesday, September 23, 2014

Life is Good!

So the last time I posted, I talked a bit about Stephen's new foray into no g-tube feeds.  It's been a little over a month now and I'm more than happy to report that he's doing amazing without the high-calorie formula!  He's been eating like a champ!!!  So much so that some days that he actually exceeds his daily caloric goal!  It's so amazing.  To go from thinking he'd never eat, to now having to keep my fridge, freezer and pantry completely stocked at all times is so awesome!  Bill actually made a comment last night about it before dinner when Stephen was asking for a snack and I told him he needed to wait until after dinner before he could have a snack (his favorite....mini oreos).  I never thought those words would come out of my mouth!

I'm actually meeting with his teachers this afternoon at school to discuss how we can keep him more hydrated and fed at school so that he wouldn't need to come with his feeding pump each day.  He still has the same fluid goal of 1,345 ml of fluid a day, so I'm hoping to send him each day with an insulated thermos he can keep with him throughout the day.  If he's able to drink most of it during the day, he wouldn't need to get a g-tube feed during the day.  And I'm also hoping they might be able to give him some extra crunchy snacks with his lunch to help boost his calories.  The chef at his school feeds the kids really nutritious meals and it's not stuff Stephen's started eating yet (fruits, vegetables, yogurt, etc).  But I'm over the moon about his progress!  And...no more feeding therapy!  Woo hoo!!

And to top that off, his lab work was perfect last month at CHOP.  I thought for sure something would be off since he's not getting the completely balanced formula any longer, but it wasn't at all.  His numbers were perfect!  And he was so cute getting his blood drawn this past time.  He was sitting in my lap while the nurse drew his blood and handled it like such a champ.  Once she was done, he turned to me and said, "Mommy, I didn't cry!! I did it!"  It was so cute and just melted my heart.  Now if he could just accomplish that every morning we drop him off at school, we'd be set!

Speaking of school...I can't believe I haven't shared his first day of preschool pictures!  I totally missed the boat on that one.  Oops!  He's actually a lucky little dude because he has two of his favorite teachers from last year again this year; Mrs. Smith and Mrs. Thompson, and some of his best buddies are also in his class again.  So even though he still cries every morning at drop-off, he's loving school and learning so much.



And if you're not on social media, check out this link to a special feature The Waiting List did on Stephen and his first day at school #becauseofmyorgandonor:  


We also took a trip to the Sweigart's (my sister's family) beach house a few weeks ago and had a blast riding around Ocean City, MD in their pontoon boat with Stephen and his cousins and last weekend we went to a car and air show in Hagerstown, MD with Mimi and Poppy.  Oh and I can't forget the York Fair.  Stephen finally had his first taste of a big fair and had his first amusement ride.  He loved the whole scene and I think is now totally hooked on amusement rides!! And fair food is right up his alley!  Fried and salty :)






















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....








 

















Tuesday, July 8, 2014

May/June/July Update

We've been flying through Summer enjoying the sun, sand, and fun summer activities and I haven't been very good about sharing all of the great strides Stephen's been making.  Since the last time, we've been down to Florida and back; down to Wilmington, NC, to see the Freeman's (Stephen's kidney donor) and celebrate Memorial Day weekend in Southport, NC; had two visits up to CHOP; Stephen spent a weekend at Mimi and Poppi's and went to see Thomas the Tank Engine at Strasburg; and then most recently we made the long haul from Philadelphia back down to Southport, NC, to Nannie and Poppa's for the 4th of July.  And then in between we've been hanging out at the pool every chance we can get, working on some updates to our home (we re-landscaped the backyard), going to swim lessons, and Stephen started a new round of feeding therapy once a week.  And he's still going to school/daycare two days a week where they have soccer camp every Tuesday.  It's been a whirlwind Summer so far, but I can definitely say, it's been the "most normal" and probably the most fun we've had in many years. Certainly since Stephen came along in 2011.

Stephen is growing by leaps and bounds and is becoming such a fun little boy.  He absolutely LOVES the pool and is doing so great in his swim lessons.  It's amazing to watch him in swim lessons jump right in under the water and follow right along with the instructor.  And he literally makes friends everywhere we go.  It doesn't matter where we are, he finds a kid, a teenager, or some adult to talk to and tells the funniest stories.  I know I'm a little biased, but it's impossible not to smile when talking to him.  He just lights up a room! And the little bugger is just so smart.  He'll memorize a new library book in 2-3 days and he's got the Pledge of Allegiance and "God Bless America" down pat (his Daddy is way proud of that)!

And the new round of feeding therapy is going great.  He's added a few new foods over the past few weeks:  grilled cheese, jelly, chocolate hazelnut spread, rice krispy treats, and a few bites of apple.  And because of this, we've been able to ween him a little bit off his high calorie formula.  The only downside has been the addition of extra water/fluid he gets in his tube because he's grown so much, but with time, I think he'll be able to reach his goals.

Another big milestone has been potty training and sleeping in a big boy bed.  We had been struggling with potty training over the past couple of months, but I finally just made the move and put him in undies one day and we haven't looked back since.  Now we're at the point, that he will definitely be able to make the transition with his friends to preschool in September, which I'm incredibly happy about.   And with all the traveling we've been doing, Stephen's gotten pretty used to sleeping in a regular bed instead of his crib.  We never made the move to a bed because he still is connected to his feeding pump at night and I was concerned he would crawl out during the night and pull out his tube, but he hasn't done so yet.  He fell out one time at Nannie's house this past weekend, but that's been it, so I think it's time to officially convert the crib to a bed!  I keep saying it feels like he's "3 going on 10" in the blink of an eye.

But most importantly, his health is fantastic!  Every time we go to CHOP, we seem to be able to lose another medication and he's now down to only 5 medications and he doesn't take all 5 every day.  And he may just stay off the CellCept indefinitely.  CellCept is one of the big anti-rejection medications and it has a lot of nasty side effects (some of them are too scary to even mention) and has wreaked havoc on Stephen's cell counts in the past.  I've been hoping that they just leave him off of it since he's doing so good right now and his doctor seemed to agree with that sentiment last week since all of his labs were great.  We saw both the nephrologist and the liver doctor last week at the combined kidney/liver clinic and got confirmation that his liver and spleen are still holding steady.  No changes really at all since we saw her last before transplant.  His spleen and liver are still both enlarged and pretty "rigid," but they're both functioning well considering Stephen has ARPKD and CHF and we'll just keep our fingers crossed that his function remains the same and he won't ever need a liver transplant.  The doctor says she sees patients like Stephen that will make it through to adulthood without ever needing a new liver, so we just hope Stephen is one of them.  And we'll just continue to make our monthly treks up to Philadelphia until Stephen gets totally sick of it.  But for right now, he's a happy little traveler and likes taking our road trips to Philly since we always pass the train station and see the sky scrapers.

I hope everyone is enjoying their Summer as much as we are and I'll share more pictures as the Summer goes along.





















Wednesday, May 21, 2014

Pool Time!!

Here are some photos of Stephen loving the swimming pool!  There were a lot of squirt gun battles, a lot of cannon balls, and a lot of splashing!!  I think it's safe to say, I finally have a water baby!!!