This pictures is perhaps the best picture of Noah - ever. It captures his pure energy, zest for all things zany and his love of life and having fun.

He is our inspiration on the toughest days and he is Cecily's constant companion.
 
We love our Superhero...

Onwards and upwards!

The IDA SD Imperial Valley Chapter hosted its family picnic today at Balboa Park!  It was a day of smiles,  fun, entertainment, face painting and some unforseen tubie accidents!

Emily Dolton, of Inside Emily Dolton's Head , donated her time and talent to help out at the Cecily's Closet booth and painted amazing faces for children of all ages.  Noah, pictured here, started off as Batman but progressed to a full face Spiderman by the end of the day!

We were so happy to be part of the event and to tell more people about Cecily's Closet.  Every child that stopped by our booth received a book - thanks to some very generous donations from Zina, Russel and Alexa! (We are so grateful!)

We were just sorry that we had to leave early.  After just sharing a story about the importance of getting children out (even with their feeding tubes and equipment) I managed to pull out Cecily's tube while playing with her on the grass. One sudden move and I stood on the tube while attempting to stand and out it flew... there was tears (and other stuff) but luckily by the time I cleaned her up she was all smiles and we raced home for a proper tubie change.

Thank you to the Infant Development Association for providing early interventional services for children in San Diego.  We credit early intervention for Cecily's amazing progress!

Onwards and upwards!

What girl does not need a pair of pink cowboy (excuse me - cowgirl!) boots! Our little cowgirl/princess was all too eager to strap on the hat and boots and pose for the camera. When I saw these at Target  I just couldn't walk away...I did try. I just couldn't!  And she is technically riding a horse every week.  These are down-right needed! Giddy up!

And speaking of riding, Cecily had her lesson today. I can't say enough nice things about the women at PoVa in Poway. They are sooooh good with Cecily. They are just wonderful, good, big-hearted women that surround Cecily with everything she deserves: love, attention, direction, energy, compassion and care.  She still has some tears with the riding but she loves to pet her little BlueBelle, feed her carrots and watch the other ponies run around the ring.  Next week the sensory trail opens and I am sure Cecily will enjoy that very much! She loves to be outside. She is a nature girl with a passion for fashion.  And yes, she has a tendancy to like to look in the mirror and I blame Grammy.

I am so proud of Cecily for working so hard every day.  There is not a day that goes by that I don't feel encouraged by her drive, or motivated by her sheer desire to climb, talk or giggle.  She is one stubborn baby and I love it!

I need to hang on to that motivation when I get frustrated about other areas of Cecily's development that may not be progressing as quickly. And when I say frustrated - I don't mean frustrated with Cecily! I could not be more proud of her. I just mean a little worn down because it is not easy to try and feed a child repeatedly and have them show no interest in eating.  It is hard to always feel like you are pushing, pushing, pushing and perhaps I should not be.  I wish I had the answers. 

I always promised to write this blog with honesty and so yes - there are days when it is hard.  We have had a few sleepless nights this past week and Cecily has not been tolerating her bolus feeds through her g-tube as well as we would like.  We would love to reduce the amount of time she is feeding on her pump so she is free to explore the world without her cute little black bag (aka pump holder!).  When parents reach out and ask me about Cecily's feeding challenges I realize that I should likely talk about them more in this blog.  It is hard. It is tough.  But I just try and tell myself that if we had not pushed with the PT she would not be cruising! If we had not pushed with tummy time she many never have gained the muscles to push up and support her weight.  We will continue to fight and do our best to support Cecily.  It is not always easy but I just find that dwelling on the positive, or the silly things like pink boots, helps us get through the harder parts of the day!  The best advice I can give (not that anyone asked) is to always look for the bright spot in the day.  Every day will have its ups and downs and perhaps even spirals... I just find for our crazy family we can take it in stride if we choose to celebrate the little victories and to worry less about what Cecily is or is not doing. Afterall there is always tomorrow!  And perhaps tomorrow I will find the matching pink cowgirl hat Cecily clearly needs for sun protection...

Onwards and upwards! 

This room makeover came with some blood, sweat, tears and this list...which for the record is just the top 5 because there was a lot more...

#1.  Movers showing up 25 hours late...
#2 . Mattress delivered to wrong address
#3.  One team member's car breaking down
#4.  One team member skidding across 4 lanes of highway traffic with two tires blown out... (She is safe, secure but shaken)
#5.  Opening Day Race Traffic when our route required us to stop at our storage locker on Via De La Valle...

But we would do it all again - and on Race Day - to see the big smiles from Chloe and Emily.  We are just waiting for their family to approve Chloe's story so we may publish it on our site! Please come back and learn more about Chloe, her journey and Angelman Syndrome.  Plus, we'll have all the pictures of this super-cute room!

A BIG thank you to Zina, Russel and Alexa for the donation of this adorable doll-house bed.  AND for the help from Knock on Wood, the designer and builder of this amazing creation. Mark stepped in for my Dad and after assembling the bed, helped me to get the rest of the room in order!  We are so pleased with the end result and can't wait to show you the rest of this space.

Today was a reminder to me to ALWAYS stay positive.  Things happen.  Things break. Things get lost.  Things cost more than you think they will.  Things are things but PEOPLE are what count.  And today we met some pretty cool people and helped make a space for two, adorable little girls.  What could be better?

Onwards and upwards!

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Today was a very fun Monday! They are one of my most favorite days of the week because the laptop remains out of sight until the evening, Cecily has swim and horse riding lessons and the time in between is all Noah's!

Noah and I have been enjoying a lot of Mommy and me time lately. He needs it and the truth is I do too! It is so hard to balance everything and ensure everyone gets just what they need. I just keep telling myself that I'm doing everything the best that I can and at the end of the day it is all I can do. 

Today Noah did so many things that make him Noah... for starters... the house was full of giggles.  Cecily always starts her day in my bed with cuddles from Mommy.  These days everyone else (even my little rooster Noah) is still sleeping when I hear the not so silent sounds of Cecily in her crib.  If I don't leap quickly the little whines becomes an intolerable scream because she believes (and deserves) full attention... and she will not settle for anything else.  Noah calls her a cowgirl princess.  We call her a diva.   Anyhow... Noah heard Cecily because she was making a lot of noise so he came running in to get in on the giggles and the cuddles. He tackled Cecily, but with love!, and they erupted in more giggles.  It is so fun to see them together and to see them both laughing... it made the very early rise worth it.  Noah just sat on the bed and said, "look at how she loves me." "She really just loves me."

Tonight Noah told me that he thought Cecily worked very hard in the pool.  His adult word choices always make me smile. He commented on how she was really hanging on and pulling up and trying to get out of the water. The funny thing is he was dead right... but the way he summarized the day and her achievement was priceless.  He also loves that Cecily is now climbing. He encourages this which is actually getting dangerous.  Today he picked Cecily up (for the first time) and showed her how to get up onto the couch. Well voila! She is now doing it very quickly and I will never be able to let my eyes off her again.  The danger is she likes to crawl to the very edge and hang her head over the side.  She knows she will fall but because balance is skill in progress (for everyone in our house!) it makes me nervous.  So I grabbed her arms and she placed them on the floor, I quickly placed my hands on her hips, she did a split with her legs in the air, erupted into giggles and flipped over! Noah stands up, cheers and announces..."Cecily... wow....Cecily should get an award for that..."  He was being serious!  We repeated this performance at least ten times and Noah couldn't wait to show Daddy.  Cecily was quite proud, too.  It was just a very fun family moment and it has made my day.  (For clarification - Cecily was flipping because of how she tried to get down so I just made the flip safe and she loved the movement and being upside down!) Noah pretended to be an announcer and added his Noahisms to her performance... if only I could have done the flips and made a video...

And then there was dinner.  I was being my militant self, wooing Cecily to eat with little success.  Noah looks right at me and says Mommy - food is scary to Cecily.  I turned to him and said you are such a good big, brother and told Cecily how much Noah loves her.  She grinned and threw a carrot at me.  Noah thought that was grand.

There were so many times today when Noah stopped me dead in my tracks. He understands that Cecily has reflux.  He understands that she is quite happy with her milk.  He is always defending her and yet he also encourages her.   As I looked at the soft cheeses, humus, carrots, fruit, melon and various other tid bits I was tempting her with I decided that once again my sweetie was right.  And just when I was thinking what the heck am I doing... I hear Noah tell Cecily, "you need to get big and strong and you will have to start eating one day - ok baby."

How is my four-year old smarter than me already?  I am so in for it when he gets bigger.  Thank God he is still in the phase where Mommy and Daddy, especially Daddy, are smart!  For now, I will just treasure him and his sweet way with Cecily.  I have graciously omitted all of the typical 4-year old things Noah did today because I prefer to remember the very sweet things he did with Cecily!  We'll work on not whining, listening, and understanding that every day is not Christmas tomorrow...

Onwards and upwards!

Someone has a case of the giggles and it isn't Noah! Our little Cecily has discovered her laugh and it is cute and contagious. Her little face squeezes up, her nose crinkles, her eyes squint and the sound is just pure joy and silliness.  I wish I could attach a video to this entry with the sounds of Cecily. It is happiness captured. It is another huge accomplishment for this little trooper.  She is expressing herself in new ways every day and her giggle is just another way for her to communicate with us. We adore it!

Big brother Noah has one of the best laughs I have ever heard. It is deep and loud and happy and reminds me of all things good in the world.  Together, Cecily and Noah sound like heaven. I wasn't sure what it sounded like until today.  But I am pretty sure it sounds like this... The sounds of happiness, wonder, delight and fun all rolled together.

Life is good.

Onwards and upwards!

Today Cecily's Physical Therapist told us to work on cruising... of course this has to come from interal drive but we can promote it by placing objects on the couch and encouraging Cecily to go and get them.  Cecily has only really done this once or twice until today.  After I told Jen I would work on it... Cecily decided to really work on it herself...

If I didn't see it myself I may not believe it.  She climbed up onto our red couch in the playroom today and pulled to a stand through the peek-a-boo window.  She climbed down and cruised along the couch and then the train table. She could NOT be stopped.  She cruised along our bed and even did the leap between furniture... Go Cecily! She is such a little monkey  and as of tonight she is cruising around everything!

I am so proud of our little angel. She is so determined. She is such a hard-worker.  Her face is sweet and angelic but most of all determined. If you can see her face when she is trying to find her footing and press up to a stand you know she is committed and invested in her task at hand. She inspires me every day.  Anyone who sees her can see the drive! Brien and I have lumped Cecily's life into phases  in our head.  She is still timeless to us so months and dates have less importance. We don't let ourselves worry about where she is on the milestone chart.  We only focus on where she is going. 

Cecily is embarking on her third awakening.  For her first year of life Cecily was not present.  She could look at you but it was as if she was looking through you.  It was hard to always remember to parent, and coo, and smile, and sing when there was no response... but we kept pushing with the support from family, friends, therapists and her amazing medical team.  There were some very hard days but she started to awaken afer her feeding tubes got sorted out (multiple surgeries later...).  With each awakening we would see Cecily lunge forward.  Each one is like a rebirth and a new shade of Cecily's personality emerges.  She is quite a little monkey and we LOVE it!  It takes cognition and spirit and spunk to do what she is doing... She is giving love to not just Mommy but everyone.  She is doling out smiles and giggling when she sees funny stuff.  She is responding and engaging.  She is babbling and talking.  She is stringing two words together and she is shouting, shrieking and responding to questions with gestures that let us know if she wants something or not.  She has opinions and she is sharing them... She knows what she wants and she goes for it!

We are so excited! It is hard to express how much joy we feel right now.  We honestly didn't know if this day would come.  But we didn't allow ourselves to worry about it, either.  Now that this day is here we are celebrating as a family.  We are soaking up the smiles and laughter and loving the cuddles and snuggles. 

We will never give up our fight to enable Cecily on her journey.  We always tells the kiddos they CAN do it! We believe.  We are so grateful to the wonderful people who have worked so hard to get Cecily where she is today.  She is cruising... What will tomorrow bring? Pure joy.

Onwards and upwards!

There are days when I think about my life before the Internet.  How did I get anything done before? Do I spend too much time online? I used to hate Facebook and wonder why people put such personal information out into the universe. In fact, when some of my friends and family saw that I was using it... they wondered what had changed. (For the record I had to create a page as an exercise for work so I blame that...) But alas, I got hooked! And now I love all the people I'm meeting and all the information I'm able to find. Heck, Cecily's Closet wouldn't even exist without the support of social media.  It has changed our lives for the better.   And we love it when we stumble onto a new site that provides the information you need, want and LOVE!  Here is a new site that you have to check out if you are considering a feeding tube for your child, or a child or an adult you care for has a feeding tube!

Check out I Love a Tubie! on Facebook and the I Love a Tubie web site!  They started a feeding tube awareness and week and so much more!

Founded by a family of a child with a feeding tube, the mission of  I Love a Tubie is to share information about the day to day life caring for infants and young children with feeding tubes.  Moreover, Feeding Tube Awareness is a place for parents to connect to others who face similar conditions or live in the same geographic area. We also want to raise positive awareness so that this medical intervention is better understood.

We are fans and encourage you to check it out! We will be adding this to our list of lovely resources on our site.  We had hoped that Cecily's Closet would have a forum like this for families in San Diego but alas this forum already exists and we are just happy to promote it and join the conversation. I can't tell you how many times I have hunted for a site like this... to learn from others and to speak in a positive way about the opportunities of raising a child with a feeding tube.

I hope you check it out and if you can - join the conversation! It is by spreading information to each other that we can all brighten the lives of our precious children.

Onwards and upwards!