Jan 14, 2014

Major Feeding Progress and New Stuff

I have exciting news to share. Hopefully I don't jinx things by talking about it. Ainsley has made major feeding progress. Over the years we have worked SO hard to get Ainsley eating. And every time she made good progress I would push her more, hoping to get her 100% oral. We spoon fed her, or pureed what she didn't eat after meals, made daily blenderized meals or a combination of these methods. You name it we tried it. If she progressed I pushed, sometimes too much too soon and she regressed. Or she would do great for awhile until she would get sick, have zero appetite and thus regress. Or she would do great over the summer and regress when she went back to school. It was SO frustrating! As I look back and type this, honestly, it's amazing I kept trying.

As you've heard she moved onto solids this year and I think that has made all the difference because it opened up a whole new world of more enjoyable foods. We had looked into a feeding program at the hospital but decided on a more gradual approach at home.  She passed a swallow study in June  and so we worked hard over the summer.  She was doing great but I knew from experience school days were going to be a challenge (not nearly as much time for feeding) so we augmented each meal with formula to make the dietitian/doctors happy. We went from 6 cans of formula a day, to 4, then finally to 3.  Pretty awesome!

We kept with that "program" for months and and watched her weight carefully. Thankfully it remained stable. We did a round of Botox injections in October and I do believe that has helped her keep the cap on her trach which I think both helped her eating and kept her from getting as sick this year. So again, thankfully, we didn't see the typical regression during cold and flu season. Since things have been going so well I decided to push a bit more over winter break because we had more time to feed her. We made the decision to cut the remaining cans of food. Since she is at risk for aspirating on thin liquids we are tube feeding her whatever milk she doesn't drink with her meals. She did fantastic!

At "Breakfast with Santa" she actually ATE BREAKFAST! 

She ate Christmas dinner! And tried a meringue (they have a funny texture). Wow!

On New Years Day she ATE BREAKFAST...

 Including the waffle with berries and a bit of toast (eggs and sausage she's eaten many times.)

She spoon fed herself an entire cup of yogurt with no help!

After so MANY MANY meals over the years sitting with her for nearly 2 hours I was so happy to see Steve taking a turn! 

I nearly died when she ate a BURRITO!

On movie night she ate 2 pieces of cheese pizza all by herself!
It was so awesome we couldn't believe it. She's been eating crust for years but never eating the whole thing by herself. We actually hunted around the house to see if she hid it before we have her another piece. It was pretty funny! Then we gave her pizza leftovers for lunch the next day and she ate 2 more pieces of pizza by herself!

It was the turning point.

We decided to continue with this regimen when she went back to school on the 3rd. I was nervous that it would fail. She doesn't have enough time to eat her lunch at school but she has been finishing it after school when she gets home before I give her a snack. It's challenging to get all the food in but she's done it. It's been over 2 weeks since she's had formula! (She is still getting fluids through the g-tube, water for hydration plus milk since she's at risk for aspiration of thin liquids.)  I do think she must feel better because she's also had a burst in vim and vigor. She is taking risks she never would have.

She climbed into this position from behind Evie going over her head. Amazing!

And she did it again and again at any opportunity. 

Then she climbed onto the ledge to then crawl across it (this was the first time so I snapped the shots but we won't let her do this in her nightgown anymore). 

WTH?! Scary!

But really I'm thrilled to have her take some risks because it's only by taking risks that we grow. 

I was reluctant to post this for fear that things will change. My hope is that if we can keep with it she will build endurance and strength. She likes eating. It's just hard work. We may have to adjust our expectations in the future if the amount of effort this takes doesn't improve. But if we don't try she won't just magically make the transition. I want to have faith that her body can be in control of her own hunger and food intake. I think she deserves the chance and I am cautiously optimistic.  


  1. Your kid is freakin amazing. I mean really. And so are you, I am not even close to discounting your dedication and years of work with her. I tell Harmony all about Ainsley and her progress, maybe one day we'll get there, who knows! (For now, she likes tastes and playing with Puffs, which is light years ahead of where I thought we'd ever be.) Rock on, Ainsley!!

  2. Susan - I'm just seeing this now, but how wonderful! Go Ainsley!!!