Monday, July 20, 2009

I'm so excited!

Harlie did GREAT during feeding therapy today. Just GREAT!! She had yogurt and thickened juice - and ate a total of 1.2 ounces!!!! HOLY COW!!! That's the most she's ever eaten!

Allison (her therapist) put the thickened juice in a squirt bottle. Here's what it looks like:

She also put yogurt in one, too. The squirt bottle helps us get the placement we want in her mouth. And then she had yogurt in a cup to give her on a spoon. We use a kitchen timer so Harlie knows that there is a start and end time, and she gets to press the button. We were doing about 12 to 15 minute sessions. Allison upped her time to 18 minutes. And she did great! Everything about this session was so exciting!

And close to the end of the session, Allison gave her a spoonful (a regular baby spoon, too - not that EZ spoon I mentioned earlier) of yogurt and Harlie closed her lips around the spoon and was able to take all the food off the spoon, and then swallow it! WOW!

The reason why this is so fantastic is because her lips are getting stronger. She used to not be able to do that. Since she's never eaten by mouth, all the muscles and workings that we take for granted are weak and uncoordinated for her. The fact that she could get her lips closed around the spoon is FANTASTIC! And then with food being in the middle of her mouth - for her to then swallow it is HUGE!!! We used to have to use the flat spoon and scrape the insides of her cheeks and teeth to get her to be able to swallow it. You would not believe all the muscles that have to work together to get the food from the front of your mouth, to the back and then to swallow. Seriously.

Another reason why this is so fantastic is because now we can let her feed herself some bites. What a difference this will make at dinner time! I was so excited to see what would happen. So, I put some yogurt in a little bowl and gave her a regular baby spoon and she scooped up some yogurt, put it in her mouth, and ate it. Just like a regular kid!!!! WOOHOO!!! She ate all of the yogurt in the bowl!!!

Allison was really excited about our session today, too. She said that it looks like we're going to start working on volume now. AND - she is going to up Harlie's sessions to two times per week!!! This really is so incredibly exciting for me - I just can't tell you!!!!

Of course I had to ask about the intensive feeding program. It is a 6 or 8 week program where you go there five days a week and spend most of the day there. She gets fed there throughout the day. It is a hell of a commitment, that's for sure. I really don't know how we're going to manage when that time comes, but like so many things in Harlie's life - we'll cross that bridge when the time comes. All I know at this time is that's where we're headed when the time is right for her. Allison told me that there is about a three month wait. But, she wants to up her sessions for now and see what happens. Plus, with Harlie's upcoming spinal fusion and jaw reconstruction, it's probably best if we wait till all that is behind us.

All we have to do is get her to eat a few ounces several times a day and we could cut back one tube feeding per day!!! Can you imagine??? I can't think too far ahead, but as Allison said, "This was such a hopeful session."

Well, that's our exciting news. Now it's time to go and relax for a bit.



lindsay said...

wooo hooo!!! congrats on an awesome day! And all that while sick??? Impressive!

Robin said...

Christy, I am so happy to hear your news, Congratulations!!! BTW, the Richmond feedling clinic is so well known that even here in Denver it is held as the gold standard. I may bring Faith there in a couple more years if we can't make the progress we want here. Best, Robin

Susan said...

That's awesome Christy! I know how frustrating the feeding issues can be. It's great to have a really great day!

Janis said...

AWESOME!!! Woohoo!! Here's to continued success with that spoon baby!!! I love the timer idea, although I am not sure Austin would get it. (Hmmm.)

Beverley said...

We were set for feeding clinic (the one in Charlottesville) and never made it! Leyda kept making progress....her tube has been out for a use for 6 months prior! Go for it Harlie!! Go girl you can do it!