Happy Easter!

We've been busy getting ready for the holiday weekend. 

Visited the Easter Bunny...

Did a little decorating...

Did a little Easter basket grass growing...

Did a little cookie decorating...



Gettin' ready to dye Easter Eggs on Saturday & on Sunday we'll go to  Church, an Easter Egg Hunt & a Party with family and friends!  Hope you all have a great Easter.

{Heart}

February is Heart Month and Feb 7-14 is Congenital Heart Defect (CHD) awareness month.  A great month to celebrate this little guy...

...who 5 years ago was fighting for his life.

Milo's first diagnosis, before he was even born, was a heart defect.  An aortic coarctation, a very narrow spot in his aorta that prevented blood flow from his heart to areas below his arms.  Little did anyone know, that was just the tip of the iceberg.  At 7 days old Milo underwent a 6 hour surgery to repair the aortic coarctation and his incredibly narrow trachea caused by a Left Pulmonary Artery Sling.  As the days wore on new diagnosis and concerns were being added to an every growing list of critical problems.  Many of his issues were not directly related to his heart but Milo also has very narrow portions of his pulmonary arteries which was causing added pressure in his heart.

Milo's surgery was a success and although the next 16 months were spent in the hospital the scars are now fading.  He came home with a trach and was ventilator dependant but by 2 1/2 those issues were behind him.  He still has a feeding tube but is eating a little bit my mouth now.  He is still followed by a host of specialitst, has had several cardiac catheritizations and now sports a metal stint in his right pulmonary artery.

Above all I am so proud of my little warrior!

It was hard to capture Milo's scar but if you look
closely you can see his trach scar then his heart
scar and abdomen scar that run from his neck to
his bellybutton.

I'm posting this in conjunction with a project on Pintrest (yup, I'm hooked) to raise awareness for Congenital Heart Defects.  Click here to go to the Faces of CHD board on Pintrest to read the stories of many, many people affected by CHD.  It really is inspiring to read all of their stories!

Happy 2012

Milo and his cousins wish everyone a very

happy & healthy New Year!



Brett (10), Milo (5), Dylan (7) & Owen (5)



   Milo's Top 10 moments from 2011

No unplanned hospital admissions this year!  Milo had a heart cath and pulmonary artery stint placed and stayed one night in the hospital & that's it for all of 2011.

Milo is eating more food.  He still won't eat fruit & veggies at all so he gets those through his g-tube once a day.

No more diapers or pull-ups for Milo.  He's a big guy who can independently use the potty now.

For the first time Milo went swimming this summer and LOVES it.  He has a floaty vest and can float and maneuver all over.

This is the frist year Milo went Trick-or-Treating house to house and went with his cousins in Alamosa.

Santa wasn't so scary this year!  Milo was totally into Christmas for the first year.  Opening presents was so fun.

Milo rode 3 trains this year, Thomas the Tank Engine, Halloween train in Alamosa and the Santa Express in Canon City.

Milo turned 5 years old!  His friends from school as well as other friends and family helped him celebrate.

On Milo's actual birthday I took him to The Lion King musical.  Even though it was loud and long he enjoyed it.

Milo's favorite thing from 2011 was playing with all his friends and family.  We made it to Alamosa several times and he LOVES to jump on Grandma & Grandpas trampoline with his cousins :0)

Time Flies...and A Little Flashback

Merry Christmas & Happy New Year to everyone! 



Milo sat on Santa's lap without crying this year!


I can hardly believe how fast the end of this year has gone by!  Milo turned 5 about 3 weeks ago and I haven't found time to post the pictures from his party but I will try to get to it after the new year.  We are heading out to visit family for the holidays and it looks like the weather might be a challenge causing us to leave a bit earlier than planned.  Milo and I have tickets to ride the Christmas Train with Santa in Canon City and a snow storm approaches, such is life in Colorado :0)

I thought I would leave you with a quick little video of Milo exactly 5 years ago.  He was only 3 weeks old, still had a feeding tube in his nose, a breathing tube in his mouth and hooked up to the ventilator.  He was also under the influence of several strong drugs, in fact he was only allowed to "wake up" earlier in the week (he had been sedated and not allowed to move since birth).  Milo has come such a long way in the last 5 years and is definitely proof of the Miracles that God performs!  

Autumn

In celebration of the first day of autumn we went on a walk at a nearby "nature area" and I snapped some pictures of Milo.  The scenery doesn't look too fall-like and the temperatures have been warm but comfortable.  I really do enjoy this time of year.  Enjoy our adventure!

I love how this one turned out,

the colors are fantastic & the ripples in the water add a special touch. 

He tossed rocks into that stream for a long time :0)

And my personal favorite image 

from this morning~~

he's growing up way too fast...he turns 5 in only two short months!

Not Your Ordinary School Supplies

These are Milo's School Supplies for this year:

Not what most kids load their backpacks up with on the first day of school!  Into his backpack went an allergy safe snack in case the class snack is not safe for him, benedryl, g-tube extension, and extra g-tube in case his get pulled out or falls out, and an epi-pen for severe allergic reactions.  Not pictured was the standard pre-school extra set of clothes and a water bottle (which I forgot the first day of school).  At least we could leave the Pull-ups and wipes out of the backpack this year!   Ahh, the joys of a special needs kiddo :0)

Tuesday was Milo's first day of preschool this year.  He has the same teacher as last year (yeah!) but most of his therapists will be new to him this year (bummer).  Milo was so excited about going to school yesterday, he asked every 10 minutes if it was time yet.  He is in the afternoon session so let's just say it was a long morning but finally it was time to pull on that brand new first day of school shirt and put on those brand new, won't be white for long, light-up Toy Story shoes then grab the backpack and head out the door.



Come on MOM!  It's time to GO!!




OK, I'll stop long enough for you to get a picture, but can we GO now?

 We got to school and he started to fall apart a bit.  In the parking lot a little girl from his class year greeted him and he cried.  He wasn't sure about all these new kids on the playground and it was so hot you couldn't touch the play equipment.  His teacher opened the door and he didn't want to go in, he knows the routine but was stubborn.  The classroom was filled with noisy kids and camera happy parents, not an environment where Milo flourishes best.  When it was time for me to leave he bawled.  I know he stops as soon as I leave so I left him screaming in the arms of his physical therapist.  At pick-up his teacher told me he had a WONDERFUL day although she had to carry him to the door (not unusual, he'd stay longer if he could).  I think the best part of yesterday was when he was telling me about his day at the dinner table :0)  Last year he didn't really have the verbal skills or attention span to carry on a conversation like that.  He played in block area & had to share the toys.  They went to the gym for recess because it was too hot outside (a fact confirmed by the principal in an e-mail) and he played tag with his teacher.

His second day at school was a success, no tears and a great report at the end of the day.  The classroom was pretty chaiotic at drop-off today too but he held it together.  One little girl was crying so hard she threw-up in front of the cubbies (another one of those reminders I'm thankful that Milo can't puke).  The teacher was tending to her and the aide was trying to get ahold of the nurse and gather cleaning supplies.  Another little boy was having a melt-down about his mom leaving too.  I was proud of Milo for not crying without someone to guide him, he did seem a bit "lost" but he did great.  He even walked to the door by himself when I picked him up, ahh he is growing up :0)  On the way home tonight he told me that "house area" was closed today (where the kiddo left her mark) and so was computer.  They played in the gym again :0)

I hope this continues...

What Time Is It?

Waiting "patiently"

IT'S SIGNING TIME!! Live in the park! Today Milo & I went to a fabulous park in Highlands Ranch to watch Rachel Coleman from Signing Time perform. Luckily the performance was between 2 thunder/rain storms, quite a feat considering our crazy monsoon season this year :0) We got there early and had to wait sitting on the lawn.  I was doubtful that this method of waiting would work but Milo did very well, I only had to chase him once!






Doing the "Hopkin's Hop"


I think the best thing about this gathering was the diversity of families that attended. There were deaf/hard of hearing kids (I saw more cochlear implants than I could count), trach kids, kids in wheel chairs, kids on oxygen, kids with Cerebral Palsy, autistic kids, Downs Syndrome kids, and oh yeah typical kids too. No one stared, no one made faces or rolled eyes when kids ran around crazy or screamed, no one blinked when Milo lifted his shirt and showed off his g-tube (in fact a kiddo sitting on the blanket next to us had one), everyone seemed to understand. We met a mom and her daughter who sat next to us, the little girl had a trach & the mom quickly spotted Milo's stoma scar so we talked "trach" for a few minutes.  When Signing Time was created I doubt Rachel and her family had any clue about how many families she would help.  Even though she has two special needs kids (one deaf and one with spina bifida & cerebral palsy) I suspect that the success of Signing Time within the special needs community was beyond her expectations.  You see, Milo learned his signs from watching the Signing Time series over and over and over.  He would never "practice" with the videos but when he suddenly started signing, it was an explosion of language for him.



Up Close...


This show was so family friendly. They asked the kids to come up right in front of the stage to sign, sing & dance. I wasn't so sure Milo would get that close but he did. We started out at the back of the group and ended up right at the stage so he could be close to Hopkins the frog.

That frog is "humongous"




Rachel, host of Signing Time, and Hopkins, the mascot


Rachel sang and signed many of the popular Signing Time songs, she had kids come on stage to help her out and Hopkins even signed the songs.  Quite a feat for a person in a frog costume.  Rachel also taught us a few signs that didn't make the cut for the videos such as "tantrum" and believe me that one will come in handy :0)  She also told us that they just filmed a new Signing Time about potty training and they are coming out a very cute app for it providing positive reinforcement.



Dance (and sign) Party!


For one song (Turtle Rock, which happens to be a favorite of Milo's) she asked the kids to get up and dance.  Well quite a few took that as an invitation to come up on stage with her so she invited all the kids up and had a great dance party while singing and signing.  Milo took the opportunity to get up close to Hopkins but he wasn't so sure about all the other kids running around.  I picked him up and Hopkins patted him on the back, that made for one pretty happy 4 year old once he escaped the crowd.



Checking out Hopkins...



Rachel is a bit "over the top" in her acting on the videos but it captures the kids attention wonderfully. She even made fun of herself during the show!

Rachel and Hopkins braving the heat.  The hat & flip flops
are not a normal part of her wardrobe for shows.



Milo did very well and sat for the whole show with the exception of one break to get cold water, it was crazy hot sitting in the sun.  I can't image how Hopkins lasted as long as he did in that costume!  He did take a break at the end and Milo was concerned he wouldn't be back.  But no fear, Hopkins was back at the end for the Meet & Greet session.  We waited in line to take pictures with Rachel and Hopkins and finished up just as the rain started sprinkling again.  Milo certainly wasn't going to say hi to the frog on his own so I got in the picture too (as I said it was hot so I looked a bit weary).  Rachel was super nice and autographed a t-shirt I bought for Milo.



Sharing a little "I love you" in sign :0)