by Sarah | Oct 22, 2007 | Hypotonia
We (finally) have SOME answers with K’s feeding issues! Turns out that what we’ve been told for months is WRONG!! Everyone kept saying her tongue lateralization (chew) was fine…and that something was happening with the swallow. It was how it looked to us all. Well, that was totally wrong. The reason why it looks like things were going down so rough is because…they ARE! K isn’t chewing! She’s sucking on the food, then swallowing. Apparently, her suck looks like a good round chew because she struggles with the suck as well. So, everything she’s been eating, she’s been swallowing whole! So we have to re-focus and re-double our efforts in a totally different way.
1. Don’t feed her a bottle first at actual mealtimes. Have her eat the solids first and finish off with a bottle.
2. Try high calorie yogurts and cottage cheese (with fruit for sweetness), etc.
3. Run our dinner foods through the food processor
4. Back off baby food as much as we can.
5. Work on using “stick” foods (cheeto’s) to try to get her to bite with her back ‘teeth’ (she doesn’t have teeth yet, but using that area).
6. Do NOT let her eat unsupervised (obviously)
7. Be aware that a “safe” bite size for her is the same size as the tip of her pinky…which, with K, is less than a centimeter, more like a millimeter.
8. Make sure that she’s getting at least one pediasure a day (she gave us a TON free…YAY)…but otherwise focus on solid foods so that she learns how to chew/use her oral motor muscles.
So. Those are a light dose of the tips she gave us. I’m SOOO glad we went. We go back in a month for a follow up visit. We’re supposed to have her weight before then (works out that she has her nutritionist visit right before).
It’s nice to have some answers!!!
by Sarah | Oct 11, 2007 | Hypotonia
We’ve been asked to get a referral for yet another specialist for K. This time for an orthopaedist.
Today we had PT for K. During the session, I don’t know why I thought of it, but I grabbed my cell phone. I showed her a video I’d taken about two weeks ago of my girls. In it, you see many of K’s issues presented rather boldly. She places her left foot poorly and falls to the ground. She struggles to get up because her left leg is in the air and she doesn’t have the strength to get the leverage. When she does get up she walks to the camera, and then away…and you see her ‘drunken sailor’ gait and how she doesn’t walk in a straight line. At the very end, you see her chase M right up until she stops short before walking on a blanket (an uneven surface).
I found out how good I’ve become at detecting her issues because without a word from me, the PT commented on everything I saw in the video. She became really concerned. We started talking about the issues that she wasn’t resolving, and how she’s smart enough to learn what hurts/makes her work enough to refuse to do it when she sees the toy again…but she can’t seem to pick up on things like proper distance to an edge of a step, or stepping down without turning her foot in, or judging proper step distance.
She has reccommended a vision check. We don’t think there are any issues there, but we want to rule out poor depth perception as a cause for a few of her issues.
Then she reccommended the orthopaedist. She said that he “may” say that it’s solely a strength issue and tell us to continue with the strengthening exercises. BUT, that he may reccommend braces. We’ve expected, and feared, this. All we can do now is make the appointment and hope for the best…but I can’t tell you how I’ve worried about having to make this call. More so than I was concerned about the neurologist.
by Sarah | Sep 17, 2007 | Hypotonia
We have reached that terrifying point. The doctor’s are baffled…the therapists are baffled. We ALL know there’s an issue…but not one person can pinpoint what that issue is.
The issue is with K’s swallow. She chews GREAT. Her tongue lateralization is perfect. She goes to swallow and everything falls apart. You can see the struggle on her face to swallow. She blinks, winces, and sometimes even tears up. We reached the breaking point over the weekend.
Thursday I tried to feed the girls some PopTarts (they are an FTT parents dream – but that’s another post), as I have been for weeks. M was eating away happily. K was eating away happily, but then it all came tumbling down. K must have had a terrible swallow…because suddenly she was screaming top of her lungs. I turned my full attention to her and she’s spitting out a bite of PopTart. I try to comfort, and she refuses most of it. I try to offer her more PopTart, she screams again. We finally get settled and I try to offer her more PopTart. She takes a bite out of instinct, but the minute it hits her tongue the screaming starts again…like I’d poured acid on her tongue. She refused any further bite of it.
We switched to yogurt, and she was fine. Since then my nearly-18-month-old has been on BabyFood alone. We tried a nice soft cheese sandwich with her sister on Sunday and didn’t get halfway through before she was gagging and spitting it out. She just can’t eat solids anymore. We’re back on stage 3 babyfood diet. We’re using duocal to boost its worthiness and praying for answers.
As of this point the GI doesn’t know. Our speech therapist and occupational therapist are at a loss. The GI is scheduling us with the ST of the children’s hospital (since we’d had swallow studies done just within the past six months w/o any answers)…and hoping that we’ll get answers that way.
So…we’re now at a point where there’s no answers…and none too close in sight. It’s…an uncomfortable place to be.
