Wednesday, October 15, 2008

"Turn your face to the sun and the shadows fall behind you" Maori Proverb

Get It Down; 31 for 21 Today was not exactly mellow like I was looking for but it was a tad bit more relaxed then the last few have been. I ended up cancelling Zoey's PT this morning. I wanted to give her another day of rest. So rest she did. I managed to decorate for Halloween. I love Halloween. One of my favorite holidays. Only thing missing is my East Coast upbringing of pumpkin patches with cider mills. Fresh pressed cider, homemade donuts, candied apples, the works. I have looked long and hard for a replacement to fill the void but nothing has quite filled the bill. I did find my childhood stomp in Endicott has a web page. I got all excited thinking they shipped but ...they haven't yet brought themselves up to the year 2008. Remember, I am a small town girl at heart. One day I might stumble upon a mill that measures up. At least a girl can dream. I am a little late getting decorations out. Otherwise occupied is my excuse. Honestly, also, I am having a little blog burn out. Struggling as I sit down each night. So I apologize for the lack luster post. Not one of my best tonight, sorry. Many of you may have noticed the link I have on my side bar to the book "Gifts." It's an amazing book and a must have for any family who has welcomed a child with Down syndrome into their lives. I was given this book fairly late into our journey with Zoey. Not at the beginning but actually what turned out to be the absolute perfect time. A time when I needed to connect with other's, hear their stories and be reminded of that incredible bond that we share as mother's to children who have Down syndrome. Our stories may vary on certain levels but in the end they are joined by an indisputable common thread. What I had no idea about,not until today, was that there is a whole site about the book "Gift's,"about the upcoming "Gift's" volume two, about it's authors, links to important outreach sites and so much more. The other thing it has, which I was wowed at was, a complete blogroll of children and families traveling this common road. How great is that? You just click on and there they are, updates by the minute to their sites. The instant opportunity to find others when you might need it most. What a blessing to new mothers, fathers and families just starting out on this path, maybe feeling alone and scared and right at their finger tips, the chance to connect. That is a beautiful thing. So now, how is the little princess? Well, maybe I saw a glimmer of my happy and healthy Zoey today or at least a twinkle...She seemed to perk up a bit at the end of the evening. Full of smiles. Doing "so big."Snuggling up to us. My hope is that she is on the up swing. My only concern is a VERY distended belly. It is not hard but rather soft,which is a good thing but wowza, she looks like she has swallowed a watermelon. Her little Mickey Button which usually sits nicely under rib cage, was instead raised WAY high over her rib cage. This happened once before, about a year ago. Necessitated a trip to the ER. Diagnosis: Ileus of unknown origin. Just to give you another visual. You can literally see the loops of her intestines through her belly. She is not uncomfortable and I just hope by morning things have well, deflated. Or else... you know where we will be heading. The last item is the picture of Zoey. Did you notice her legs? Those are Baby Legs. I saw them on a little one months ago. I filed it away as a must have but forgot about them. That is until I went and checked in on my boyfriend. There he was, looking so darn cute wearing some hip Baby Legs. So online I went and ordered some up. Beside being cute they are practical for Zoey. Having a g-tube, we have found that onesies are her outfit of choice. We double her up with a plain white onesie and then another "shirt type" one on top. Easy access to her tube and most important keeps her away from the g-tube that she tries to grab. Onesies also protect her button from getting snagged and caught on things. Baby Legs will keep her legs warm, especially when she rolls from the carpet to the tile, which she loves to do. So as I put these on her today I had a flashback to the movie "Flashdance" and found myself singing the song "Maniac." If you're as old as I am, you know what I'm talking about. What can I say. Well, this old lady is heading to bed. Life is catching up to me. And who knows what tomorrow might have in store for me.


Reagan Leigh said... really stocked up on those baby legs!!! I'm glad you posted about them because I was about to order some online for miss Zoey! I didn't realize they came in so many cute designs and colors. I'll have to go check them out! She looks too precious in that first picture! Totally posing! Love it!

Sophie's Story by Elaine said...

Those Baby Legs are too cute. It's great to hear that Zoey is coming around. She continues to be in my thoughts and prayers.

By the way, did you see the post on Jackson's blog about going to the cider mills in Detroit?

Kele said...

Wow, Z looks so tall in that picture...must be the baby legs. Think I'm gonna have to get Pres some of them!

kristyc said...

Happy to hear that Zoey is perking up!! I LOVE the babylegs. Addison has a collection of them and you are right they just make it so much more comfortable for their bellies. Zoey is so beautiful Heather..she just melts my heart!!

Cheri said...

I am glad you found all the "goodies" over at the Gifts website...I have been addicted ever since I ran across it last summer. I think it is a great resource for families on so many levels but especially for a new family who has just learned of their child's diagnosis but not ready yet to make contact with others... It is an anonymous way to see "normal" and lovely families walking the same road. It has been so encouraging to me!

I love Zoey's "baby legs"! :) ...and yes, totally remember Flashdance! :)

Caitlin said...

She looks just like Jake in that picture