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.  

Thanks!
~Christy

Feeding Clinic Appointment

This morning we had our big nutrition appointment with the Feeding Clinic team at the Children's Hospital here in Richmond. Harlie's feeding therapist, Allison, had already given them a report on how Harlie is doing eating by mouth. She is really doing great! And I can see that she is SO ready for the intensive feeding program! WooHoo!!!! Talking about it in the room with the team was amazing. I just can't believe we are here! I am so proud of her!

The scoop on the intensive feeding program is that there is a waiting list - about 20 kids long. And Harlie's name is officially ON THE LIST!!!

As of right now, it looks like the soonest she would start would be sometime in August. And, when the time comes, they will give me a three weeks notice.

This summer is going to be tricky. I can feel it.

As far as how the nutrition appointment went - Harlie is doing great. She weighs 29 pounds, 7 ounces and is 35.5 inches tall. She is in the 10-25th percentile for weight and 3rd percentile for height. She is the size of an average two and a half year old (she is three and a half).

She was expected to gain 1.2 ounces per week (since our September 2009 appointment), but instead gained 1.35 ounces per week. That is 107% of expected weight gain - which is totally fabulous - especially considering all that she's been through since September.

As far as growing in height - they expected her to grow 0.58 cm per month, but instead she grew 0.45 cm per month (78% of expected growth).

It is weird to hear some of these numbers (like 10-25th percentile) and that she gained MORE weight than expected. She is SO tiny! She appears to be skin and bones! And I had to tell them that she is still wearing size 18-24 months shorts! But, they say she is doing great, so I suppose it doesn't really matter.

On average, she's been eating about 10 ounces (of pureed food and Pediasure) by mouth per day. So the nutritionist recommended a different feeding schedule. One that gets her off her continuous night feeds again (which would be great). So, we'll start working on that tomorrow.

Exciting stuff, huh?
~Christy