New Here... 11 month old developmental delays... need support

[NorwexEcoMom]

Hi!

So happy I found some mom's who are going through the same thing. My 11 month old has developmental delays. She just started rolling over at 10 months and still can't quite sit up by herself yet.

She was diagnosed with failure to thrive at 3 weeks old, just because they couldn't figure out why she couldn't suck on her own (she was 5 days overdue... 6lbs 2oz). It took until she was 6 weeks old, and she eats very good now, but we still have issues with liquids. She really dislikes the bottle (breasfeeding was a total nightmare).

Anyways... we've been through a lot of tests, but no diagnosis. She's receiving PT and we're seeing a feeding specialist. She's happy and chubby and healthy, just way behind where she should be for her motor skills.

They still want us to do genetic testing, but at this point we're 'tested' out. We have no family/friend support system in our community (we live in a very rural area) and I'm so drained at dragging her and my 2 year old to dr. appointments for another test... and waiting to hear the worst, then have the results come back negative. 

How far would you go to get a diagnosis? I guess I just keep hoping that she'll catch up because she looks so healthy and she's such a happy girl, but I don't want to have my head buried in the sand either.

Anyone in a similar situation? Any advice?

Thanks for reading...

Jen

[07gradmom]

My 19 month old was born at 37 weeks after a not so fun third pregnancy. She has delays in speech and occupational areas. She was in Physical therapy and completed that in July. It's hard at first to accept delays, I spent a lot of time crying about it. As long as she is happy and healthy that's all that matters. I wouldnt consider genetic testing unless it was more serious, in my case. This is a good group for support. :) As she progresses in her therapy, you will see her grow. I have seen a lot change for Lillian (my daughter) since she began her therapies.. good luck!

[boop172]

Hi, Jen.  I was in a similar boat.  My son was diagnosed with developmental delays at 6 months.  We were refered to early intervention and he started physical and occupational therapy.  He was also diagnosed with failure to thrive and had serious drinking issues especially.  He has a hard time gaining weight.  To make a long story short, we were referred to a neurologist who started running all sorts of tests on him.  He had an MRI, EEG, BAER, and a bunch of blood work.  Finally the neurologist suggested genetic testing.  They found the cause of his problem with that.  It turns out he has issues with one of his chromosomes and he was diagnosed with Prader-Willi Syndrome.    Based on my experience, I would get some genetic testing done.  It won't hurt to try to get some answers.  If it's not genetic, at least you ruled that out.  From what I have learned over the past 9 months, it's all a matter of ruling things out for our babies until they find an answer.  My son is now 15 months.  He still doesn't roll over or sit up, but I know why and he is still getting therapy.  I wish you the best of luck.

[llee815]

My DD was diagnosed with failure to thrive at 10 months. She had a smaller head size and wasn't gaining weight. She was in PT to help her sit up on her own. She was referred to a neurologist and had 2 MRIs done. Both didn't show anything. She also had a genetic test done. Nothing on that also. She's been in early intervention since 3.

Fast forward to now. She's currently 8 yo and in special needs classes. We just had another MRI done and 2 more genetic tests. All came back negative. She's in PT, OT and ST at school. We still don't know why she's behind. And that's what makes it harder, not knowing if we can be doing something more to help her. Other than being behind, she's healthy and extremely happy. I think that's what's most important. Best of luck to you!

Leslie

[NorwexEcoMom]

Thanks for all the sage advice, keep it coming! I find it strangely comforting and facinating to hear everyone's stories.

I guess it's nice to know that we're not alone in making hard decisions and I'm not the only one to cry for months over the lost dream of a "normal" baby. Or the helplessness you feel when you just don't know what to do to help them. Parenting is so tough! It's nice to see such strong women surviving and excelling at taking care of their babies.

I hope the best outcome for everyone.Thanks for the support!

Jen

[llee815]

I found this poem a couple weeks ago. I wish I would have found it sooner. I think it helps express the different feelings we have about not having a "normal" child. Hope you like it.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

[NorwexEcoMom]

Thanks for posting the poem. Talk about synchronicity.

I've been struggling with a couple friends with "normal" babies, listening to them talk about all the wonderful milestones their babies are reaching and have been feeling a bit bummed out.

Thanks for the reminder that our journey is just as special and fun and exciting, just different.

[llee815]

You're welcome! I'm glad it helps.