Tuesday, January 17, 2012

winner and a word

This will be very quick...Jackson and I are finally over that nasty stomach flu, and we are going to celebrate Lily's birthday party tonight...we're still dragging a bit, and praying nobody else comes down with it!

The winner of the print from Baby Byrds on Etsy is...

Mandy said...
Happy Birthday, Lily! We love you and it's a privilege to watch you grow. Thank you, Patti for sharing your sweet little blessing with us. Love you, friend!


Congratulations, Mandy!  Send me your address and tell me which print you would like, and I'll pass your info on to the seller:)

In other fun news...Miss Lily said her first official word today! She has been babbling since she was an infant, and sometimes says something that sounds like muh-muh-muh for more or ada for all done...but nothing very clearly associated with a word. Lots of bababa and dadada and mamama but she does not really repeat words back to us. She knows there is supposed to be a sound that comes out in connection with a word- typically I put my hand to my mouth and say a word and then put it on her mouth and say, "Now your turn, Lily!" She'll attempt a sound, but it does not really resemble the actual word. For instance if I said, "Say baby, Lily" she will say dadadada and then sign "baby".

So I've been trying to get her to say "Nye Nye" for when she wants to nurse...she knows the sign for nurse, and if I'm not looking at her she will frantically start beating her chest and yelling AAAHHH until I look at her. She's found this to be very effective in the middle of the night as well;)

This morning when she was ready for her nap she crawled up into my lap, laid down in the nursing position and signed nurse (which we made up for her- she just pats her chest like I mentioned above)...so I said "What do you want, Lily?" She put her hand to her mouth, just like I usually do and said very clearly, "NYE NYE NYE NYE!!!"


I am so proud of my big TWO YEAR OLD !!!

I have to say I have been more than a little...concerned...I won't say worried...about Lily's speech. I had a little meltdown at her therapy last week (Karen if you're reading, thank you for enduring my tears and for your loving encouragement ;)) and I've had more than one meltdown on Babycenter.com this month, asking moms for input. I just want to know I'm doing everything I can to help Lily, and that I'm not missing anything.

And right now I just want to make this post a little bit longer than I intended it to be...because I just received a beautiful video from a little girl who has inspired me so much. And if my spelling is terrible in the next few sentences, it's because it's hard to see the keys to type when you have tears spilling all over them.




You know what I love? I love my Down syndrome community. My fellow blogging moms, my tight-knit family on Babycenter, the awesome resources like Down Syndrome Pregnancy.org and IDSC for Life that are available online - you are my lifeline. You are Lily's cheering squad, and my personal support system, and I am so so so blessed to have a network of friends who have encouraged me through some tough times, and given me inspiration for her future. 

That beautiful little girl in the video above should be on national tv, if you want my humble opinion:) Violette and her mama have been such an encouragement to me and to so many others for many years...they've laid the groundwork for all the positive stories you're seeing on the news lately- a dedicated group of parents who have long held the belief that our children should be celebrated for the gifts they are. Shortly after Lily was born I started searching online for a something positive to help me through- what I found was a LIFELINE of support in the resources I mentioned. These blogs and forums and websites gave me such hope for Lily's future, and they continue to do so today.

Thank you, Violette, for one of the sweetest birthday presents Lily has received:)

And now if you'll excuse me...we have some celebrating to do!


23 comments:

Jonana said...

Good for you, Lily!

cathy said...

She will do things in her time

xoxo
cathy

Eisley Jacobs said...

Happy Birthday Lily!!! You are the cutest thing!

melissa said...

happy birthday, lily!! xoxo

Mrs. K said...

Oh that Violette brought tears to my eyes. Brought back some sweet memories of the little ones that I taught. Patience Patti, Lily and God have their own time frame.

Mandy said...

Yay for Lily's first word and Yay for me because I'm the winner :) I'm emailing you, now. Thanks, Patti and Lily!

Jenny said...

Every time I see pictures of Lily in that adorable pink dress my heart melts, what a beauty she is.
And YAAAY for a new word! That's so wonderful!

Anna Theurer said...

Happy Birthday to Lily! Awesome on her first word!!!!! Patti, I know how had and worrisome it is to wait to hear for your child to talk. I am still waiting for Ellie to say more than mama. So tonight, celebrate the life of your beautiful girl and her first word!

lovemy3 said...

Yay for speaking!!! I look forward to hearing mama brag about more words to come! I hope she enjoyed celebrating her birthday!

Ilisa Ailts said...

So sweet! Happy Birthday Lily! Wow, 2!?

So, as far as the speech. I am sorry I am not helpful. I am back and work and do not get past my blog most of the time I am able to sit at the computer. Cal has zero words and he'll be 18 months on Monday. He did sign, but has quit since getting so sick this past fall. We are finally past the illnesses (I am doing some assuming here) and I am really praying we start hearing at least one word. Well, like everything else, in due time. I know how hard it is, especially when we feel so responsible. But no matter what, loving them is what is most important and I think we far exceed those expectations!

Jenny Dawn said...

Happy Birthday!!!! Oh my gosh-- look at that dress in the last picture-- she is too precious!!!!! We are working so hard on speech also-- the milestones mean so, so much-- celebrate, Mama!!!

cara said...

That is just wonderful!!!! It must have blessed you beyond words to hear her say that. I have this feeling she is going to be talking up a storm. That video of Violette is priceless. What a doll. I was watching this adorable, little four year old boy with down syndrome on YouTube telling his parents what they were spelling. It was SO cute.

I am SO,SO sorry you got sick too. I will still pray it leaves your house and nobody else gets it. I hope the party is beautiful. Lily is TWO!! Exciting!!

nicole said...

What a sweet sign you made for her and she looks absolutely adorable doing it. I would feel exactly as you do about wanting some kind of confirmation from Lily that you are on the right track and that she is indeed understanding and receiving the right therapy. She just gave you a sneak peek into all the big things to come this year! One thing is for sure, she is getting the message loud and clear that she is loved by her Mama.

Lori said...

That is the cutest video EVER!!!! So glad Lily is finally going to get her party!!! Lily is amazing and she is going to continue to be amazing....truly I believe that and I cannot wait to smother that little girl with hugs and kisses!!!(hopefully seeing Lily face to face will convince Elli that Lily is not her because she is convinced she is looking at herself on your blog :))

Lena said...

Happy Birthday to Lily!
Poor Jackson. Go Away, flu bug.

I wonder if you and your readers are aware of First Annual Conference on Poor Prenatal Diagnoses and Therapeutic Interventions. I read about it at http://gerardnadal.com. People can attend on-line for free.

Patti said...

I'll have to check that out, thank you Lena:)

angie said...

I completely understand how you feel waiting on the edge of your seat for those first words. My son is developmentally delayed, so even the littlest accomplishments are HUGE for me as his mama. I'm sure that many words will follow as Lily sees how excited everybody is about her new advanced communication skills. :) Loved the video from Violette- how precious is she???!! Have a wonderful birthday celebration!!

barronfamilyus said...

This actually made me tear up a bit :) Way to go Lily!!

AndreaB said...

Happy Birthday Lily! Two is a pretty special age =]

Patti, I have something I wanted to share with you, and maybe you can share it with your readers. Kelle Hampton is a mother of an almost two year old little girl with down syndrome, so I know you can relate to her =] She has organized something called the "2 for 2" initiative and is trying to raise $200,000 for the National Down Syndrome Society before her daughter Nella's 2nd birthday this week. The are only $40,000 away! She put together an AMAZING video highlighting how amazing children with Down Syndrome are (which they are!!). Watching this video reminded me of the videos you have made about how special children with Down Syndrome are.

You can watch the video and read more about what Kelle is doing here: www.kellehampton.com and if you feel so compelled, maybe you can share this with your readers and encourage them to spread the word as well. You have an amazing blog readership, and I know they can do amazing things for these kids!

(I am a nanny for a little girl who has Downs, and I can't imagine my world without her!)

Thanks Patti, and Happy Birthday Lily!!!

-Andrea Busath

Catherine said...

Happy Birthday, Lily!! Hope you have a wonderful celebration and that everyone stays healthy. You are a beautiful little girl and you are blessed with a wonderful, supportive family. Enjoy being 2!

Anonymous said...

Patti,

Your pictures of Lily are lovely. She just sparkles.

I just noticed on RR that Brent has now been transferred. PLEASE keep showing his face and Spencer's face and ask any blogger friends to also show their faces. They need a family soon!

Sue H.

Danielle said...

I love
You Lils!!!!!!! Happy happy birthday! You light up
So many lives

Gilda said...

Happy Birthday to a beautiful Little Lily in her pretty pink dress!...hope you enjoyed your day!