The procedure went a lot better than I thought it was going to.
The worst part was the chest xray they wanted to take of Hannah before we started anything. We basically had to hold her down by her legs and arms, and she was hysterical. That part sucked.
Then, they put the xray table on its side (up/down) and had this specialized infant seat next to it where she sat buckled in. They then put the xray machine on the other side, so she was sandwiched in.
Using Hannah’s bottles that I brought, they tried various consistencies of barium from very thin (like formula) to pretty thick. I also had to force feed her two spoonfuls of barium-laced applesauce, which I only was able to get in her mouth when she was screaming. But this part of the actual test only took about 15 minutes.
PRELIMINARY RESULTS: We will get the official results in about a week, but the preliminary results look really good. She has no swallowing difficulties or aspiration of fluid into her airways during her feelings. With the very thin formula-only, the speech pathologist said it looked like it was trying to go down the airway, but it never did. RECOMMENDATION: Do not give Hannah straight thin juice or formula (if we do give her juice, we are to add applesauce or rice cereal or something like that. We are to continue with the rice-cereal formula, and she also approves of using the baby food in the formula to help make it thicker.
PRELIMINARY RESULTS II: Hannah does not use her tongue correctly during feeding. She curls it in a weird way, which explains why she dribbles so much when she drinks her bottle. It is something she has done since birth. Also, once she gets solids in her mouth, she doesn’t know what to do with it, which is why we have such a huge problem feeding her solids. Once she does get the solids past a certain point, her involuntary swallowing muscles kick in, and there is no problem with the food going down, so it is definitely not a swallowing issue. However, whether or not this is neurological is unknown at this time, so I have to ask Dr. Schiffmann, Hannah’s neuro. It could be that she just needs to be taught somehow on the correct way to eat. Either way, I’ll find out.
OVERALL: I’m very, very happy with these results. I was so worried about swallowing difficulties because we know that is a big Gaucher’s Disease symptom. NO swallowing difficulties seen in today’s exam, and no aspiration of fluid into her airways. This is HUGE positive news for me.
Tomorrow we see her pediatrician in the morning, and she has her Early Intervention IFSP (individual family service plan) evaluation to see how she is progressing developmentally. At 4 months, she was 2 months behind in almost everything (except socialization). I wonder where she will be tomorrow!
This is great news!!
great! I wonder with her tongue (not seeing her so only a suggestion from other people I know) if the tissue that attaches it to her lower jaw is too short? Someone I know had this with their son and had to have it clipped as an infant because he couldn’t suck right. ??? something to maybe have the doctor check out unless they gave you more information about her tongue thing that would make this not an issue.
Seeing that now at 8 mos she is sitting up and trying to roll over…that has to put her up from last time physically!
Awesome! I wonder, when you said Hannah curls her tongue weird, does she have a tongue thrust? I still have it, and I turned out okay. 🙂 For some people it just never goes away. I hope B’s swallow study goes as well as Hannah’s! His is Tuesday of next week.
Good luck with the evaluation tomorrow!!!
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Good luck with the early intervention tomorrow!
Bertrand’s getting his swallow study some time next week.
That is just good news! I’m still smiling! I wonder if she is tongue tied. O was, and she curled her tongue weird and once they clipped the attached tissue underneath, she did fine. Although, I would assume they already looked at this for Hannah. Look at me trying to second guess the Dr!
Awesome and good to hear. 🙂
So great to hear that you got good news with the swallow study. Hannah is in our thoughts and prayers daily.
Blessings!!
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oye. Poor Hannah has been through so much.It’s always to hear about the good stuff.
Hang in there.
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It sounds like you got some good peace of mind. As for the weird tounge curl that can be worked out with some speech therapy and such. I think its great the doc thinks adding solids to her bottle is a good thing, just think of it as a baby smoothie.
Hi!
Oh, what a good news!
I’m so happy for you!
Depending on the way she curls her tongue, she can be helped.
One of my kids had problems too and when we started to spoonfeed with a very thick spoon, pressing his tongue down before putting the food on it, he learned very quick to hold his tongue down when he liked the food.
Kids are clever. LOL!
I’m sure Hannah can be helped.
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WONDERFUL!!! This is BY FAR the best news I have heard all week!!
Glad to hear you got good results!!
I am very glad to hear this news… Hannah is an amazing baby. I’m sorry it was so upsetting for her to take the test, but I’m glad everything turned out positively. Does she have to repeat the test at certain intervals?
You guys have a great weekend!
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I have had this test… So not fun! But it sounds as if Hannah handled it like a trooper 🙂 The results sound overall really positive too!!