Ava had her Early Steps eval yesterday, but I got the report from feeding eval she had last week in the mail yesterday too, so I'll start w/ that one. I typed it all out yesterday and lost it!!!:favorites21:

First, the therapist is really concerned about the pain she saw Ava in after eating...she wants us to see the GI to address this, even though I already have and they basically told me that there's really nothing they, or I, can do to help her when things get "stuck" like that. But, I'll talk to them again on Friday anyway, when she gets her button:party21: :party0049: :party21: , and we'll see how it goes. The therapist is just worried that if it keeps happening, that Ava's not going to make much progress w/ the feeding therapy, since bad experiences one on top of the other will just further reinforce the aversion to food.

Findings: hypotonic oral/facial tone, oral hypersensitivity, communication suspect, severe feeding difficulties (duh), severe oral dysphagia (I've got to goooooogle this one, unless one of you lovely ladies chimes in to help me;-) ), interactional/behavioral issues, problems with child gagging self:misc58: , reduced chewing skills, and sensory issues. And ROFL, the report also states "difficulties setting limits, independent activity allowed, messiness allowed, limited repertoire of strategies"...um, yeah, those are all about me!:rolleyes: But, that wasn't really a great representation of our "skills", if you know what I mean...we were in a foreign environment, not our own house and routine, Ava was sleepy b/c she had refused to nap, she had a major, major episode, and I was about as stressed as a mom can get...it's horrifying to watch her gag and choke like that, especially when it goes on for over an hour and there's nothing I can do to "fix it". So, yeah, it probably didn't really look like I was "in control", but hey, I wasn't at the time, so it's ok.
"The Plan" calls for: oral motor and feeding treatment, minimum twice a week, 30 min sessions, or one year, with a re-eval after one year. Then there are like 2 whole pages of specific goals and techniques after that. Like the therapist said to me, we've got A LOT of work to do! :shock: :smt100 :shock:

The Early Steps eval went really, really well yesterday...it was our coordinator, a nurse, and a PT that came, and even though Ava was about to crash on the couch w/ some Sponge Bob when they finally showed up 45 min late, things went really well. The nurse and I talked about history, etc. while Ava and the PT played on the floor. Her communication skills are at a 12 mo level, even though she's learned 2 new words this week (cheese and shoes, rofl), but we'll be addressing that in feeding therapy w/ the SLP, so they weren't concerned about that. They agreed w/ me completely that a lot of the things she was delayed doing physically were directly related to poor nutrition and dehydration, since so many of the things I was concerned about (namely walking) are catching up pretty quickly. So no PT needed at this time!:yahoo: They did however recommend that we start some OT to address the sensory issues she has. I guess I never really focused on these...I've always been so focused on the reflux that I never really realized that she HAD any sensory issues! But, I guess it makes sense! BTW, Ava has no oral aversions at all...food only. The SLP and the Early Steps team were both surprised at this...things (toys, pacis, dog food even) go straight to the mouth all day, but it's only food that's not even allowed in her general vicinity. The OT will be done at the same satellite of All Children's Hospital where the feeding therapist is, so I'm *hoping* that *maybe* I can combine the 2...like do 2 one hour sessions per week w/ both therapists there at once??? I seriously doubt it works that way, but it's wishful thinking...otherwise, we'll be spending all our time in therapy and I'll NEVER be able to get anything done!:banghead: I have to call to set up an eval w/ the OT, and then I guess we'll go from there.

Man, why couldn't she have just outgrown this?!?!?!:dontknow: :dontknow: :dontknow: :dontknow: :dontknow: :dontknow:

Gosh it sounds very confusing to me!!! Seems like there will be alot going on for you and Ava. It's all good though and I bet it will really help her progress.
Hope things go well and KUP!

*phew* I'm exhausted just reading all of that...can only imagine how you feel! :hug:

You're on the right track, Linds....it's all gonna work out! :)

Ava IS outgrowing it, Lindsay. She just needs some help getting there.

Sounds like you had a productive day. Won't the therapists come to your house??? Catherine's do (and also did for her evaluation, so she'd be in her natural environment).

The Early Steps eval was a home, but not the feeding one. I'm going to ask and see what kind of arrangement we can come up w/ to possibly set up some "house calls". I do think we could be more productive at home!

Sounds like the feeding eval was really thorough. Dysphagia is swallowing problems. Do a search here -- it's come up a lot recently.

It's great that you'll essentially be doing OT and feeding therapy hand in hand. Working on sensory issues should go a long way in helping Ava eat.

**whew** what a long list of things Linds. ((((hugs)))) that is good that no "oral aversion" except for the food. Our ped told us that a "true oral aversion doesn't even mouth toys"

LOL about the mess. Those evals. stink, like you said, you are in a weird place, weird things, weird people, come on. ;)
All in all, good though! That is great!!! :party21:

I think the most important thing is....did Ava like the specialists that will be working with her?

Best wishes.
Jean

That does sound like a lot, but now that you can see what needs to be done for her it's going to be so much better once it gets going. I'm sure she will be fine ..she is already better thab she had been without OT or PT. Sounds encouraging to me Lindsay!:smt036

Wow, that's a lot to take in but it sounds like they have a great plan for her!!! She's already come so far just since her fundo:D

Thanks guys! We're excited to get started, and Ava LOVED them all! We see the feeding therapist on Tuesday, so I'll set up the OT eval when I get there...I'll keep ya posted!

you are going to be a real busy women its fantastic that she and you are getting the help that is needed

ROFL Yes why indeed do some outgrow it and others are stuck with it.

All in all it sounds like a very thorough report, but although you are going to be busy girls, it sounds like it can all be fixed in time.

I am sorry to hear about her development delay due to poor nutrition, but if it helps Parker was VERY similar, and he is coming on leaps and bounds now, he was always a bit slower to start something, but once it was learn't he picked it up great guns, I am sure that Ava will be the same.

Hopefully it's all smooth sailing from here on out!


First, the therapist is really concerned about the pain she saw Ava in after eating...she wants us to see the GI to address this, even though I already have and they basically told me that there's really nothing they, or I, can do to help her when things get "stuck" like that. But, I'll talk to them again on Friday anyway, when she gets her button, and we'll see how it goes. The therapist is just worried that if it keeps happening, that Ava's not going to make much progress w/ the feeding therapy, since bad experiences one on top of the other will just further reinforce the aversion to food.


Now I'm confused. Our therapist told us the same thing, progress isn't going to be made because of pain and expected pain and we should go with the g-tube. Everyone here seemed to think she was an idiot and we should try again. Her peds GI and surgeon said the same thing...

I know Lena, I worry about it all the time...when she has a streak of a few good days, when she's actually open to the idea of eating a bite or two, something happens that totally sets us back. I hope we can work thru all the issues she has, but if the pain continues (even if she just THINKS it's going to hurt), we're going to have a really, really hard time. We'll talk to the GI on Friday when she gets her button to see what his take on the whole deal is (again!).