Lellow

What an amazing week it has been so far...and our little warrior may just be moving to the floor tomorrow!   Ryder had a good visit w/grandma and grandpa this weekend and I took Christmas pictures of he and Addy on Sunday - not going to lie, can't stop looking at them.  He is wearing a little Santa hat and looks like a chubby elf.  I could just eat him up. 

The other fun part of our week was Addy's very first parent-teacher conference for preschool.  She is such a big girl!  Of course Addy has been "a delight" in school - she is so funny I don't know how it would be possible to not be entertained by her.  She spends most of her day with "practical life" montessori activities - i.e. washing windows, polishing metals, sorting things.  No surprise there.  She is apparently very "busy".  Maybe that is why she can't sleep at night...still thinking of all she has to do.  She writes "lists" at home, an activity she of course picked up from me (and with help from the Frog and Toad story - if you haven't read it it's a good one - Toad starts his list after waking up with "wake up" just so he can cross it out).  The lists are great, since she obviously can't write, but she makes perfect little squiggles on each line of a notepad.  I can't even keep track of all the funny thinks she says.  The other day she was talking about Ross -she still is processing the fact that he works at Children's and Ryder lives here but one has nothing to do with the other.  She said I am going to see daddy in Ryder's room, but he won't be at work there because he doesn't do work.  Funny. 

It is so easy to look at our Ryder and see how far he has come; to see how much he has overcome, developed and grown.  If you don't believe in miracles, then you probably haven't see any of my photos.  Though no photo could compare to remembering how he looked after his first surgery or worse, how he looked when he had to be pulled of ECMO post-op day 3.  Frail, blue, cold, battered.  On full life support, surrounded by IV poles with so many pumps we lost count.  So sad I couldn't even take his picture yet.  Compare that to now.  He is so perfect.

What I sometimes lose sight of is how much Addy has grown since Ryder has been here.  Almost 9 months for a 2 (now three) year-old is an eternity.  In the last 8 1/2 months she became a big sister.  She moved daycare rooms and then stayed at home with our nanny (who we were hoping would be at home with Ryder), and she is now in preschool.  She started dance class.  She LISTENS in dance class.  She has a new BFF neighbor who she actually will shrare toys with.  She has learned all her letters, can [sort of] write her name and is doing great with numbers.  She stopped wearing pullups for naps.  She is awesome.  We are so lucky to have her - can you believe a toddler who has been carted back and forth to a hosptial a million times, missed time with mommy and/or daddy, is forced to try and figure out why other kids have baby brothers or sisters at home and hers is still at the hospital and she never complains.  She only cries about it when she can't come visit him.  She is such a good big sister.  She is getting soooo big.  Sometimes, I forget that.  And then the other day she said yellow.  Not lellow.  I asked her again what color her sun was - "yellow".  Seriously?!? My baby girl can make a "Y" sound?  What are we going to do.  Wait until she says Ryder instead of Wyder.  I will be a mess. 

Addy, big sis tattoo!



Addy, taking being a big sis seriously!!



Giving thanks...

Since November is a good month for giving thanks, a good place to start is to be so thankful for how great our little warrier is doing!!  Late on Sunday (after I managed to stretch Ryder's monitor wires/IV pole etc. over to the couch so we could see a little daylight) Ryder was told he might get to go to the FLOOR on Wednesday.  Yep, out of the ICU.  Of course he must have heard this so he spent a good 36 hours after that throwing up, screaming, low oxygen, etc. which effectively pushed that transfer back with fear something horrible was wrong.  As it turns out, so far nothing bad, he just needed a little slower increase on his feeds and some ativan.  Ativan, in case you didn't know is good stuff.  Ryder now has the stitches out of his Gtube so it seems to not bother him much, he is back off the oxygen again and doing great and so we just have some work to do with getting his diuretics IV to oral, and his feeds up to goal calories...

Dr. Ryder, ready for rounds!!



Purple fairy princess Addy and her friend Taryn, practicing being graceful fairies!

Ryder had a great 1st Halloween.  He was a giraffe in the morning, but he apparently was not fond of that costume since he pooped all over it.  Next he was Dr. Ryder with custom scrubs and his own real stethescope, courtesy of the PICU.  He even went on trick-or-treating rounds.  Addy was a very excited purple fairy princess and has decided her favorite candy is "all the candy that I got". 

And so I am holding my breath, very hopeful for a little more progress, and then...H.O.M.E.  Yes...I think this really may happen...we might bring a baby home with us.  I don't even know what to think...so what do you think?  Will we get our Butterball home in time for Thanksgiving?  That is my hope!

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.