Happy Birthday Princess Ellie!

Ellie turned 9 today. 9. I can't believe it.

She had a GREAT day too. She had a joint birthday party at school with her astrological twin Xavier who was born to the minute at the same time. How amazing is that, that these two babies both born out West ended up at the same - one-in-a-million pre-schools?

Ellie's favorite gift was a headset I gave her so she can listen to her iPad or iPod touch or her Voice output device with them. She liked them so much she wore them for the entirety of her birthday dinner even when we were not using any of the devices mentioned. When she was trying out the new headset with her toys she LOVED it!! Many, many giggles.

She also got this great little purple robot that talks back. It's called Willa by Fijit. It's hilarious and I was VERY impressed by the fact that Ellie accepted this new presence into her world readily. Those of you who have been with me for awhile have read stories from the YEARS when any new thing, especially toys, were considered baddies, not to be trusted or tolerated even in the same room. My little girl has come a looooooonnnnnggg way since those sensory integration filled days.

Ellie was smiling all day. She ended the day by snuggling up on me but into Daddy's shoulder - her preferred fall asleep mechanism. I am glad she had a such a great day and thankful to her teachers at her school who threw her such a great party and made her feel very special.

For me the day was a bit melancholy. I am haunted by the day she was born so many years ago. Though I had a very busy work day that included meetings and even a presentation, in even the smallest spare moments I could see certain scenes from that day in my minds eye. The pain and Dave making me go to the ER. Seeing her for the first time in the isolet hooked up to 20 tubes. Dave calling his Dad and pacing outside my recovery room door- freaking out.... And most of all the intense gratitude that she is still here with me, giving me this opportunity to be her mom. That she has done so well and is such a loving, smart, and sweet little kid. I feel grateful but sad too. It's been hard. And lately with building her an accessible room, working full time, and trying to finish my dissertation - we are at maximum capacity.

However, I think my visions of the past are the ghosts of all women of the day they became a mother. Ghost of emotions that run from total joy to complete horror in our case considering how wrong it all went. In the wake of it all, it's never far from my awareness and my gratitude that Ellie is a miracle and a wonder in that she can do all she does and that she is here to do it.

Eight is GREAT!

I can't believe she is eight! I can't believe all her NICU buddies are eight! I can't believe it's been eight years since her birth. That just seems so incredible. Several friends and family have said the same mantra, " I can't believe she is eight." That short sentence does harken to the fact that is was never a given that she would ever be eight. Against all odds we are so blessed!

Last year Ellie, around this time, actually late August until late December was in and out of the hospital constantly with we didn't know what except that it was neuro and involved her being in lots of pain and me being very scared, tired, etc. Turned out it was abdominal migraines and I think side effects of coming of Depakote.

This year, knock on wood, things are going much, MUCH better. Thank you to all the powers that be and mostly to Ellie herself for being a consummate warier princess!

Last year, because of all that, I didn't do the montage. This year I will but not yet. First I have to make a chocolate cheesecake for her pirate party tomorrow (She eats pureed food so I thought she might be able to handle cheese cake). There's an idea, make her a cake she can actually eat... only took me 8 years....ah well. ;-)

We are having her party back at home this year. Last year was great at the ballet studio but since then that class was cancelled and the locaton was so far flung most people could not come. This year we are staying home, which is probably one of Ellie's favorite places to be anyway. Dave created a family pirate treasure hunt, complete with clues and lots of Ahoy theres! and ARRRRGGGGGHHHHS! etc. I get to make food for kids and adults which is perfect. My parent friends deserve good nosh as much as their adorable babies who are not babies anymore but 8 or close too! Yikes!!!

Pictures soon to come of many things as we have made progress on the body jacket positioning front and new style AFO's and of course Splity.

Picture description: Ellie wearing her cousin Halle's sparkly hat sitting with Mama in a southern "Mic O'Donnell's" so coined by her cousin Henry waiting out a squall while on vacation this last August.

Yesterday a child came out to wonder...

Ellie turned 6 yesterday.

I can't believe that much time has gone by since that rainy, scary Saturday when she was born in 2002. She has come so far and I have learned so much about love. My heart always get choked up on her birthday because images of her birth and that day are still so very vivid in my mind. Like flashbacks they were popping up throughout the day as I watched my daughter, my beautiful Ellie as she is today I couldn't help but see the tiny blue body lifted out of me 3 months too soon. Dave pacing outside the door of my recovery room tears streaming, and frantic as I massaged my legs trying to get the feeling to come back into them quicker so I could go see her as he raved outside the door into the abyss as our lives changed forever. Not feeling the pain of the emergency C-section and the adrenalin to get to my baby.

And that first moment seeing her in the incubator with 3 wires coming out of her belly button, breathing tube down, IV's in each leg, raw fragile skin, baby white hair on her perfect round head. The on the spot breakdown, feeling that I had failed her horribly. Pain. She was in pain. I could feel it. My poor baby thrown into the world too soon, too fast without air. I don't think I will ever really get over that. I think that's just the way it is. It servers as a dark contrast to all the good that has gone after. A reminder to appreciate everything and anything that is good in the moment and know that everything she accomplishes is against the odds and a blessing.

We choose to celebrate her birthday each year with gusto. Celebrate her life and the fact that she is still here with us. We like to have a party for all her friends, teachers, therapists, nurses and care givers, family, and other parents from whom we have learned so much, to say thank you. Without all of these wonderful people we would be lost.

Ellie, who started with so many challenges has achieved so much and there is no stopping her. She reads, she dances, she sings, she signs, she laughs and tickles, and does subtraction and addition, and loves and loves some more. I am so lucky to have her in my life as she brings me so much joy. This birthday I was really struck by how many people love Ellie and us and who are in our lives supporting us and taking us along. We have our village and it's a great one. We are truly blessed and grateful.

Too all of you who called and could not be there yesterday, we missed you and love you and had the vanilla cake with the vanilla icing, and it wasn't the same without you. ;-) Scroll down and see the montage for more pictures of the day.

Special thank you to Carla, the lovely lady by the key board in the picture above, who volunteers every day at Ellie's school to conduct music classes for the children. Thank you for coming to Ellie's birthday party and playing all her favorite songs. Ellie LOVES music more than anything in the world and your being there to play the songs that she knows and loves made a huge difference. Seeing all her classmates and their siblings dancing and rocking out together was pure joy and could not have happened without you. Thank you doesn't even cover it!

Thank you too to Bonnie whose help in the morning and during the party allowed us to keep our sanity and get all ready and for doing Ellie's hair. The french braids were perfect with the flower crown. Ellie looked lovely. Thanks for all your help and love you give Ellie on a regular basis (and for "hiding guy" and new and improved Bear Hunt both of which she won't put down!)  

Thank you as well to Liz and Marla for all the balloons and signing and "water bottle smiley" and keeping more than one child from near immanent self destruction with all our open shelving as well as all the love you give Ellie regularly. I still can't believe you found a new "raggedy" which is a feat beyond OTT and Ellie has not put her down since. Between Raggedy, "hiding guy" and new and improved Bear Hunt (the last two thanks to Bonnie) we had trouble getting Ellie to stop playing and go to sleep last night! 

Thanks to everyone who attended and for all the gifts for Ellie. It was great to share with you this happy day.  

Happy 6th Birthday Ellie-luv!!!!

Photo and video editing at www.OneTrueMedia.com

Birthday Songs, Christmas presents and Uncle Eamonn

Ellie has been having a great month despite her continuously casted feet. She is sleeping better and I actually know why and am working on a nutritional post to discuss. But for now here are some pics of her latest adventures in 3BT Style:

1. Ellie's fourth fifth birthday party - the kid party at home. She had a blast. Two of her classmates and her neighborhood friends came. There was singing in circle which is her favorite, a caterpillar cake and lots of laughs. (*For all of you bakers out there - don't forget the crumb layer. You know what I mean. Why I think I can frost a cake as well as I can bake and sculpt them is beyond me. Because truly, I suck at frosting cakes! Look, his purple antenna fell off. Oh well.)

2. Ellie opens presents. That is one small sentence that represents oh so much. First - her sensory aversiveness to touching unfamiliar things is so much better that she actually enjoyed opening presents!! She was actually ripping off the wrappings with gusto. Once she got to the present she wasn't so interested but hey, gotta start somewhere. Christmas is here and this is one of its blessings not lost on me.

3. Uncle Eamonn rearranged his schedule to swing by Boston in order to see is first niece. It was a great visit as Uncle Eamonn always makes Ellie laugh. He looks a little rough in this picture from the long journey from Madrid.

Happy Birthday Ellie, Love Mama

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Happy 5th Birthday Ellie-Luv

Ellie turned 5 today. She was born at 3:01 PM PST. It was a rainy Saturday and she was three months early.

She had a great day today. She has come so amazingly FAR.

It truly doesn't feel like 5 years have gone by. It is going way too fast.

It's late. After a day of parties at her school and at home and a couple more to plan for, mama is tired.

Will add pics to this post and more descriptions tomorrow.

Post Birthday Blues

Ellie and Nanny having a laugh. Ellie had a great time on her birthday this year which rendered the party a great success. I did things a little differently this year to really focus on Ellie. Each year for her birthday we have held a big party to thank all the people that have helped us along the way, which made for a big party where mama was busy running around as host. This year after a bit of agonizing and brainstorming, I decided that I would make an event that would include all the things Ellie loves most. I thought about what makes a good day for her, and decided to have a hyperlexic party where Ellie could go from person to person and do what she loves best - read. Though the school people think this is a "splinter skill" and relatively unimportant - we think it's great and our path to helping Ellie express herself. I also decided to spend as much time with her as possible instead of trying to be a Martha Stewart like wonder host.

I was lucky to have a small team of brilliant helpers that included Dada, (Grandma) Nanny Bernie and Grandpa Paddy. We still put on a big spread, but this year I did not invite our whole street and just kept it to family and Ellie's nurses. Ellie gets really overwhelmed by too much noise and too many people.

Here Ellie is styling in her new red velvet Starlet track suite compliments of Auntie Sue, and she loves her new scarf made especially for her by Maureen!
Nanny Bernie and Grandpa Paddy labled everything in the house with white lables and words written in big black letters. We made name tags for everyone on rainbow stickers (Ellie's current favorite song is the rainbow song from Signing Time) so that no matter who Ellie was hanging out with she would have a new word to learn - remember when I mentioned previously how she loves to read our logo shirts? Same idea. We also placed loads of her favorite books everyhwere so people could read to her. During the party Dave and I spent tons of time with her and she got to cuddle with her auntie Lauren and Uncle Brian and her Grandma Irene as well has her beloved Tiffany and Bonnie. For the cake Dave came up with the idea of making it in the shape of a 4. I then implemented this idea and added candles that spelled out Happy Birthday. We showed her the cake and lit each candle as we spelled the words with her. Instead of the birthday song, which Ellie doesn't like, I asked her what song she wanted to sing and she picked, "Ellie you are beautiful" a song I adapted from one a friend taught us. So we sang that and then we helped her blow out her candles.

Nanny singing softly to Ellie before we leave for the airport.
She went to sleep happy and contented if not a bit exhausted. I am not sure what everyone else thought of the party and it's help yourself eats, but I think Ellie enjoyed herself. Because I was spending time with her there are hardly any pictures, but here are a few from the last few days from November 9 to yesterday.

Nanny Bernie and Grandpa Paddy went back to Ireland yesterday. A fact Ellie is keenly aware of. She is still a little weepy today and has had to check out their room a few times to see if they have really gone. The rain is reflecting our mood. Thanks to everyone who helped us make the hyperlexic party fun for Ellie and for all the wonderful birthday pressies. xoxox

Happy 4th Birthday Ellie!

Ellie was born on a rainy Saturday, just like today, November 9 in Los Angeles at 3:01pm. She weighed 2.9 pounds and was 14 inches long - which is considered big for a 27 weeker.




Here are some pictures to give you some idea of how far along she has come from those first scary days four years ago.

Pictures left to right from the top: Day 2 of life: holding hands with Mama through the isolet; 2 months and 4 days old breathing on her own; first time being held by Mama at two weeks old; First time being held by Dada at one month old; Ellie in her Step-N-Play at 18 months; Ellie and her Auntie Sue at 2; Ellie and Mama Easter 2005, Big four year old girl, Ellie, and Mama November 9 reading while waiting for casts.