Thursday, May 15, 2014

May I say HELLO? 2014

Happy Mothers Day!!!  Chris and the boys spoiled me all day long… so thankful. 

Wynnie loves to look fancy.

Wynnie has been on/off room air since he contacted the flu in March.  When he thinks you're not looking, he bites off his hand socks and takes off his nasal canula. Sneaky Pete!   Here he is caught in the act! 

I tried getting a "caption this photo" contest going.  Both babies have such adorable expressions!! 

I had the AWESOME pleasure of meeting Mikey…. the man, the myth, the legend.  Mikey is 8 years old and his mom Trish has always been an inspiration.  I met them when in Florida earlier this month while on a business trip.  So blessed to meet other ML2 babies and their parents.

This was last week.  The babies were snuggling while Wynnie was taking a break and trying to breathe on his own.  

Wynnie thought it was funny that the lion was trying to get him.

Dori looks hot to trot in front of that fake waterfall. 
Last month I also had the amazing pleasure of meeting April.  Her angel Madison earned her angel wings right before turning 5.  April was in town visiting her sister so I had the chance to meet them all.  Although most of us ML2 parents share different zip codes, careers, races and life experiences -- the bond of having earth angels brings us all together as if we've known each other for years.  

These days Dori repeatedly asks to go outside with Papi.  I snuck a picture of their "happy hour" the other night while Chris was watching sports.  Dori must have been in the middle of a very exciting tale!  

May has been a beautiful month with lots of projects being completed around the house.  Ben and Alex are enjoying more time playing outside with their friends now that it's warm and sunny for longer at night.  I've quit being lazy and am going back on a regular basis to bootcamp.  Alex's choir competed in an outdoor choral competition against 30 schools and victoriously came away with TWO first place trophies (13 years running thank you very much).  Ben had a little accident at a friends trampoline so now he is sporting a Harry Potter-like scar on his forehead.  I told him it makes him look more interesting so he doesn't seem overly concerned about it.  

Wynnie has not been to school since March since he has been going on and off the ability to maintain healthy O2 levels on room air.  After much switching around meds, going back and forth to the doctor we are still seeing if this will be his new "normal" or if he'll eventually be able to no longer breathe with assistance.  Either way, he hasn't stopped enjoying his time with Dori and his day nurse Hilda.  He is turning into a little Diva with her and that's ok. 

A couple of weeks ago we expedited our visit to the cardiologist.  Our pediatrician and pulmonologist both thought that maybe the babies' breathing problems were heart related.  Both little guys had EKG's and cardiac sonograms done.  We were there for a total of 5.5 hours so as you can imagine the babies were tired and cranky after such a long day in downtown.  Dori was especially upset since he seems to think the cardiologist looks like Chris.  So for hours he kept screaming" PAPI!!!!!!" and holding his arms out to him so that he would carry him (with no love back).  As you can imagine, Dori was going nuts trying to figure out why "papi" wasn't holding him or making him laugh like the "real papi" does.  No matter how much I told Dori that Dr Lemler wasn't Papi, Dori wasn't hearing any of it.  It was funny but sad at the same time.  Dr "Papi" told us that Wynnie's heart is basically the same as last time, no major additional damage or problems thank goodness.  Conversely for Dori, he said that Dori's heart has "significantly worsened" since the last time he was checked last year.  Analogy:  Say that you get a new bucket to water your plants in the garden.  Unknowingly you buy a bucket with a small hole in it, so when you water your plants they are not getting all the water they need.  That was Dori last year with Aortic Insufficiency.  Based on his new results, Dori's hole in his "bucket" has significantly grown.  With a bigger hole of blood going out the wrong way, his body is getting less blood that it needs to function properly.  What does that mean?  Dori works harder to maintain his awesomeness.  He sweats and gets tired and gets cranky.  Imagine when you work out your heart gets faster and you sweat…. but eventually you relax and feel good again.  For Dori sometimes he feels like he's been working out a marathon race with no quick "relaxation" in sight.  How does that change things?  Not much.  We still do our best to care for him, we still have nursing help in the evenings to keep him comfortable and happy, and he still has the appetite of a 50 year old truck driver.  We are not changing much for him because he likes his life just the way it is.  There's absolutely nothing we can do to fix his heart so we just soldier on with love.  Are we being dramatic and asking for pity?  No.  We're not like that.  We do our best to keep drama at a minimum and to keep things as "normal" and positive as possible so life will continue as it always has.  Dori keeps us laughing with all his singing, all his loud talking and all his protectiveness of Wynnie.  As long as he's a happy camper so are we.  

Chris and I can't believe that at the end of the month it'll be 16 years that we married!  Next blog entry I might do a "16 things we wish we knew before we got married"  ha ha ha !!!!  Wish you all a great rest of the month!  Take good care!! 

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