Looking for advice - low muscle tone
Hi! I don't get a chance to post here often, but I have always found great support here! My b/g twins were born at 32w6d and are now 14 mo actual (12 mo corrected). They have always scored between their adjusted & actual age at their NICU follow-ups and my DD is actually closer to on tract for her actual age (she is crawling, pulling up everhwere, cruising, standing for a few seconds without holding on to anything). My DS however -- at their 12 mo f/up he has fallen off the charts for gross motor skills. He is very vocal and can do almost everything on the developmental milestones "list", however when it comes to moving around we feel like an epic fail. He can't go from sitting to laying (or vice versa), rarely rolls (although we know he can roll both ways), instantly rolls to his back when we've tried to do tummy time (bascially from 6 mo on), doesn't pull himself up, can't crawl and just in the past 2 months or so has actually been able to put weight on his legs. We were referred to PT and at his assessment for that they determined that he bascially has low muscle tone (and a lazy attitude!) -- they didn't feel there was anything more "serious" going on. We were on a wait list for 6 weeks to get him scheduled for PT and at that we have only been able to get him in every other week (they want to see him weekly, but don't have a spot open for him). He had his first appointment yesterday and cried through the whole thing. We have been doing exercises with him for the past 4 months to try to get him interested in being on his belly, using his arms more (he will sit unassisted and reach for things, he can lift what I would call "heavy" objects for his age), balance and using his legs. We've seen marginal improvement (i.e. being able to put weight on his legs) and they basically just did the same exercises we've been doing all along in his first PT session yesterday. They didn't really give us any "homework" -- just try to do the same things at least an hour a day. I know this will take time, I guess I'm just getting really nervous.
Bennett is starting to get so frustrated. I think he thinks he should know how to do this. He'll be playing with a toy and will just scream out and put his head & arms forward on the floor. He has started to bite. I just wish there was something more I could do for him! Has anyone been in a similar situation? Any success stories out there? Advice? Resources online I haven't tapped into yet (i.e. with other exercises, etc.)? I am trying to keep a "he'll catch up on his own time/terms" attitude, but he's really starting to break my heart. Thanks for the support (and sorry this is so long!).
Sara
Re: Looking for advice - low muscle tone
My daughter turned two in January. She has global hypotonia (low muscle tone). She started walking in late February. It's hard for awhile because progress can be really slow but if you continue to work with him he will start to get stronger and do more things.
My blog (in my signature) has a lot of suggestions for ways to work on various gross motor skills. Click on the development link to find all of the suggestions. Hope they help!
If you have a specific area you want to work on let me know. I can give you some specific suggestions based on what I have done with my kiddos.