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 :)






















5 comments:

  1. He's growing up! What fun you've been having! And such good news about the independence for eating and calories and enjoying all the variety that's out there. Woohoo, Stephen!! Hugs from Jonathan and Nicholas!

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  2. Lindsey,
    Sorry, I am a bit delayed in my reply to the blog. Uncle DIck had his knee replaced on Tuesday and most of my time has been at the hospital. He is doing great and will be discharged tomorrow. I know Stephen's blog will be the first thing he looks at when he gets home.
    Great to hear that Stephen is having a great end of summer. He looks wonderful!!! I am sure the air and car show was a hit. Hope to see you guys as soon as UD is finished therapy.
    Love and Hugs,
    Aunt LuAnn

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  3. So happy to see Stephen growing up so strong! Also, just saw the pic in your last post of him wearing his superhero cape. Love it!
    ~Erin

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