Just Checking In

Kimberly - posted on 02/15/2011 ( 12 moms have responded )

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Hi there,

Please visit the Hypotonia Help group and post a status of what's going on with your kiddo these days. Please also post questions. I really want to keep our communication open and see the group thrive. I just know we can all help each other in one way or another.

Wishing you all the best,

Kim Jarrell
Hypotonia Help Admin

MOST HELPFUL POSTS

Kimberly - posted on 05/09/2011

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Have you had a chance to look into the Anat Baniel Method? Check out her website and you can do a search for a practitioner in your area. Also, message me your email address and I will email you some oral motor exercises you can do at home and pass on to your speech therapist to do as well. Hang in there.

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Lucy - posted on 05/30/2011

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Hey Kimberly, thanks for that reply. email is lucywells03@gmail.com im always up for new exercises...

Lucy - posted on 05/07/2011

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Botox did nothing for hid drooling, now he did get a diagnoses for Cp (hypotonic, 0 I GUESS THERE IS ALL TYPES. IM SO NEW TO THIS , I HAVE HIM IN dciu, HERE IN Philly pa, THEY DON'T HELP, AND AT CHOP IN PHILLY FOR PT OT AN SP..hE NEEDS MORE HELP BETTER PLACE TO DO ONE ON ONE STUFF... HAVING SUCH A HARD TIME FINDING HELP ANYONE WITH IDEAS?

Kimberly - posted on 03/30/2011

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It sounds like you are doing everything you can. I think it's a big adjustment for everyone when you have a special needs child. But I am glad to hear your other son is coming around. The biggest thing for me has been patience - and reaching out to other moms walking in my shoes. My husband always reminds me that worrying about it isn't going to help matters or change the situation. I can't wait to get your update on the botox shots. Big hugs.

Lucy - posted on 03/29/2011

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we are up to 4 days a week with pt , speech and ot, about 2 hours daily plus at home we work on everything. he is going for the botox shots in his neck to see if that helps the drooling along with spech, its been a hard road so far, and it is so hard for me to see him struggle in his therapy, and just on a day to day bases and i cant fix it , its very hard for me to come to terms with that. I have CHOP Pf Philly working with us along wit DCIU, i just dont know what else to do. Eating got better, he doesnt spit it out or chock on it any more just messey misses his mouth a lot. his brother is coming around by knowing something isn't right, i guess that will take time too. thanks for the relplay. It keeps me going!

Kimberly - posted on 03/20/2011

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Welcome Lucy. Please give us an update on the DNA test. How many times a week does your son get his therapies? I am so sorry you are having a hard time dealing with this. Maybe you can explain to the 6 year olds that his muscles are very soft and he cannot help drooling or walking differently and ask them to have more patience with him. I hope it gets better. Are you doing any oral motor exercises? How is his eating? textures? I just started oral motor exercises with my daughter and got her an electric toothbrush and am also introducing Dum Dum suckers. She's getting better with both of those.

Lucy - posted on 03/17/2011

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Hi i am new to this group. My 3yr. old has hypotonia along with other problems, the aprixia of the face so he drools alot and doesn't talk much, his balance is very bad walking and we have been in pt ot and speech since sept. of 2010, i see no improvement, the dr.s did a dna blood test that we are still waiting for results. Its very hard to deal with this as a mom because i cant fix it right away. My older son is 6 and his friends dont like to come here because of his little brother, they say hes always drooling on me and walks weird, which hurts my sons feelings, so he gets mad and asks why is he like that... trying to explain to a 6yr old is hard, when i dont even understand myself. so i am joining this group hoping to get some answers and tips on how to deal with all of this.
thanks
Lucy Wells

Tania - posted on 02/25/2011

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HI everyone Tania & lil' Colin here *update* yea were moving rite along and were grtting a nurse ot here soon that we mght get a walker of sorts for Colin he shows great head control ( mostly fresh after nap. ) strong leggs so with a breast plate ( his core is floppy ) we might have him up by his 2nd Birthday. YAY~!

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