Friday, January 30, 2015

Dorian's Checkups

Dorian has had a busy week so far.  On Wednesday he visited his pulmonologist Dr. Gelfand.  Dori was excited to see all the nurses and resident doctor shadowing Dr G.  Since they were all ladies he was flirting with all of them (blowing kisses and telling them he loves them).  After checking out his O2 sats and listening to his lungs, Dr G said there's really no changes that need to made on Dori's meds or breathing treatments.  Good news!

Today Dori had his regular cardiology checkup appointment.  Dori did great with his echo since the tech was a tall man so he kept singing him songs and would replace the chorus with "PAPI PAPI PAPI!!!".  The tech would let Dori listen to the loud heart beating on the monitor and Dori would stop singing and start bopping his head to the rhythm of his own beating heart.  It was so cute!  Dr Lemner stated that Dorian's enlarged heart and his severe aortic insufficiency have NOT worsened since his last visit.  He bumped up his enalipril just a little to help with slightly elevated blood pressure but other than that, he is happy to see that Dorian remains steady and seemingly happy and calm. So again, no new news is ALWAYS good news on our front.

Although it's awkward, it's comforting when we see our doctors and they offer their condolences about Wynnie.  Dori was talking about Wynnie to Dr Gelfand very excitedly on Wednesday.  I wish I could understand everything he meant!  Alex made Chris and I a sweet drawing of our family and Wynnie was set aside to the far right with a halo over his head and wings on his back.  We miss you so much stinker!  We love watching videos of you and looking through pictures.... crazy how quickly it seems it has passed but weird when today I said "he passed away last month" since it's still so recent.

Yesterday's Dorian's school did their boosterthon Fun Run (fundraiser) and I was so happy to see Dori all dressed up and jamming out to the DJ music that was playing on the playground while all the kids were running their laps.  Dori still felt just as part of all the celebrations since he wore his "laps" t-shirt and he did a victory lap with his teacher (in his stroller).  I'm sure Dori didn't care he couldn't run like all the other kids -- he was focusing his energy on the DJ.  It made me so thankful he has teachers who include him in all the fun school-wide activities and that we at least have 2 other perfectly healthy boys who can do all the running their healthy hearts' desire.

This week on Tuesday the kids took a field trip to the Middles School and the parents had orientation in the evening.  We're excited for them!!!!  I think they are both nervous about moving on to the "big time" school but we're so excited for them.  Actually I'm scared to death because I remember how terrified I was to start 6th grade with all the "smokers and drinkers" I had been warned about ha ha ha!!!

More than ever, I thank God for the health of our children and look forward to what the future has in store for them and our family.
Dorian's happy face at the cardiologist today 

Dori showing his school pride after the Fun Run

Ding and Dong eating breakfast yesterday morning (pushing into each others heads and telling jokes that make absolutely no sense to me). 

My Facebook App popped up this picture automatically reminding me that I posted his picture of Wynnie last year on 1/29/14.  When I saw it 1) I was surprised 2) I cried 3)  then I felt happy to see his precious face.  I felt like it was a hug from Wynnie saying "Hi Mami!  Hi Papi!  I'm doing great and having a blast up here!  Don't worry about me."  

Thursday, January 15, 2015


It's amazing how quickly the past month has passed.  On January 2nd I woke up with two thoughts in my head.

 My first thought was "Wow I wonder how old my dad would have turned yesterday on his birthday?" (after doing quick math I realized he would have been 83 years old!!!  Since he went to the gym 5 times a week I'm sure he'd still be as strong and charming as always.)

My second thought was "Today is Wynnie's one month anniversary in Heaven."  We all miss him so so so much.  We grieve him the same way I grieved my parents when they passed away.  When it's just the 5 of us we'll bring up funny stories about him, we'll look through pictures and watch old videos and we privately remember how much love he brought to all of us.  Dori still calls out his name on a daily basis but now when he does, he'll pause for a bit and then smile and say "HEAVEN!!!"

The boys are handling it very well in their own ways.  Ever since Andi (Chris's sister) passed away Ben openly talks about Andi helping him with stuff or doing stuff for him from heaven.  So now that Wynnie's in heaven as one of his guardian angels, he attributes things to Wynnie too.  Monday night while we were at a Mexican restaurant, Ben shifted his arm on the table and almost spilled his tall newly refilled glass of water.  He was able to scoop it up in time without letting any of the water splash all over the table.  I said "Woe!  Good save!" and without hesitating he immediately shouted "Yeah!  Wynnie saved that for me!" with a big smile on his face.  It was so cute.

Alex has had a few friends at school ask him about Wynnie and he was crying in the car telling me that he feels uncomfortable answering questions about Wynnie.  One of his friends innocently asked Alex about the funeral and the coffin and those questions really hit him hard.  I told him that kids don't ask those questions to be mean, they ask because they're curious.  I made him realize that between now (5th grade) and high school graduation, He and Ben will probably be the only kids in their class that will lose a sibling.  Lots of people will lose a grandparent or older relative, maybe sadly even lose a parent, but probably nobody will lose a sibling that their friends had grown to know from coming to our home or seeing us around the neighborhood.  I told Alex that when someone asks you questions that make you sad, you have the power to redirect the conversation to something more positive.  So he practiced saying "I don't want to talk about sad stuff about Wynnie, but I have lots of funny stories about him.  You wanna hear some of them?" or "That kinda bums me out, can we talk about fun stuff about Wynnie instead?"  

It feels good when Ben and Alex open up about stuff, we're thankful they are in touch with their feelings and are free to express them with us.  Today I finally read through all the sympathy cards that friends, family, and teachers sent us throughout this past month and a half.  I had been putting it off because I knew it would be sad but today just felt right.  Thank you all of your kindness in thinking of us as we continue to wrap our brains around our "new" normal without Wynnie.  Your words, poems, and scriptures were thankfully received into our hearts. We continue to receive thank you cards from Hope's Door, Catholic Charities and other philanthropic organizations that received donations and toys from YOU in honor of Wynnie.  We received many toys and gift cards after the toy drives deadlines so I ran a couple of bags full of gift cards and toys to the Childrens Hospital in Plano (the last hospital where Wynnie stayed).  The receptionist eyes lit up knowing that all those toys would make many children happy upstairs in the play rooms on each floor.  Thank you all so very much for helping us make such a tremendous impact!!  This new year has shown us the love and generosity that one little person can inspire.  Thank you Wynnie for being such an inspiration.