Tuesday, October 12, 2010

Wordless Wednesday

...sort of.

In honor of 31 for 21, and Down Syndrome Awareness Month, I wanted to ask all you Mamas of babies and children with ds to share your best advice with me in the comment section.

What are the things that helped your kids the most- practically speaking? Is there anything ou would do differently, looking back? What advice can you give me about things in the future...things you wish you knew ahead of time?

And even if you have a baby Lily's age or younger, I'd love to hear from you!




Thanks ahead of time!


Ashley said...

I have no advice, but I do know that Lily is beautiful! xoxo

Stephanie said...

First I love your header picture! and Miss L's pics for this post are precious.

I don't have any advice for you or moms who already have their little ones in their arms, but if there is a mom reading who is still carrying their little love, don't worry! Don't waste you pregnancy worrying. That's what I did. Emmie was the last baby for me to carry, my age and body are against me. I so longed to enjoy and remember every second of it, but I lost that all. when I found out about the Ds, I crumbled and the last five months of my pregnancy were lost. I look back now and remember only sadness. and it was all so unnecessary. Just be happy, it's going to be OK!!

Unknown said...

Some fun therapy advice that our Lily loved.

We sat her in a box of rice! We got one of those storage boxes that have the two sided top and loaded it about a third of the way with rice. We hid her toys in it. We sat her in the rice put one side of the lid down and let her go! She would find the toys put them on top of the closed lid. The rice helped her balance to sit and was good for her sensory needs. My boys would play with her (okay they wanted a box of rice for their own but I couldn't find a box big enough!)

Be aware of rice falling out of her clothes ;-)

Patti said...

Suzie- LOVE THIS!! How old was she when you did this?

Stephanie and Ashley- thank you ox

Tara said...

Patti, I think you are already doing all of this, but my advice would be: While you need to be aware of what to look for/rule out regarding health issues and DS, don't forget that you are her momma and you know her best. Go with your gut. There have been times when I knew my doctor was freaking out over nothing, and times when he was being too laid back. I was right.

I am a therapist (OT) and it took me forever to d/c OT, even though I knew he didn't need it. I was just so used to the "experts" knowing more than I did about Ds, that I forgot I am the expert on Eon.

Most of all, enjoy her. Even though we are blessed to keep them as babies a little longer, it still goes by soooo fast! :)

Mrs. K said...

How funny....Lily Rice in a box of rice. Did anyone else see the humor? Or just silly Grammi.

What is it you wrote about a while back...oh yes, Expect not accept or do I have that backwards...accept not expect. Actually it works both ways if you think about it closer. Expect much of Lily and Accept Lily for who she is and what joy and love she is bringing to our family.

Each one of Lily's pictures tears at my heart strings whether she is smiling her crinkly eye full tongue smile or pursing her lips in a mishievious grin or tears flowing with frustration because she wants to sleep and big brother wants to play with her when he comes home from work. The ones that really get to me are when she is reaching out touching faces and smiling as is she is telling each one of you I am here to love and be loved.

Ashley said...

Hey Patti! Just wanted to let you know that I finally wrote Laura's birth story. I don't know if you saw it or not :) I know you've been waiting for it! haha

Tracy said...


My best advice is the still the same after all these months...please accepts Jack's hand in offer of marriage to beautiful Lily! I have to agree with you that she is simply the most darling baby girl! I never tire of seeing her pictures and reading about her day!

Melissa said...

I was just telling hubby about the rice box last week. We were at the pumpkin patch and they had a corn box there. Great for sensory play, and when she get older, great for finding toys and fine motor practice.

The once piece of advice I have for anybody is not to get too wrapped up in therapy. The forced break for Claire's OHS was great for me. I was getting to be a bit obsessive about cramming a whole bunch of appts in each week and stressing if we didn't get practice in every single day. Now, we practice but we make it fun. And if therapy is skipped it's not the end of the world. This shift in my thinking has been so good for me!

Oh, I don't know if Lily is teething yet, but I just found a teether than Claire LOVES if you are interested.