Friday, July 26, 2013

Dori's breathing difficulty

Dori's week started off this weekend with a stinky ear infection and a slight cough.  As the days have progressed he has gone from having a fever on and off, the ear infection is managed and nearly gone, to now these past couple of days he hasn't been able to maintain his oxygen levels on his own.

Through it all he has been chatty, happy and soulful.  When his pulse oximeter begins to sound off (little machine that alarms off when his oxygen level dips below normal)  -- instead of being annoyed or distracted with it, he just starts bobbing his head like it's music.  The first time he did it I thought it was a just a coincidence, but once he did it the 2nd time and smiled at me -- I couldn't help but laugh right along with him.

Since he is coughing quite a bit, we have intentionally kept him away from Wynnie.  Wynnie hasn't minded having quality time to himself with his toys on the floor while I hold Dori, but Dori on the other hand is very mindful of straining his neck asking for Wynnie until I'm able to adjust his body so that he can see him from where he's sitting with me.  Once he catches a glimpse of Wynnie he grins and all is well with the world again.  His love of family and of life gives us so many reasons to smile!

These past two days he's been on the nasal cannula breathing in oxygen to maintain his levels in the 90s. Without the cannula, he drops down to the 70s and 80s.  I cranked him all the way up to 4 liters of oxygen yesterday but was eventually able to titrate him down to 1 liter.  But once he woke up from his nap and was active again, he had to be cranked back up to 3 liters.  At this point the breathing treatments, steroids and antibiotic he has been prescribed aren't really helping him in the breathing department.

So as I write this drinking coffee -- my overnight bag is packed, Dori's diaper bag is loaded with supplies in the car, and another hospital trip is in our plans for the day.  We will be taking him to Plano Children's (not going all the way to downtown Childrens).  Please keep Dori in your prayers -- we need his little lungs to open up and allow him to breathe without the assistance of oxygen.
This is Dori at the pediatrician's office on Monday.  He had Dr Wardell laughing so hard that when we followed her out of the room, there was a cluster of nurses and office staff lined up watching us leave the room.  I guess we were a little loud.  It all started with telling her about his "closed eye driving" in his scooter (that he only does when his physical therapist is watching him -- he likes to make his PT nervous).  Then once Dori started his faux country club laugh, she really lost it.  I wish I would have recorded it... he was a riot. 

This is what Dori has looked like all week -- Mr Snuggle bug!  His hands are covered in socks to prevent him from yanking out the nasal cannula. Smiling as always...  

Thursday, July 18, 2013

Dori loves Wynnie 4ever!

This just might be the cutest expression of brotherly love I've ever captured on film to date!!!!  Our sweet angels on earth are so stinking ADORABLE!!!!!  (Not that I'm biased, it's just a fact)

Wednesday, July 17, 2013

Mid Summer Day's Dream

I can't believe the summer is already half over!  Our days have been very busy with Ben and Alex attending tutoring for reading and writing, Dorian and Wynn attend school 4 times per week for 2 1/2 hours per day, Viktoria is gone all day at school, and Luna keeps chasing birds in the backyard like a good hunting dog should.

Since the 4th grade will be focused on alot of narrative writing, I've been spending at least 1 hour per day reading or preparing presentations with Ben and Alex.  On reading days, they either read for fun out loud to me, OR they read a facts-based book about growing up and take notes about what facts they learned.  On video days we watch documentaries and take notes during the documentary and every night when Chris comes home from work the boys deliver a presentation about what they learned that day.  We are learning about cells, the constitution, the real story behind Brave Hart (William Wallace), adrenaline, hormones, etc.  The boys have been taking alot of pride in their presentations and it's been fun seeing them squirm about the biological/ development stuff we've been learning.  I should video record when they get to the reproduction chapter!!!

Wynnie's voice never really did come back from losing it after having been intubated so long in the hospital.  I thought his voice would have been back by now.  Sometimes he sounds like a little cat, but he is still as cute and cuddly as ever.  Dori is always asking to play with Wynnie and saying hi to him so when Dori gets too fussy I just ask him "Do you want to play with Wynnie?" and he smiles real big and lets me put him on the floor so that he can roll over to Wynnie.  Dori enjoys driving around with his eyes closed in his motorized scooter while his PT is here.  He'll close his eyes, smile and drive very slowly while cracking his eyes to see what his PT is going to say.  Stinker.  Dori can't seem to get enough food... he eats fairly constantly throughout the day and doesn't gain an ounce.  What luck.   He also enjoys hanging out in the pool with Viktoria and her friends... as long as he can splash around he can stay out there for hours.  He is smart to hang out with the pretty girls instead his old mama inside. ha ha!!

I've had a number of people ask me if I'm still working for some reason.  Yes I'm still working.  Summer has been a little slow for me this year but I'm looking forward to a busy fall -- some opportunities with old clients and others with brand new clients so it should be fun.  Chris is busy with work and spent some quality time golfing with the boys last night until it started raining on hole #3.  His renewed quest to be healthy is very inspiring to me -- he has lost over 30 pounds by eating smart and when I'm tempted to stick my face into a pint of ice cream, he helps steer me in a more healthy direction now that he is watching what he eats too.  Ben's baseball season is over for the time being and basketball is on break.  Both Ben and Alex are attending agilities training and doing alot of the same drills I do at bootcamp.  It's fun to see.  Ben is still very focused on his "abs" and Alex compliments him on the definition he has earned on his tummy and his chest.  Alex has taken a big interest in history this summer and has been watching lots of shows about historical stuff.

The beginning of summer was really hard.  There was a couple of weeks where the extended i-cell family had their babies earn their angel wings.  Although the weeks have passed, our prayers are with their families and it makes us squeeze our babies just a little bit tighter.

God has been good to us this summer.  In the comfort of our home surrounded by the people we love the most, we continue to be thankful for our children and all the fun crazy adventures they bring to our lives.  I can't imagine my mornings without a quiet sleepy Ben who takes a good hour to wind up and then goes nonstop for an entire day.  I can't imagine an Alex who doesn't follow me around all day and tells me he misses me even though he is only gone for an hour at a time for tutoring or sports practice.  "ALEX I HAVEN'T BEEN AWAY FROM YOU LONG ENOUGH TO MISS ME" doesn't seem to work on him.  I can't imagine an afternoon without Dori -- a high maintenance diva show tune master who loves to flirt and sings his "I love my mami.... oh yes I do..." song every chance he wants to see me smile.  I can't imagine a night without Wynnie who likes to cuddle on Chris's chest once all the other boys have gone to bed and just smiles for days while Chris's voice rumbles in his ears.  Life is nuts but I would think it to be very boring if it weren't.  Thank you God for never making our life boring -- not one single day.

You don’t choose your family. They are God’s gift to you, as you are to them. ~Desmond Tutu
Golf Outing Yesterday

Dori loves laughing and singing to us all

Wynnie is just too cute for words

Ranger game day in the cheap seats = total blast 

It's all fun and games until Dori gets angry