I've been considering stopping Vital Stim for hte last month. Monday was just about the last straw. We went in and Logen screamed for about the entire hour. It was misrible. I talked to his other SLP and the OT yesterday to see what they thought about stopping the VS. They both agreed to wait until we have another swallow study (working on scheduling it). However, we have seen NO change in the last several months. The only thing that changed for the better is his tongue. It is now able to come into a neutral position. This happened after 1-2 months of VS. We are now working on 7 months of VS.
Things that have changed- and not for the better.
1) Logen has increased the amount of drooling
2) He was able to drink from his special sippy as well as a Nuby cup. He had a little spillage from the nuby, but was constantly improving. Now, Logen has a hard time sucking from the Nuby. He went 12 hours and had maybe 4oz one day last week b/c I only offered him the Nuby. I don't know if it's b/c it's suddenly harder for him or if he was just being stubborn.
3) So, his sucking has 'regressed'.
4) Eating altogether has gotten worse.
5) I know he's still aspirating.
His therapists said that they feel language is more important at this point. I feel that he's regressed back to before we started VS. I was so excited to start this therapy- we knew it was experimental in ped's, but were willing to give it a shot. Now, I'm kinda mad at myself for trying it. Logen was doing awesome in the eating dept. He'd gone from honey thick to nectar before VS. I'll let ya know when we do the next swallow study.
Suzanne's Baptism 1992
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Linda Anderson sent Suzanne this picture of the family on her baptism day
on February 15, 1992.
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5 months ago
Oh my gosh. I'm so upset to read this girl. I so wished you didn't have this outcome. Is Logen taking anything for his secretions? Robinul? Write me...let's talk.
ReplyDeleteI'm sorry it's not working out for him. I hope that something does help, and that things improve again.
ReplyDeleteWhat 'special sippy' does he use? Jacob chews the nuby's when he's allowed to drink. (he's an aspiration risk right now) And would love something else that doesnt require a suck.