Tuesday, August 7, 2012

Feeding Addison...

Not all  that long ago I posted this to my personal FB and wanted to share it here as well.
"Let's talk about Addison for a second... Many people have asked about her feeding tube and wondered why they haven't taken it out yet. Her Cleft Palate surgery was not a cure all, we knew that going into it. That was just a small piece of the puzzle. She is still 100% tube fed, I don't know how long she will be that way. It could be forever, and thats ok. A lot of you know her and know that her feeding tube does not limit her in anyway. She just eats differently, plain and simple.
She has come a very very long way since we started therapy and hopefully with continue to progress. You see her pictures, eating cookies or other things because it's a huge deal for us. As her parents all we ask her to do is try. And that she does. That Oreo? Yeah that maybe the only thing she has put in her mouth all say. The puffs she stole from her brother, yup that's all she wants to eat today. There are only 25 calories in 45 puffs, and other then that they aren't very nutritionally fulfilling.

We can't just give her whatever, because she may or may not be able to manage it. We let her try a lot but only when we can be sure she is ok with it. Many days she fights us and now she is in the phase of wanting to do it herself. We try to respect that as much as we can too. It's all a balancing act. We work at it every single day. Some days I feel like we get nowhere and it's frustrating, other days she does great and it gives me hope.

I don't doubt her ability, but I am realistic. I don't know what her future may hold but I do know that no matter what she will be loved."
Since I posted that we did make some HUGE progress. Addison actually "consitantly" ate whole containers of baby purees for a few DAYS. Enough that I was even able to cut an ounce out of her tube feedings. And then her molars started coming in. AND.... the volume by mouth decreased.
BUT THE KEY IS THAT SHE HASN'T GIVEN UP. Yes somedays are still a fight, ok really right now most days are. But I am starting to see her progress a little more again. As of right now today, she is eating an ounce of food atleast once a day (we are do attempt to feed her 3 times a day, but she won't always eat). She will drink about an ounce of Pedisure 3 times a day, and will take sips throughout the day...
So what's our current "protocol"...OT and I were discussing this in depth yesterday. We are still pushing puree food and have recently started added some dissolvable solids to the purees, by crushing them up and making it more "chewy" for her. (We have noticed lately that she wants to chew alot, thanks to those teeth.) So adding things like graham cracker crumbs or what tried today crumbled Cherrios. And offering her things that are crunchy and can be placed on her molar area and she can chew.
We are still using a vibrating brush for oral stim, but seeing that we need to use it less and less, and her chew tube. Her oral motor is increasing beautifully which is promising. We are also going to try to alternate flavors with her and see if that helps. Our OT comments all the time that Addison is one in a million and what works today isn't always what works tomorrow. So it's trial and error, but we are progressing.
I think I have mentioned before that Addison likes very bold flavors so we are trying to play on that too. Plus she is becoming more and more interesting in feeding herself. She loves to take bites of chocolate chip waffles, but has yet to eat even a fourth of one. And recently she has been sucking on things like carrots and blueberries which is huge because prior to this she has not been able to suck at all because of her Cleft Palate. So we are working with that too and trying to get her to drink from a straw cup.
It is becoming increasingly difficult to keep her sitting still and entertained while connected to her feeding tube/pump, so we are working on some new games and skills. I bought both babies a Magna Doodle to draw with and we've been playing with crayons. Plus working on how to put things in and out of containers. We are reading books now too. Her (well Blake's too) favorite book is "Have A Ball" and she loves pointing at the ball and "reading" it to me... Her version goes something like this "Ball, ball, ball" ... turn page... "Ball, ball, ball, ball"...the end.
Her verbal skills are really picking up, which is exciting for us all. And I am a little nervous because she is getting closer and closer to WALKING....which means I will have TWO WALKERS!!!

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