Lazy Sunday afternoon...

One step closer!

Our warrior did great! Ryder left for the OR @730 and was back just after 9 with a brand new mic-key button...this will get that tube out of his nose and allow us to give his meds easily and supplement what he will hopefully soon be able to try from a bottle. He was extubated easily and just taken off oxygen altogether to give it a go. What a big boy! He is my superhero...thank you all for the prayers- we are so full of hope tonight!!

Mic-key

It's been a busy week...we are tired...except Addy, who hates to sleep. Ryder is doing wonderful. Just amazing. So it is with great excitement, anxiety, sadness, etc. etc. that we are sending him back to the OR again Fri am for a Mickey button (feeding tube). There is a ridiculous amount of emotion tied up in that little piece of plastic...but it's the next step, sometimes you just have to take it! Just along for the ride...

We can do hard things

Life is not supposed to be easy.  We all know this, we just get caught up in the details and have trouble remembering sometimes.  Our little warrior has also had to learn this important lesson early.
Ryder is working on his feeds this week.  He is not swallowing yet (vocal cords are moving but not coming together enough for taking bottles yet).  It also seems that digesting has been a little tough this week with lots of spitting up.  He doesn't seem to mind too much - usually back to smiles fairly quickly.  He is still on a fair amount of oxygen but is now on sildenafil (yes, it is MORE than just viagra) to help with this and still getting regular breathing treatments (IPPV).  He also is having trouble sleeping without being medicated.  He likes to have a little ativan at bedtime which will buy him a few hours.  Though I am pretty sure this is in no way related to his heart condition, given that his big sister also hates sleep. 

Ryder, 3 am party

So what else is new?  Addy is still loving school...we had to go to parent night yesterday and Ms. Connell demonstrated a math lesson.  Wow. Montessori school is tough.  In July Addy was tossing baby dolls around her "class" and now she has to polish silver and do math.  She still says she plays all day though, so guess she is not perceiving this as "work".  She is doing great in dance class and makes a wonderful big sister, loving visits with her brother!!  Ross is of course still loving his job here and will be doing some serious prospective resident interviewing soon.  I survived Infectious Diseases boards today...hopefully with a passing score...

Watching Mosters, Inc.

So, overall it's been a really good week.  It doesn't have to be easy to be good, and we can all stand to work on being thankful even if things don't exactly go our way.  We can do hard things too, and a lot of the times these "hard" things give and teach us the most.  That being said, it never hurts to have a little reminder...or maybe a big wooden reminder nailed up on the kitchen wall...

Thanks to Aunt Judy for the Halloween care package! 

Thanks to our "First" family for the yummy dinners!

And of course, Happy Birthday #60 Dad!  Wish we could come to you to celebrate with you :)

News at 11...

There's a Channel 5 Van outside the hospital tonight...I'm not sure why, but I'd like to believe it's coverage of THIS news:  Ryder, at age 7 months, 4 days took his breath outside today - see for yourself!!

Bored.  Waiting for security to open the garden door...



Yeah!  That sad story about it being my first trip outside worked!!  Or maybe it was because I am just that handsome??



Whoa.

Seriously awesome second walk.  And next time, we are not turning back...

What a great little Tuesday.  Can you believe how much time we spend getting caught up in our own plans when it may just be that the best things of the day, week, month, or year were never part of those plans?  Hoping for another great day for this little warrior tomorrow, and trusting that good things can come to those who wait with patience...or also those who stash a getaway car out front.