Friday, June 3, 2011

Baby Steps Forward

Today was our last day at Seattle Children's Hospital for tube weaning. Going into the wean, Jack weighed 23 lbs. 5 oz. This morning as Jack was placed on the scale we all held our breaths. 10.8 Kilos was read aloud from our therapist, Karen. That's 23 lbs. 13 oz. folks! A whopping half a pound was gained WHILE BEING WEANED!!! Absolutely incredible. We expected Jack to lose weight while being here, not the opposite. We know all scales are different, but Jack has definitely gained weight. He feels heavier. His cheeks are fuller. He even looks more healthy. The Dietary Department has done an intensive analysis of everything Jack has been eating (we keep detailed records) and on June 1, he ate a whopping 1300+ calories during the day. That's way, way more than he needs for growth. Our boy was hungry!

We've been warned that once being home kids often fall into their old routines and sometimes pull back on eating. We pray this is not the case for Jack and that he continues to increase his volume and curiosity for food. We were given our plan to continue the wean at home. As of now, Jack is still getting water and 5 oz. of formula through the tube every day. As Jack learns how to drink, we can back off the water and if Jack continues to eat well, we can stop the formula all together.

Another interesting fact that we learned today is that it oftentimes takes up to three months for a wean to totally work. Three-ish months for kids to get used to food, eating every meal, and to start growing. We hope and pray this summer is the one that Jack says goodbye to the tube once and for all. How awesome would that be to remove the tube come September?!

We really, really appreciate all the hard work Karen and the team here at Seattle Children's put into Jack's therapy. He had three meals a day at Children's and we learned so many valuable lessons that we will take with us. If any of you are thinking about a tube wean that is not behavioral based, I would HIGHLY RECOMMEND this program. It is relatively short (many programs are months long) and instead of cutting out all liquid, water is still given, which I believe makes the kiddos feel a bit better while still producing hunger.

We took the camera with us this morning to show you what a session looks like. Here we are working on texture with a tomato veggie straw.

Jack always wants what mommy and daddy are drinking.

So we got Jack his own cup and put milk in it... tricky, huh?

He's still not sure of it.

The damage.


After Jack is done (this morning he ate a couple ounces of strawberry yogurt, some green beans, and a couple crumbs of veggie sticks) he get his bolus of water through the tube.

We are so thankful for Karen and her awesome work getting our kids to eat!

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Sarah Pope said...

I love the pictures! It looks like Jack was having a good time! Praying that Jack continues his amazing progress in the months to come. That's an incredible weight gain! I'd love to hear some of your tricks (I especially liked the idea of putting milk in the Starbucks

Lindsay said...


So, so happy to read this!!! I can't believe he actually gained weight! We will continue praying for Jack. Will also pray God grants you guys patience as you work with Jack so diligently.

Julie said...

Those pictures were great. Love him! He's just so cute - and I'm proud of him (and you)for making so many baby steps these last few weeks. Praying for the transition home.

WebbB said...

Giant leaps! We're so proud of our little man.

Shannon said...

That is simply incredible! I'm shocked, too, that he GAINED during the wean. What an amazing and motivated little man! We'll be praying he continues to do wonderfully at home.

Rebekah said...

Way to go Jack! Praying for the transition home.

Babs said...

Good work, Jack! I love that he wants what Mom & Dad are eating.

Anonymous said...

Jessi, Happy to to see that the feeding clinic was successful! I've got Asiah scheduled for the clinic in September. I am so excited, Thank you so much for the info. I would have never known about this program. It sounds like it is very successful for many little peanuts!