Hello, I am new!

iVillage Member
Registered: 08-23-2006
Hello, I am new!
10
Sun, 05-18-2008 - 6:56pm

Hi, my name is Melissa.

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iVillage Member
Registered: 06-28-2006
Sun, 05-18-2008 - 8:16pm

Hi,


Just want to take a second and welcome you here. You are at the beginning of a road which so many of us have traveled with fear, anticipation, and worries, but the good news is, we have all, along with our kiddos made it thru this, as will you!! I totally understand the whole not wanting to be around "typical kiddos" rigt now, but you will get to the point where you wil be ok with that....your little one is still so young, and a lot can happen with just time and therapy (PT, OT, etc....)


Marina is the cl here, and I am sure she will post to you as soon as she gets a chance, but I wanted to also welcome you to join us at the Child hypotonia board -this is for kiddos with low muscle tone....I think you will relate well to a lot of the parents over there....I am the current cl there, and I have 2 kiddos with low muscle tone, and developmentally delayed.


Definitely hope you will join us, and we look forward to hearing more about your little one!


Hugs and prayers,

Brandi & Caleb (3 years old - mild cp(supposedly), mild pvl, hypotonia, gdd & who knows what else!)

 

iVillage Member
Registered: 01-13-2008
Mon, 05-19-2008 - 12:37am

Welcome Melissa!!


your little boy is too cute! So sorry your dealing with all of this, and to have no good answers yet. ive been there and still going through it a bit myself!


hang in there!


((hugs))

siggie15.png picture by mommaboo06

iVillage Member
Registered: 03-27-2003
Mon, 05-19-2008 - 7:12am

Hi - Thanks to Brandi for welcoming you, and yes - you should jump over and look at the hypotonia board, too.

iVillage Member
Registered: 08-27-2007
Mon, 05-19-2008 - 10:42am

Hi and welcome. :)


I agree to pop over to the hypotonia board. I lurk there b/c of Bryn (Core Hypotonia and Oral hypotonia) and its a nice place. She got out of her Benik

              *Praying for my best friend, my Dad*


 &n

iVillage Member
Registered: 08-14-2005
Mon, 05-19-2008 - 10:48am

Hi Melissa and welcome! You've definitely found the right board. I found it when Megan was around 18 mos and developmentally delayed. She started EI around 8 mos - was referred at her 6 mo appt. She too was very low-toned in her trunk especially. That caused her to walk really late - not until age 4. She sat at 18 mos, pulled to stand at 33 mos. We stayed with EI, but also did private PT. With a hypotonia dx, they paid for 20 visits/year, with a copay.

Megan also had the food issues big-time. We saw a nutritionist, and she basically survived on milk with carnation instant breakfast, and a vitamin supplement for a long time. We did do stage 2 veggies with melted butter, and other things to get some veggies and additional calories in her.

We all wonder "why", and Megan still doesn't have a dx. We've had tons of testing, but 50% of the time, I've been told, the dr's never figure it out. So, I too, say move forward, but I understand that it's hard not to wonder.

I could not handle being around typical kids Megan's age, and still prefer to have playdates with other kids with special needs - as that way moms can chat and have more in common. It was just too annoying to me to have moms complaining that their kids talked too much, or they crawled too fast and they couldn't keep up with them. :-(

Welcome!

iVillage Member
Registered: 08-23-2006
Mon, 05-19-2008 - 1:07pm

Hi Carol...


Thanks for the welcome! I have a question, do you think that Megan benefited more from the Private PT

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iVillage Member
Registered: 08-23-2006
Mon, 05-19-2008 - 1:24pm

Thanks to everyone for the warm welcomes!

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iVillage Member
Registered: 03-24-2007
Mon, 05-19-2008 - 3:33pm

I can relate about not fitting in your birth boards.

iVillage Member
Registered: 08-14-2005
Mon, 05-19-2008 - 3:47pm

Hi. We would have done PT every week, but our insurance would only do 20/year, so we went every other week, then tried to schedule it so that it was the week that she did not get her EI therapy. And make sure they give you "homework" - stuff to do every day with Logan. I think that's what is really valuable. Megan most enjoyed the work we did on the exercise ball. But I really did think the private PT was a lot better than the EI PT. I've seen that EI therapists vary a lot in experience.

GDD stands for global developmental delays. From a website:

"Global developmental delay affects one to three percent of all children under age 5. It is defined as significant delay in two or more of these developmental areas: gross/fine motor, speech/language, cognition, social/personal, and activities of daily living."

iVillage Member
Registered: 08-04-2006
Tue, 05-20-2008 - 5:38pm

Hi Melissa,

Welcome!
This is a warm and comforting place.
My girl Devon (2 yrs) is the reason I found this place when she was about 7mos.
D has hypotonia and dev. delays and no one knows why, though not for the lack of trying!
In the beginning, I really didn't want to know to why, I just wanted the low tone and delays to go away.
Now, I want to know why. I do. I guess its closure for me? My soul cannot rest until I know.

Having said all that, Devon is progressing, albeit slowly. She can sit but cannot get there on her own, unless she is on her back. She can finger feed and do some spoon feed. We have very recently been blessed with assisted standing.

I too, cannot relate to the birth boards in any way shape or form. I feel like an alien there. Get together with friends (moms of typical babies) are kinda tough but I keep doing them because I don't want my life to be mainly special needs. I still don't really enjoy these gatherings but I don't like the thought that I exclude my friends either. UGH!

Anyway, your boys are beautiful! and I love their names too.
I hope you'll stick around. You will find much advice and this is always a place to come to for a soft shoulder to land on when life gets to be too much. I have been there many times myself.

Mary

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