Monday, April 21, 2014

Food for the soul?

It is only chocolate pudding.

But tonight, it was food for the soul.

Especially for this mama, knowing this kid doesn't usually eat very much very often.

The only thing I did differently was put it in a fancy glass.  Go figure.  :)

Check out the lip closure on the spoon!  I am totally sharing this picture with our speech therapist.  We have been working on this for months...

I don't even care if he got it on his pajamas...

Man, I love those eyelashes.  :)

We have been struggling here with some people not having a lot of understanding about all that we do to work with him and how long the process of weaning off a feeding tube is going to take.  Why we need to be at home certain times of the day because he needs to plugged into a feeding pump and we just can't make it to every sport game under the sun within 50 miles.  Why we just don't go on vacation that much and our days out of town revolve around doctor appointments and feeding clinic visits.  Why I don't work at least part-time because there isn't a daycare in town that will take a kid with a feeding tube (never mind the fact that I teach piano lessons, sell 31 products, babysit and I want to be a stay-at-home-mom and Jared wants me here, too).  Unfortunately, Jared deals with the brunt of this pressure, along with the normal pressures of being in the ministry.

I understand from the specialists we work with that we will still be begging him at 8, 12, and 18 to keep eating and put just one more bite in his mouth.  I'll always be counting calories and looking for healthy, high-caloric foods so we get more with every bite.  We are in this for the long haul.

In total, he ate a good 6 or 7 spoonfuls tonight.

Tonight was a break through and it gives us a glimpse into the normal of the future.

He is slowly working through the eating/oral/sensitivity issues and he has come such a long way from freaking out if something touches his lips or cheeks like he was at 6 months old.

And for this we are so thankful!

Keep it up, little man!  We love you so much!


  1. Beautiful! In so many ways. I'm sorry that there is so little understanding for you. But I do know that Timothy was blessed with the very best parents for him and good for you for doing what is right for your family, despite the criticism. I love the 4th picture down. He looks like he is just lost in the pleasure of chocolate pudding on a spoon. Bring on the chocolate pudding and fancy dishes!! :)

    1. Thanks Jayme! If only I had taken a video, you could hear the yummy sounds he was making. :)

  2. the pressure from other people to diverge from the path we've chosen can be really hard to handle. instead of giving a zillion reasons for why we live how we live, i've just started saying, "this is what is best for our family." some people will never understand, but that's okay. after all, it's your life. not theirs. stay strong, mama! and yay, timothy! :)

    1. Thanks Gina! I need to start using that phrase instead of feeling like I need to defend myself with a list of reasons!

  3. Sarah, hang in there. JJ's issues are different than Timothy's, but I feel so sad sometimes that he and I are being judged. You don't know what another is going through, how much progress has been made, how much is overcome, and simply how hard things are at times. I love reading about you and sweet Timothy and I rejoice with you in the progress he's made. Those who judge are ignorant about the things in your life. You owe them no explanations. Just keep doing your best each day. God's blessings on you and your family.