Wednesday, January 22, 2014

Healthy and Happy Late January!

New Years started off pretty scary, but it's amazing the difference that 3 weeks can make.  During that time the babies were released from their 24 hour stay in the ICU, I contracted gastroenteritis and had to go to the emergency room, Chris came down with a bug, Ben came down with a bug, and Alex made the school's honor choir (the Snapping Dragons!!).

Dori's new trick to keep his "ladies in check" is to call his nurses by OTHER nurses' names.  Then once he says their correct name he starts laughing and snuggles up to them while they cheer.  All they need to do is step out of line for 1 second (i.e. - Dori thinks they aren't making enough eye contact, they give him the wrong flavor of food, they aren't singing loud enough, aren't showing him his favorite videos, etc) and he begins this little game with them. He tried it with me today and I didn't play along (he was calling me Papi).  It's pretty darn funny how he knows how to make people laugh, he certainly loves to get a reaction from people.  He especially loves to watch and laugh at anything Ben does.  Ben is a super star to him.

Speaking of super stars, Alex has really made us proud in earning a spot in the choir.  He practices once a week after school and he LOVES it.  It's fun to see him excited about something that is all his own.  They performed at the high school in front of nearly 500 people.

Chris and I are debating when it's time to have the birds and the bees talk with Ben and Alex.  I think they are old enough now, but Chris says we need to wait.  Being that I learned about it in the 4th grade in the lunch line and from reading excerpts from (we'll call her "Jennifer") my friend's mom's romance novels in the 4th grade -- I rather they learn from us before anyone else dishes out the details. When did you guys tell your kids?  My parents never actually had the talk with me -- they just threatened that if I became pregnant I would be disowned and would need to raise the child and finish college on my own.  

Wynnie has learned how to have fun with his day nurse Hilda.  She knows all his little grunts and crackling noises he makes with his mouth and knows when he needs to be fed or when he just wants to snuggle.  He's a pro… he learned all the ins and outs from Dori.  Dori was laying on his tummy and lifted his head high to look at his nurse who was fixing his meds.  When he lifted his head he smiled and we all cheered because he looked so strong.  Ben got really upset and said "I feel sorry for Wynnie. Dori is just being a show off for girls!"  Ben always feels "bad" that Wynnie isn't able to do all the physical stuff Dori is able to do.  With perfect timing at that moment Wynnie smiled looking at Dori lifting his head, so we told him we should never "feel sorry" for Wynnie because Wynnie enjoys seeing all the neat things his 3 brothers can do. Why?  Because he feels that he can enjoy it through them.  Ben was still mad and then I told him Dori is like all men -- men always like to show off to girls, no matter how old they are.

The end of February marks International Rare Disease Day so in honor of that I would love to bump up as many views on the babies' YouTube video as possible.  As of this morning we were at 6,300 views. By the end of next month I'd love to see that 10,000 have met Dorian and Wynn and spread awareness about ML2/i-cell disease. Can you please help me share our YouTube video to all your friends and family?  Here is the link… thank you!!

Wednesday, January 1, 2014

Happy New Year -- Dori and Wynnie Style

In typical Dorian and Wynn fashion we brought in 2014 with a thunderous bang!! Last week both babies started feeling bad (congestion, fevers etc). We took them to pediatrician an Wynnie tested positive for the flu and Dori was just feverish and sick (no flu). Since Fridau Dori needed to be on oxygen to maintain his o2 levels in the safe zone. Wynnie deteriorated over the weekend and by Sunday night needed to be on O2 too. 
It's insane how quickly they can go from happy & healthy to sick in just a few days. Here's a picture I took last Wednesday (just a day before they started feeling yucky) 
In between all of that - Ben and Alex and I left for San Antonio to attend my Tia Nena's celebration of life ceremony. It was a beautiful service and it was so nice to see all the pictures of her life (a slide show they put together). It meant a lot to me to see so many photos of my parents with Tia in that slide show. Tia was such a beautiful example of a loving and dedicated mother. She was no stranger to sacrifice --- she gave her heart and soul to God, her friends and her family. Ben and Alex had a lot of fun playing with all their cousins. The babies weren't feeling better so I had to leave San Antonio to head back to Dallas. Ben was so upset to leave his cousins he actually covered himself with his blanket in the backseat of the car and cried. I promised him that I'll take them back to San Antonio this summer for a 100% cousin extravaganza. 

Wynnie seemed to have gotten slightly better when I was gone but by the time we work up Tuesday morning he was a mess --- nonstop coughing since 9:00pm the night before. With all that coughing poor lil guy couldn't sleep. We brought them into Children's in Plano and labs confirmed Dori has the coronavirus (named after the crowned shape the bacteria have). The most "well known" strain of the coronavirus is SARS. 
Wynnie's flu was confirmed to be the swine flu. 
The doctor on call said she is impressed that the babies did not get cross contaminated at home. She also gave us props for Ben and Alex not getting infected with what the babies had. We're usually quite diligent about keeping the babies away from each other when they are sick and people probably think I'm borderline rude about not passing around the babies and holding them back and forth when they are sick but I feel my neurosis vindicated alas! :) 
The great news is that they will be able to go home today with us. We'll continue to keep the babies away from each other (poor Dori will keep asking for Wynnie as usual), and we'll keep the boys away from the babies too. I'm so thankful we weathered this swine flu/SARS storm like champs. Dori and Wynn never cease to amaze me. Ben and Alex's concern for the babies and their compassion for our crazy circumstances for when the babies become sick make me very proud. 
After the babies were settled to sleep for the night at the hospital, we left to take Ben and Alex to ring in the new over some Chinese food and Dr Pepper. They earned themselves a fun night out. I love my sweet crazy crew and so thankful for all the extended support of home nurses, friends that are like family, neighbors who entertained Ben and Alex while we were in the emergency room, and Chris for knowing how to calm me down when he sees I am started to stress. Thank you God!! 
Me with Wynnie on New Years Eve

Chris with Dori