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Friday, April 13, 2012

Another farewell

Life has been busy the last couple of weeks and I've missed some things so here they are. :)
We had our last visit with our long-time feeding therapist Miss Wendy last week. It was another bittersweet farewell. It makes me sad when we have to say goodbye to people that have been taking care of Raya since we started all this craziness. Raya has been seeing Miss Wendy since June of 2010 when Raya was almost 7 months old. She was with us back when Raya would gag and vomit just from sitting in the high chair or seeing a spoon come towards her face.
I often wondered why we even bothered with feeding therapy for a long time. Raya just plain didn't want to eat. She didn't care if she had anything to do with food, water, formula, or any type of eating utensil, mouth cleaning utensil, or drinking vessel. A lot of our visits consisted mostly of Wendy and I talking about things I could try with Raya and me updating her on Raya's latest vomiting adventures. She always let me unload my worries and frustrations on her and gave me suggestions of what to do, and sometimes just threw her hands up in frustration right along with me. Raya and Kaida love Miss Wendy!
For the past few months we've been seeing 2 feeding therapists. Neither of them had weekly availability so they alternated weeks so that Raya could still get weekly therapy. Last week I got a phone call that our second therapist just had a weekly opening, so it was time to say a bittersweet farewell to Miss Wendy. We had our last visit with her Thursday. Raya decided to send her off the same way she came by having no interest in food that day, so instead of food she just played with the cute magnetic dolls that Wendy brought her. :)
We will miss her but we agree that having the same therapist coming every week will be better for Raya and we appreciate everything Wendy has done for us!

I made an exciting discovery last week. Raya's hair is sort of long enough for pigtails!
There's just something irresistable about a toddler with little wispy pigtails. :) It's taken us WAY too long to get to that point but I'm glad we're finally there. Now if she would just leave them in!
Even her sour cream face is cuter with pigtails. :)

I also made a not-so-exciting discovery this week. More blood coming out of Raya's stoma, puffy scar tissue around the stoma, more goopy discharge, a little bit of redness around the tube off & on, and she tells me sometimes that it hurts when I'm touching the tube. This saga is still unfolding so I'll save it for another day. We're definitely going to be switching to an AMT Mini One button as soon as it can be ordered though, and possibly going to a different size that's a little bit bigger just in case the current tube is too short & causing some of the problems.

1 comment:

  1. Such adorable piggy tales! My GI told me that it is "normal" for my stoma to be goopy. However, after work with a wound specialist, I now have a stoma that doesn't hurt all the time! I hope Raya's stoma feels better soon!

    Hope y'all are having a good week!

    Katie :)


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