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Riley's Story...

Posted by on Apr. 1, 2010 at 11:52 AM
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Hi, I just joined the group in hopes of finding some support and friendship.  My name is Samantha, (Sam) I'm a SAHM with my 14 month old son Riley.  Riley was born at 35 weeks after a hard pregnancy and 5 weeks in the hospital on bedrest, he was completely healthy at 6lbs even and came home with us with no stay in NICU.  Yesterday Riley had has 2nd developmental evaluation at Childrens Hospital.  He was diagnosed with Developmental Delays in fine motor, mild gross motor, and receptive and expressive speech delays, as well as Hypotonia.  We are starting the process of genetic testing, but other than that we don't know any causes yet.  Riley also wears glasses (or we try to get him to wear his glasses as much as possible I should say, lol), he's had them for about 2 months, he's very farsighted and has astigmatism.  Since he's gotten his glasses he's been a whole new kid, he started crawling at 12 months, then finally has been sitting on his own for the past month : ) He also now within the past two weeks is pulling up on everything and can get down and he occastionally does a little cruising on the couch or tv stand.  Other than that he's  an EXTREMELY picky eater and doesn't eat much in general, he's a skinny super tall thing, but is healthy as can be.  He's sweet and loving.  He love's to play and crawl and climb all over me.  He's just my beautiful baby boy, here he is:

Yesterday the therapists' and doctors his age equivalent is 9-10months for his motor skills and 6-7 months for speech.  I'm kind of devestated to hear that.  Even though he's come so far these past two months he's still so far behind, I just feel like it's my fault, that I haven't done something right or enough for him to cause this, but I know thats not true I just can't stop feeling it.

Anyway on a brighter note we're on a waiting list to start occupational, physical, and speech therapies, which hopefully will be short (fingers crossed), and it is a beautiful day here in central Ohio, sunny and high of 76* so me and RJ are off to play outside :)

Thanks for having such a wonderful group!!!

by on Apr. 1, 2010 at 11:52 AM
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Replies (1-5):
peasntatersmom
by Leslie on Apr. 1, 2010 at 1:11 PM

 Hello, Sam***WELCOME!!!*** to the group!  We are very happy that you have found and joined us here!  :)

RJ is Super Cute, Loving these pics!! 

Developmental Delays is a journey.  A journey into questions, feelings, successes and disappointments.  We are here to take this journey together as moms of developmentally delayed children.  I hope you will stop by here often to ask questions, give and receive advice, share stories and pictures and just vent whenever you feel the need.  :)  

I look forward to getting to know you and to learning more about RJ as you post! 

*HUGS* from us

07gradmom
by on Apr. 3, 2010 at 10:39 AM

hi! your son is adorable. My daughter has physical, occupational and speech delays. she is finished with physical therapy, but still has therapies in the other two areas. Lillian's main delay is speech. She was born at 37 weeks after a hard pregnancy (my third) and I was devastated to learn of her delays. She has been in therapies for a year and has made so much progress, but still has a lot to do. Some days will be great and some will not. I feel a lot better knowing I have this group for support, it helps sometimes to talk to others that totally get what you are thinking. It's not your fault that your son has these delays. Hopefully those therapies start for your son soon, and that they help him as much as possible. My daughter loves her speech and occupational therapists. Good luck!

viola3083
by on Apr. 3, 2010 at 3:20 PM

Hi, my little guy is 21 months old and has hypotonia also.  He was diagnosed by the neurologist about a month ago.  They do not know the cause of it but feel confident that he will keep improving.  He has been getting PT through Early Intervention since about 16months old.  He wasn't sitting without support until 9months old.  He started the combat crawl at about 16 or 17months and the regular crawl shortly after.  He can now take some steps on his own but still has some work to do.  He has a walker that he got from EI it is metal and has three sides, he pulls it behind him...its similar to the ones that elderly people use.  He can climb hills and run with it. He loves it, and it allows him to run around with other kids until he can on his own.  I think I am going to start OT, and speech too.  Best of luck...he is adorable.  Feel free to write me if you have any questions or just want to talk with someone going through the same thing:)

Ellen

RJsMom116
by on Apr. 6, 2010 at 6:53 PM

Thanks sooo much for the welcome ladies!!!

Mom2LiamNMolly
by on Apr. 6, 2010 at 7:18 PM

WELCOME!!!! And your son is darling!!!! Those eyes are going to be lady killers, no doubt! He is precious beyond all get out!

My Molly was diagnosed with hypotonia (along with a plethora of other problems stemming from a pre-natal stroke) when she was 7 weeks or so... She had a lot of delays in her first year +.... she didn't crawl until almost 11 months, walk until 18 months, and was language delayed..... (not to mention 3 heart defects, a paralyzed vocal cord, laryngomalacia, and other stuff)

She is now 22 months (tomorrow!!!) and is walking, no RUNNING, has 4 and 5 word sentences, and is doing wonderfully. Early Intervention was a God-send for us HOWEVER I really feel it was more what DH and I did with her that helped her... we had a speech therapist at 12.5 months and Molly HATED her... freaked out everytime she saw the lady and she was only approved ST under age 3 in our County... so I canceled her, got books and flash-cards (the cheap ones, like 3.99 at the drug store) and we just worked with her over and over and over... We got things like Mr. Potato Head to teach her her facial features, cheap plastic cups for stacking, a baby medical walker for walking techniques, and so on.... we even built her a mini staircase (since we are in a single story home) that has three steps up and down (we put carpet on it) so she could get strength crawling up and down it....

She was NEVER supposed to walk or talk.... today she said to me... "Momma you get down now"!!!!!... she can count to 4, too!

We ran the gamut of genetics test because they thought she had "the look"... everything was negative.... and we did the highest level of tests they do... a full macro-array, I think they call it.... and we went to a top genetics hospital in another State (University of Utah)

Molly is very tiny as well... She is 17.5 pounds at 22 months and only 26 or so inches tall... she is also picky.... but I found a great doctor who believes in letting her eat what she wants, when she wants... and she has put on some weight... She is still in 9-12 month clothes at almost 2

You just have to be vigilant and be strong... and work as hard as you can as much as you can....

                   
                            
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