I’m not going to drink over it...
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Join Date: May 2011
Location: Los Angeles, CA
Posts: 705
Originally Posted by newhope01 
I’m falling victim to dr. Google and don’t like what I’m reading.. looks like this could be permanent if it doesn’t resolve itself in therapy.
Starting to let it sink in and I’m not too happy about any of this.
My poor baby.. I wish there was something more I could do then wait for the referrals to be processed.
Starting to let it sink in and I’m not too happy about any of this.
My poor baby.. I wish there was something more I could do then wait for the referrals to be processed.
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Join Date: Sep 2009
Posts: 1,122
Originally Posted by babycat
Oh girl, stay OFF Dr. google. I swear they put up the worst case scenarios as being likely just to further stress already freaked out people. I know it is easier said than done (trust me, I will spend hours on there obsessing) but it truly accomplishes nothing. Check out from there, try to relax and you can deal with things as they come. Breathe my dear. breathe.
But, I’ve got to trust that the neurologist is right and she will be caught up by the time she can walk with the help of physical therapy.
Just bummed. And I don’t want to deal with people’s questions about her walking, crawling, etc. I’ve been changing the subject but eventually I will have to explain what’s going with her.
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Join Date: Apr 2007
Location: Australia
Posts: 211,456
Yeah stay off Dr Google
true story...as many know I have cerebral palsy which includes a lot of low muscle tone/wastage.
I was 3 and not walking - someone gave my folks the address of this old guy - a physio - and I was walking in 6 months.
This was 50 years ago
There's always hope and I think your daughter has excellent prospects for a full recovery
true story...as many know I have cerebral palsy which includes a lot of low muscle tone/wastage.
I was 3 and not walking - someone gave my folks the address of this old guy - a physio - and I was walking in 6 months.
This was 50 years ago
There's always hope and I think your daughter has excellent prospects for a full recovery
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Join Date: Sep 2009
Posts: 1,122
So a little update on my daughters condition:
Its been a little under four months since she was diagnosed and about 3 months since she started PT. The first therapist did absolutely nothing and just observed her playing with me. Said there was nothing wrong and cut her appointments down to one follow-up four weeks later. Mind you she couldn’t crawl or feed herself.
Luckily, a government program kicked in and a therapist came out to evaluate her condition. Cognitively she’s on track but she was rated at having a 9 month level of development for gross motor skills and speech when she is physically 13 months at the time. She scored half a point to disqualify her for services so the therapist “fudged her score a little” so she could qualify. Great! They’ll even go to her daycare! But the therapist got sick then we went on quarantine and now my daughter has not had a therapy session since. I’m frustrated.
She feeds herself now and she is pulling to her knees but when she tries to pull herself up, her little legs give out and she collapses. She’s happy and smiles. She knows her shapes and can say “ma-ma” and “bye-bye” but no other words. Can’t hold a bottle or sippy cup but she tries.
Then I see younger babies doing lots more than she can and get sad I can’t help her catch up and therapy is not an option right now. Don’t know when she will get professional help. I’m bummed. But my sadness is assuaged when she smiles and crawls over my belly to snuggle. She couldn’t do that a month ago.
Thanks for letting me get that all out.
Its been a little under four months since she was diagnosed and about 3 months since she started PT. The first therapist did absolutely nothing and just observed her playing with me. Said there was nothing wrong and cut her appointments down to one follow-up four weeks later. Mind you she couldn’t crawl or feed herself.
Luckily, a government program kicked in and a therapist came out to evaluate her condition. Cognitively she’s on track but she was rated at having a 9 month level of development for gross motor skills and speech when she is physically 13 months at the time. She scored half a point to disqualify her for services so the therapist “fudged her score a little” so she could qualify. Great! They’ll even go to her daycare! But the therapist got sick then we went on quarantine and now my daughter has not had a therapy session since. I’m frustrated.
She feeds herself now and she is pulling to her knees but when she tries to pull herself up, her little legs give out and she collapses. She’s happy and smiles. She knows her shapes and can say “ma-ma” and “bye-bye” but no other words. Can’t hold a bottle or sippy cup but she tries.
Then I see younger babies doing lots more than she can and get sad I can’t help her catch up and therapy is not an option right now. Don’t know when she will get professional help. I’m bummed. But my sadness is assuaged when she smiles and crawls over my belly to snuggle. She couldn’t do that a month ago.
Thanks for letting me get that all out.
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Join Date: May 2009
Posts: 14,937
Cognitively she’s on track but she was rated at having a 9 month level of development for gross motor skills
That's actually good news.
And it's certainly better in my opinion to be on track cognitively with a 4 month delay in gross motor skills, then having it the other way around.
That's actually good news.
And it's certainly better in my opinion to be on track cognitively with a 4 month delay in gross motor skills, then having it the other way around.
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Join Date: Sep 2009
Posts: 1,122
Originally Posted by sugarbear1
Can you call your doctor to see if there are any video meetings available to teach you what to do to help her strengthen her muscles now?
Samantha
Join Date: Sep 2017
Posts: 2,031
Originally Posted by newhope01
Turns out my little one has hypotonia. But it should be corrected with physical therapy. She also was referred to a food therapist to help with her refusal to eat any solids.
The neurologist assured me that it’s nothing I did or didn’t do and that her condition will likely resolve within 3 months of physical therapy.
I have to take her for a blood draw for FIVE tests!! I don’t know how they plan to get that blood. Should prove to be fun..🙄
The neurologist assured me that it’s nothing I did or didn’t do and that her condition will likely resolve within 3 months of physical therapy.
I have to take her for a blood draw for FIVE tests!! I don’t know how they plan to get that blood. Should prove to be fun..🙄
and tell you to never lose hope. 
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