Friday, February 26, 2010


SO, I am not sure how much of Ava's palate "issues" I have actually gone over and covered for everyone, and especially on this blog. So I suppose I should start at the beginning.

We first saw milk come out of Ava's nose the very first time she ate, only hours old. It happened while eating, as well as afterwards, if she spit up half of it would expel via nose. We mentioned it to the nurses who passed it along to dr's. They would take a quick peek down her throat and in her nose, note that there was no cleft or severe palate issues, and leave it at that. "I cannot see or feel any abnormalities" couldn't even begin to tell you how many times we have heard this. Right. So every baby spits up through their nostrils? Didn't think so. We didn't push it nearly as much as we should have, though. We took their word and did the "wait for her to grow and watch to see if it's something she "grows out of" game. Though we did continue to bring it up, only to be met with the answer of, "well I see it noted that no cleft or abnormal palate was noted on observation".

Fast forward to a few weeks ago, at Ava's private speech evaluation with a wonderful therapist Ava saw before she went into the Alta program. This was no typical, 15minute, let's hurry up and get this over with(how it often seems) evaluation. This Speech Therapist really took to actually evaluating Ava and noticed a few things that sent up immediate red flags. She asked me a few questions and continued playing with Ava. Then she asked if it was okay to look into Ava's mouth to check out her palate. Ava was very willing(she trusts her therapist) and after a somewhat lengthy look around, she said while she is absolutely not a doctor or specialist in this field, she is noticing some abnormalities going on in there. We discussed what they could be, what it would mean, what her part in everything would be, how I should approach this, etc. She was so very helpful. Someone was finally listening to our concerns and validating them. She offered to send in her findings once we got the referral for ENT.

Fast forward to today, the day of Ava's appt with ENT. We also decided since the school was unsuccessful in getting Ava to participate in a hearing test(go figure, typical Ava) that we would go ahead and try a hearing test there. So we got that all set up, and went over a few questions and concerns, mostly about her ears. We mentioned the palate so he does the usual look and feel, says everything feels and looks fine and continues on about the ears.

Frustration. I am so absolutely frustrated at this point. I mean I specifically tell this specialist that my almost four year old cannot blow a bubble or make certain sounds, that it is PHYSICALLY impossible for her, and that liquids STILL come out of her nose when she drinks. And he just more or less brushes it off again. I tried to calmly state that this needs to be further evaluated because there is obviously SOMETHING going on. And that her speech therapist didn't just look, she had Ava talk and make certain sounds while looking to see how the palate was moving, and that she absolutely saw something ABNORMAL going on. What she thought it was wasn't necessarily important, but she even allowed me to look in both her mouth while making an "aaaahhhh" sound and then in Ava's mouth while Ava made the same sound and I could clearly see discrepancies. So I wasn't leaving that office again without a better answer/solution. Only then does he mention that we will have to get another referral to an actual speech pathologist or craniofacial specialist. And that they would basically further investigate what could be going on.

I understand that we are her parents, we are her advocates, etc. But what happened to doctors who go above and beyond. Or those who just actually do their jobs and continue investigating until the "problem" is solved, or in the very least addressed?! I honestly just do not understand.

So now we sit and wait to hear back about the new referral. Which isn't going to be the easiest to get because there are no specialists in our "group" they are all at Sutter and UCD. Which means we will undoubtedly be referred to a UCD doc.

Oh, and Ava sort of passed her hearing test. She has small ear canals and it makes testing and results difficult, we were basically told. Sigh. Plus, Ava seriously really really REALLY doesn't like doctor offices. Nor does she trust one single word out of our mouths while IN any doctor's office. Making it impossible to console and convince her that they are only going to look in her mouth and ears, no owies, etc. I know I was just on one, but I could REALLY use a vacation. ;)

1 comment:

Stefenie said...

{{{{HUG}}}} I think you definitely need one of those.

It is so incredibly frustrating for me reading some of the stories of what other heart moms go through. We have been fairly fortunate to have received docs that go above and beyond including Logan's pediatrician that allows us to come to his house at midnight to check Logan out. It is a shame that there aren't many docs anymore that give 150%. With everything that we have to deal with as parents to special needs children they should be doing lighten our load.

Hang in there!! I am praying for Ava to get the care she needs!

Stef, Ryan, Wyatt and Logan