Thursday, September 30, 2010

Feeding Therapy Update

Harlie is feeling better and went back to school today.  Today was Therapy Thursday, but her feeding therapist had to cancel and it was rainy and yucky outside, and I was feeling really crummy and tired, so I cancelled the rest of her therapies and sent her to school.  She finally has a morning bus assigned (I've been taking her to school every morning, except for Fridays, when she takes the bus).  It's confusing because her schedule is different on Thursdays and Fridays.  She goes to school at different times during the week.  It looks like she'll be taking the bus every morning starting next week, which is great.  For one, she loves it.  And for another, it will save me a ton of time every day.  That will be a great relief.

I have a lot to catch you up on, but I'll start with Feeding Therapy for now.

She has been on the waiting list for the intensive feeding program here in Richmond.  The feeding program is considered one of the best in the country and people travel from all over to attend.  Entry into this program has been a goal of ours from very early on.  Well, Harlie's name came up - and as crazy as it is - it turns out Harlie doesn't need it after all.

Seriously crazy.

So crazy, in fact, that it took me a few days to really come to grips with it.  It's just weird.  We've been talking about getting her to the point that she was a candidate for so long - it was kinda hard to accept.  And, this is a GOOD thing.  In fact, it's a GREAT thing (logistically I didn't know how we were going to do it anyway)!  The whole point of intensive feeding therapy is to get the child to eat a variety of foods, and to wean from the feeding tube.

And can you believe it?  We have done both!!!  Now wait... I should clarify.  We haven't completely weaned from her tube - but most days - she reaches her calorie goal - completely by mouth!!!  It's exhausting (for all parties) to feed her four times a day (and sometimes we have to tube her depending on what's going on).  The setting has to be "right."  We have not tried oral feedings out in public yet.  We are going to do that during therapy soon - we'll go into the cafeteria there and feed her and see how that goes.  I'm expecting that to be quite challenging.

So, we are hardly weaned from the tube.  But, we are so much closer than I ever thought we'd be.  And intensive feeding therapy just isn't necessary at this time.  I'm sure there will be plenty of opportunities.  She still has to learn how to handle some texture - and we can't even think about chewing.  Odds are she probably can't chew food until she has another jaw reconstruction to even out her jaw.  Ugh.

I think we would all agree that feeding her is a joyful experience when she's a willing participant.  But sometimes, she wants no part of it.

Nice, huh?

She's been wearing her PMV a lot more lately.  She definitely does better at keeping it on during school than when she's at home.  I know it's because she knows she can get away with it at home.  But, there are only so many battles I can fight at one time.  And I'm thinking the more she wears it at school, and sees that she can make sounds and get some attention, eventually getting her to keep it on all the time won't be a battle.

Here's her saying "dinosaur":

Pretty cute, huh?  You should hear her say "all done."  That is very clear.  Hearing her voice is totally awesome.  The other day, we went outside and she sneezed.  And it was the first time I had ever heard her sneeze - like a real sneeze sound!  It was so darn cute I stopped in my tracks.  I wanted her to do it again.  Talk about enjoying the little things!!!

Okay, that's it for tonight.  I will post some birthday pics soon.  



Susan said...

Ahhhh, that was so cute seeing her talk! I thought her flipping up the shirt was hilarious! I'm so happy for you that she's eating so well! WooHoo! Happy dance for you!

Beth said...

Ok... You have no idea what hearing her voice does to my heart!!!! I love keeping up with things through the blog BUT we should really plan a visit sometime soon =) I have a little guy now that would love to meet you guys! xoxo

Jennifer and Elizabeth said...

Christy is the feeding program the one at children's hospital?? If so Elizabeth was going to go there, but our children's hospital instead went adn got trained by them and now has the exact same program here. Elizabeth did 10 weeks last summer and we are actually looking at another 10 weeks next summer. It is very intensive and hard, both emotionally and physically. I completely understand what feeding times are like. I am so happy to hear Harley doesn't need the program...great job mom and Harley!!