Saturday, December 29, 2012

Christmas and NYE




Hoping that everyone reading this had a very merry Christmas this year! December 21st came and went and the world didn't end, but that didn't stop us from throwing a Mayan End of the World party to mark the occasion.  Ben, Alex, Dorian and Wynn had fun hanging out upstairs with Marcia and Dori's nurse Stephanie while we adults had fun downstairs with 30 of our closest friends.  We introduced them to "fire water" (aka Aguardiente) ... I'm always nostalgic for Colombian Aguardiente because it reminds me of my dad (Papi) and all his brothers sitting around telling stories and doing shots of it.

The big buzz on Christmas morning was that Wynnie woke up at 3 AM and saw Santa!!!  When Chris woke up super early on Christmas morning, he says that Wynnie held up his hands and said "SANTA!".  Ben and Alex were amazed that Wynnie saw Santa... it's definitely been a big month for the Wynnster!  :)   This week was his 2 week follow-up and the neurologist said Wynnie's head looks great and his abdominal incision is healing nicely.  It's pretty amazing that in these 3 short weeks, his whole demeanor has pulled a 180.  He happily babbles more, more proactively social, laughs more, reaches for toys and rolls around more, and just overall more awesome than ever.  We are so happy that this operation was a huge success and the old Wynnie is back.

Dorian is having mini meltdowns in the mornings ... he is accustomed to eating, getting dressed and heading off to school.  Since school is out, we stay home and he is NOT a homebody.  He is a worldly man that yearns for hustle and bustle of the streets.  He has had to settle for trips to Target to satisfy his need for action. One of his highlights before school dismissed was having the school wide Christmas sing-along.  Wynnie snuggled with his teacher the whole time and didn't care for all the singing or dancing, but Dorian on the other hand kept looking around, bouncing his body to the beat of the music, and yelling HI in between songs when it would get really quiet.  He is destined for Broadway. Since Christmas Eve he keeps on saying "HAPPY BIRTHDAY!!" so we think he is referring to Baby Jesus's birthday.  I'm glad Dori keeps Jesus as the reason for the season!

Ben and Alex were gentlemen and took me out to dinner the night before my birthday.  We went to Masu Sushi and enjoyed a delicious Hibachi dinner. They were very proud to pay for the dinner with the money Chris gave them.  Alex was happy there was cash left over, he told me I should keep it and buy myself something.   I said "Don't mind if I DO!"  It hadn't even occurred to me to keep the change until Alex suggested it... that kid has street smarts.   Chris stayed home with the babies and rested up because the next night he took me out to a nice dinner to Del Frisco's (YUM!) and then to the Mavs game.  We had a blast and sat next to a family from Nebraska that were visiting town for some medical exams their son needed (he received a serious concussion playing football).  Small world because he plays for one of Chris's childhood friends in Nebraska (Scott Amen).  What are the odds?  I told Chris we are very blessed to live here in a city where we have so many choices of top notch specialists for the babies -- where other families have to travel for hours to have their children treated by the pros.  So blessed!

The only down side to Christmas this year was that Chris's dad Dave fell and broke his hip.  He fell on December 20th and is still recovering in a skilled nursing rehab facility.  But the upside is that the boys will celebrate Christmas again with them sometime next month or in February once Dave is well enough to come down.  Thankfully he is recovering from his fall and hopefully he'll be better than ever once he's all healed up.

Wishing all who read this a blessed end to 2012 and that 2013 brings you much love, fun memories and vibrant health.  Thank you to all who have played a role in our family life this year -- family, friends, neighbors, doctors, nurses... everyone has blessed us in their own special way and we are grateful for the little things that people do that make a huge difference in our lives.  I hope we have helped or blessed you in the same way.... we are inspired by you all.


Wednesday, December 12, 2012

Finally Home - Post Shunt Op

There's so many thank you's that need to go to so many people after this crazy 1st half of the week.  Wynnie did WONDERFUL with his neurosurgery for the implantation of his shunt.  Dr Sacco was very pleased how it all went, and only noted that it took just a slight bit longer to thread the tubing out of his brain under the skin (down the skull, by the ear and down the neck to out his abdomen) because Wynnie's skin is abnormal.

When he said that I couldn't help but chuckle because everything about Dorian and Wynn is "extraordinary".  There's two ways of seeing that word -- things that are beyond what's considered "ordinary" and things that are considered "wow".  I like to think that the babies are a combination of "wow... I am soooo not ordinary!" (and I mean that in a good way because they are truly just such amazing little warriors!!!).   Wynnie's skin had a vast amount of adhesions which makes for a more tedious procedure but his shunt placement went perfect on Monday.

Tuesday we were hoping to leave but Wynnie was having a difficult time snapping out of the anesthetic affects, was desaturating (he couldn't keep his blood oxygen levels in the safe zone) so he was needed to breathe with an oxygen mask, and he wouldn't eat or drink anything.  Thankfully after Chris took over hospital duty Wynnie made a great turnaround with being more alert and finally eating.

After playing good cop/bad cop with on call pulmonary doctors who wanted us to keep him at least another EXTRA night at the hospital for severe sleep apnea, we finally convinced them (with the help of our pulmonologist making a call for us) to allow us to bring Wynnie home tonight.  Now he sleeps with an oxygen tube in his nose until we are able to do a sleep study on Friday night to measure what his O2 levels will need to be from here on out.

Ben and Alex were very sweet and loving to Wynnie when they saw him after basketball practice.  Ben said "Wynnie is tougher than me!  Good job Wynnie!" after seeing his horseshoe shaped incision on the top of his skull and the button sized scar on his tummy.   Dori enjoyed the exclusive attention without Wynnie but is now glad his twin is back to share the limelight.

Although Wynnie stayed at the hospital for 36 hours more than we had anticipated, we are so happy to have him back home without any major hiccups.  The staff at Children's is amazing... Wynnie received a sweet little brown Christmas teddy bear on his way out, and while we were packing up a group of volunteer Christmas carolers came by the room to cheer us up.  A group of volunteers also created a beautiful blanket that we were given at surgery recovery.  It's amazing how those "little" gestures that people do to volunteer can make such a "huge" difference for families going through stressful times.

Thanks to all of you that called, texted and prayed for Wynnie and our family.  Thanks to Ben and Alex for praying for their baby brother and being so gentle and sweet to him tonight.  And thank you to Chris "Papi" Johnson (el jefe) for being such a great partner throughout all of this.  Now on to enjoy the holidays!  :)

Friday, December 7, 2012

New Brain Surgery Update


Wynnie's new surgery date is now scheduled for Monday 12/10.  After going in yesterday afternoon to discuss the MRI results, we discovered that Wynnie's blockage in his brain wasn't in the spot Dr Sacco thought it would be.  Doing things as expected or "normal" would be too boring for Wynnie, he likes to play "stump the doctor" and he's really good.  :)


As you'll see in the picture here, Wynnie's blockage is instead down at the bottom of his cerebellum.  Before examining the MRI we thought Wynnie would get the EVT procedure (drill a hole at the bottom of his head) to help his body naturally drain out the cerebrospinal fluid.  But since the blockage is in a new spot, an EVT would be roughly 75% effective... vs inserting a Shunt would be virtually 100% effective at draining.

What's a shunt? It's a small flexible plastic tube & valve inserted into the CSF (cerebrospinal fluid) system that creates a new drain for the CSF fluid to empty out into the body.  The picture shows it pretty good.  It's a little more involved of a process but it's also a "24-hr hospital stay" procedure that could have him home by Tuesday afternoon as all goes as planned.  The vast majority of infants/children that have shunts have no problems with them and they can stay in there for life without any major maintenance.


After all of this... Chris and I know we should have gone to medical school... this stuff is all pretty fascinating.  There are no do-overs so now it's time to put major pressure on Ben and Alex to go to med school so we can live vicariously through them!  ha ha!!

Thanks everyone for staying up to date with us and sending us so many kind encouraging words, offering up prayers and just being there!  We are very blessed to have such a caring group of friends and family that have been there with us since day 1... we'll keep you posted on Monday to let you know how Wynnie does on his big day.  

Tuesday, December 4, 2012

Wynnie's Operation & Random Facts

Wow it's been a fun and busy fall.  Ben and Alex competed well through football tournament play.  Although we lost in the final round to go to the Super Bowl, they played tough and with heart.  We're so proud of them.  Chris is glad to move onto focusing on Big Red Basketball... his teams are practicing  well and it's nice to have a couple of extra nights free again now that football has come to an end.

Wynnie is getting brain surgery performed on Thursday for his hydrocephalus.  He has an obstruction in his brain that is not allowing the fluids to properly drain, thus it's putting a tremendous amount of pressure on his brain and has forced his head to grow at an abnormally fast rate (compared to the rest of his body).  After a cat scan and a sedated MRI, it was clear from his neuro surgeon Dr. Sacco that his quality of life was highly dependent on moving forward with the surgery.  Instead of doing a typical shunt procedure (where is foreign object is placed within in brain to facilitate draining), he suggested doing a ETV  (Endoscopic Third Ventriculostomy).  With ETV, they drill a tiny hole in the floor of the 3rd ventricle to allow for a new "natural" way of draining the cerebrospinal fluid.  All the pressure on his brain has slowed his development (both physical and social).  Dr Sacco said we should see a reverse of this regression within the first couple of weeks of surgery.  If left untreated, excessive pressure on the sections of the brain that control the heart, lungs and movement could prove fatal to Wynnie so we agreed with the doctor to move forward at quickly and cautiously as possible.    Although it's major brain surgery, if all goes well as expected, he could be sent home within a day after surgery.

So keep Wynnie in your prayers as his nugget goes from supersized to regular :)

Ben and Alex are excited about the upcoming holidays and have fun finding their Elf "Jacob Lester" every morning.  Due to their inattentiveness, they allowed Luna to poop inside the house while Chris and I took a quick 36 hour trip to Indianapolis for the husker's Big 10 football championship game.  When we came back I wanted Jacob Lester to leave them a note of his disappointment in their care for Luna and have a trail of chocolate chips behind his bottom.  Chris deemed it inappropriate although I thought it was the funniest thing ever so I will just have to keep that gag to myself.  

Well I'm off to a work meeting in downtown, but just wanted to update everyone on what's going on in Johnsonville.  Late breaking news... Viktoria, our nanny, got ENGAGED over the weekend!!  We are very happy for her!!  I think Ben is jealous.  Dori is beyond angry with the news... she is his girl.  :)

Monday, November 5, 2012

October/November 2012

 Happy 4th Birthday Dorian and Wynn!
 Our annual MPS Society Fundraising Halloween Spooktacular
 Fun times sight-seeing in NYC with Ben and Alex
The babies felt Halloween was a little over-rated this year.  NOT us! 

The boys after their undefeated season finale this weekend. 

What a fun and busy fall it has been!  Dorian and Wynn have bumped up their schooling to 4 days a week now, Ben and Alex are running from homework to practice to bed time, and I've managed to escape for a girls trip to Florida amid all the craziness with my friends Hayley and Jaymie.  

The babies had fun celebrating their 4th birthday... the theme for this year's party was Tigger and Pooh because Wynnie looks and acts chill like Winnie the Pooh (same body shape for sure!) and Dori is always climbing and rolling over him like Tigger.  It's been neat these past couple of weeks to see Dori take an active interest in Wynnie. He calls out for him and rolls over to him to see what he is doing.  Dori should work for Homeland Security someday because he has a never-ending need to know where everybody is and what everyone is doing.  :) 

Wynnie will be seeing a neurologist this week to check out his head... it has been growing at an abnormally fast rate so the neurologist will confirm if it's fluid collecting in the brain (hydrocephalus) and whether there is anything we can do about it without it being too invasive or risky of a procedure.  As long as it's not causing him any immediate pain, we are happy with his cute big nugget as is.  

Does this video work?  While I was writing this blog entry, the motorized home health equipment folks came to test Dori out with his new power-chair.  He won't receive it until at least 3 months from now so paperwork is underway to begin the ordering process.  Viktoria and I were SCREAMING with excitement once Dori got a hang of it.  He was so proud of himself.  So so neat!


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Ben and Alex finished another undefeated football season and are well into practicing for Big Red select basketball now.  Great job Colts!!!  Our boys all played well together and many of these boys have played football since they were 4/5 years old!  It'll be sad to see the team break off a little but for next season all the parents know that Chris and his faithful Colts coaching staff are handing over the reigns to allow the kids to move onto the select football level.   We are so proud of all of them!  

Ben is still very obsessed with mansions and keeps wanting to visit the other side of our neighborhood to visit his friends that have "mansions".  He even set up a date with a girl in his class and he kept waiting for her dad to come pick him up to visit her in her "mansion".  Many hours later, he was disappointed that the dad never showed up to pick him up as Ben and the little girl had arranged in class.  Well I guess at least Ben will have the ambition to "marry up".  ha ha!!!  We've talked to him at length about appreciating the lovely home we have and to not be envious of what others have --- but it tends to go out one ear and out the other.  

Alex is busy in his world of comic books, action figures and Luna.  Actually both boys can't get enough of Luna.  Alex keeps himself busy with his school work and can call all the plays/penalties when he watches college and pro football.  It's amazing how much his and Ben's knowledge of football has blossomed over the past year.  Ben, Alex and Chris can now all scream at the TV together while they watch the Huskers.  Wynnie just smiles at the chaos while Dori tries to imitate what they are screaming.  It's more entertaining to watch them than the actual games.  

Before we had the babies' birthday party, Ben kept on asking when the babies' friends would come over.  I said "what friends?"  and Ben said "How can they have a party without their friends coming over!"  Since the boys were so worried that the babies didn't have any "friends" coming over, they set up a bunch of stuffed animals on the kitchen counter with hats and sunglasses to fill in as friends.  Alex made a sign on the wall that read "Say Cheese" so that we'd all remember to smile for pictures.  That really warmed my heart!!  

Wishing you all a great fall season and a peaceful Thanksgiving with your friends and family.  When you get a chance, come on by and visit... I'm sure Dori will love to show you all his new tricks!  






Friday, September 21, 2012

Wife. Mom. Superwoman

Please look at this beautiful article written about our family in this new blog.  Feel free to begin following her blog updates, Diedre and her team do a fantastic job of with timely and relevant articles -- very entertaining and inspiring!

The blog is called "Wife.Mom.Superwoman."  It's a title all of us hard working mamas share.  Now where's my cape??? :)

Here is the link:
http://www.wifemomsuperwoman.com/2012/09/21/mountain-mountain-womans-heroing-story-survival-chance-hope/

Tuesday, September 18, 2012

Random Observations

Happy times on the floor
Ben and Alex's 1st day of 3rd Grade
Family picture day with Dave and Gerry

These are in no order... Just random thoughts I started writing this over a month ago about my 5 most favorite people :)

1.  Ben loves loves loves Luna. He is happiest when she is snuggled up on him while he watches TV and he announces to everyone in the room "look at Luna! What a good snuggler she is!!" and when she gets up his feelings are crushed. Luna thinks she is a lap dog. She weighs nearly 40 pounds so she is not small.

2.. Wynnie is the most laid back baby on earth. He is happy as long as he has a toy and as long as he is not constipated.  He is also the world's best cuddle bug. Ever.

3. Dori definitely needs to be in the middle of the action... Whether it's being held or being entertained or chasing his brothers or Luna around. If he doesn't feel he is in the mix, he will promptly and loudly let you know.  He is not ashamed to fake cry because fake cries work wonders :)  I wouldn't go as far to say that he is high maintenance, but....

4.  Dori is a one man musical show. Out of his 12-15 waking hours, he probably sings through 11 of them. I love it... He has music in his heart and mind all day long.

5.  It's funny to hear Ben and Alex have "man talk" with Chris at dinner. "so... How was your day at work Papi? Did you work on the computer and help people today?".  Also Chris taught them to "eat like men" means eating your pork chops with no utensils.  So every now and then, Ben will say "Can we eat like men tonight?"

6. Alex is very proud to have done boxing classes this summer.  He likes to show people his moves and he would like to box in the Olympics some day. He was the only kid in class so he thought that was neat to keep up with all the adults.

10.  Dori makes the best faces. The Stinky Winky and The Funny Face are perennial favorites.  Check out the video I embedded on the bottom of this and you'll see.

11.  Dori and Wynnie broke alot of hearts at summer school this year. I truly think Wynnie believes summer school was Snuggle Camp.  I'm glad they "failed" the assessment test that in turn proves they needed summer school. What's that mean? They qualified for summer school because it showed that their cognitive and physical progress made during the school year would be regressed if they did not do summer school. I know they loved the socialization aspect of it and they were always pooped after a long day of hard work at school.

12.  Ben and Alex have loved golfing with Chris this summer. It's male bonding at it's finest. I like how they spend fun time together -- whether it's shooting hoops, watching football games in the backyard or reading together.

13. When you change Wynnie's diaper, he likes to have his tummy smacked with the clean diaper. Sounds weird but he cracks up every time!

14.  Wynnie will be playing by himself on the floor and out of nowhere he will start busting out laughing. We have decided that his guardian angel is a comedian and is always trying new material on him.  His chuckles are contagious!

15. Dori's Occupational Therapist swears that in all her years she has never seen a baby that can roll around as quickly as Dori. She calls him the Torpedo.

16.  I thoroughly enjoy watching Chris coach the boys' football games.  He jumps up and down, he screams and he is the most animated coach I've ever seen.  The kids love it, and the parents do too.  He plays it up pretty good because I tell him it's pretty hot (hee hee hee!).

17.  The boys are enjoying the 3rd grade and the babies are enjoying their new school just a few minutes away.  The babies still have all their same teachers, classmates and therapists so there was no adjustment period for them.

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18.  The babies are going to be FOUR years old next month!!!  It's unbelievable how well they have done and how happy they are.  We are truly blessed to  celebrate another love and laughter-filled year with them.

19.  Get your creative caps on and start planning your killer Halloween costume.  This year's annual Halloween bash to benefit the National MPS Society will have a dead celebrity theme.  I was going to mock up a Whitney Houston costume but I'm not mechanical enough to fashion a cardboard bathtub around me.  Politically correct?  Of course not!  Tons of fun in the name of a great cause?? Heck yeah!!  Mark your calendars and book your sitter... Friday Oct. 26th will be the big day!






Friday, July 20, 2012

Make Em Laugh

Sometimes when I need a break from the summer "I'm bored mami, what can I do now?" request, I put Ben and Alex on task.  The game is called Make Dori and Wynnie Laugh.  Not the most creative of game names, but for 20-30 minutes straight the boys have to compete on which baby laughs the most and the loudest.  It turns into a scene straight out of The Three Stooges.  The babies respond really well to the boys bonking each other over the head, wrestling, running and jumping, or talking loudly in really high pitch voices.    Did I mention it's also not the safest game in the world?  You automatically lose if you start crying (from getting hurt) or if you start complaining that the baby assigned to you isn't appreciating your efforts.  Abrupt disqualification is avoided at all costs.

But the best part of the game is that Ben and Alex spend quality time with their baby brothers... all in the name of healthy competition. It's so easy for them to get absorbed with cartoons, toys or video games that sometimes they can go a whole day without really interacting with the babies otherwise.

 Tonight's installment of the game was under the pretense for my own downtime to check emails.  Usually I use the game time for a coffee break on the other side of the room or to cook a quick lunch for myself or the boys.  All this is just easy little ways to cut down on stress because sometimes having the kids home all day AND working from home can be a little daunting.  I'm grateful for Viktoria's help throughout the day... if it weren't for her I'd never be able to do a conference call without screaming/laughing kids in the background.  No matter how far women have come, it just doesn't sound very professional to a client if they can hear my kids having a dance party in the distance.

I'm also very thankful to my dear friends and trainers at LiveWire fitness.  Jennifer Reid was introduced to me by The Revolution producers, and although the show was not renewed for a 2nd season, it gave me one of my most genuine friendships.  I'm still working out 6 days a week at the gym on my own, but now I also do their night bootcamps twice a week.  Getting together with my bootcamp buddies to burn calories has been another great source of camaraderie and stress relief.  They are a lot of fun!  Chris gets all the recaps of all the jokes and funny stuff that goes on at bootcamp when I get home.  Also if I didn't have Chris's support in being gone two nights a week my escapes wouldn't be a reality.  And don't get me started about Miss Marcia-- for those of you that know her there is no introduction necessary, but those those that don't she is a combination of Oprah/Ghandi/Nurse/Grandmother/Fashion Editor/Mediator/Honorary Grandmother all rolled into one. Note to self: I need to make her a business card with that title on it.

I guess I am just feeling especially thankful for all the great friends, neighbors and family that make my job as CEO of Mi Casa Loca a manageable reality.  To know us is to understand the chaos ... but if it were too much like Leave it To Beaver around here I would feel like I was missing out on some cool memories to be had.


Friday, June 29, 2012

Wynnie laughing with Ben

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Introducing Mr. Chuckles!
Enjoying our 1st sail as soon as we arrived to hotel from airport

Here's another fun little video.  Ben put on Chris's shoes and was stomping around... Wynnie thought it was the funniest thing on the planet.

The babies started summer school last week in The Colony.  They are happy to be around their old friends from school and are expanding their social circle by meeting new teachers.  Last week was the first week of the summer that Ben and Alex didn't go to any camps so they finally enjoyed a lazy week of summer of looking for playmates, asking if they can play video games, and claiming boredom until creativity strikes and they are on to their next adventure.

Last week Chris and I escaped to St Lucia for 5 days to enjoy some much needed together time and some nice sunshine.  Our highlights included taking 2 catamaran sails, visiting the grand Piton mountains, snorkeling, paddle boarding, spa treatments and lots of great food and drinks.  We stayed at an all-inclusive so it was very nice to get as many spa treatments, snacks and drinks as we wanted without worrying about a budget.  Chris celebrated his birthday by smoking a big fat cuban cigar so I think he had fun.  The only downside was when I showed Ben and Alex the picture of Chris smoking, they freaked (Red Ribbon week at school has indoctrinated them VERY well about the dangers of smoking and drinking).   We had a blast and it was nice to come home refreshed and ready to enjoy the 2nd half of the summer with the 4 boys.

Luna started puberty this week and it's been "interesting" explaining it to Ben and Alex.  Ben keeps on saying she is gonna "poop out her babies".  It's been a hoot!

Dori talking up a storm

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I love this video of Dori talking with me while Wynnie plays in the background.   Dori is quite a ham these days... loves to get a reaction out of people.  Here's also a video of both Dori and Wynnie playing.  Poor Wynnie gets stuck in the background while Dori manages to work the camera.  :)

Friday, June 1, 2012

Spring Picture Update

On May 5th my sweet friend and Phi Mu sister Jennifer came all the way from Louisiana to help sponsor our 1st annual MPS Society Charity Bootcamp.  yay for Cayenne Marketing

Jennifer Reid, my personal trainer and brainchild/master planner of the bootcamp, kept the families energized. 

The highlight event in the bootcamp was our obstacle course.  Adults burned lots of calories and the kids had a blast

This girl is my hero!  She did every station in our bootcamp with a smile on her face (and YES, a prosthetic leg).  If she can workout, ANYONE can

We took a family trip to Florida to take the boys to Disney and Universal Studios.  With only 1 free day I was able to visit Cary for an afternoon.  Seeing her reminds me so much of why she was my mom's best friend.  Christy is her granddaughter, pictured left. 

Wynnie was not happy being given Mickey ears, but I couldn't help it 

This is us within only a couple of hours after landing... we were so excited 

Magic Kingdom...where dreams come true.

Viktoria took this picture of us after we ate at the German beer hall at Epcot.  LOVED IT

Doesn't Wynnie look like a Minion? 

Great pic of Chris, Ben, Alex and Viktoria at Animal Kingdom.

Viktoria and I at the school district's special needs swim party.  Dori and Wynnie grew tired of all the bikinis within 30 minutes.
By how angelic they look, you'd think they've never seen a timeout or spankin' in their life  :)



Today was Ben, Alex, Dorian and Wynn's first day of Summer.  yaaahooooo! School is out and lots of fun times are planned ahead.  We got started in on the fun earlier this spring when we took the boys, babies and Viktoria to Disney.  We had to go during the school year while the weather is still comfortable in Florida since the babies get overheated quite easily.  The babies amazed us at how laid back and happy they were from the moment we boarded our flight, all throughout the parks and restaurants, and all the way back to Dallas.  They were champs!  We truly believe they knew they were on vacation.  Ben and Alex were nuts over how fun everything was at our hotel, the Disney parks and Universal Studios.  Even Chris, who had never been to Disney, was enjoying all the attractions. We were blessed to have Viktoria go with us to help us with the babies.  

Two days after we returned from Disney my dear friend and trainer Jennifer Reid (owner of LiveWire Fitness) and all her trainers led over 150 people (young and old!) in an outdoor bootcamp to benefit the National MPS Society.  We had a DJ, a bounce house, a fire truck, face painters, goodie bags and raffle items for the participants.  Jen worked SO HARD to put this bootcamp together, I am so grateful of her motivating energy and selfless friendship.  She rocks.  Speaking of awesome "jens'... my sorority sister Jennifer LaPierre drove all the way from Louisiana with her husband and 2 kids to sponsor and participate in our bootcamp.  It's truly a blessing to be friends with women that inspire me to be a better woman myself.  I was overjoyed to see the enthusiasm and fun everyone was having at our bootcamp.  Thank you all who participated and donated that day.

Ben and Alex did their 1st Communion Sacrament last month.  They were the only kids in the group that kept on running to the bathroom throughout the mass.  They were able to "hold it" for the actual ceremony thank goodness.  They looked so handsome...  We are so proud of them.

Dorian and Wynn had their end of year swim party and enjoyed all the hoopla that came along with it.  Due to the overpopulation of our neighborhood - they are shipping off all the special needs kids out of our elementary school and moving them to another elementary school 10 minutes away.  I'll be sad that all 4 boys will no longer be in the same school, but at least we have this year's yearbook as our nice reminder of when they were all under the same roof.  :)  

The babies saw their new cardiologist last week.  Our old cardiologist no longer accepts our insurance so we were referred by our pulmonologist to Dr Lemler at Childrens in Dallas.  He found that Dorian has cardiac myopathy and his left ventricle is enlarged.  Myopathy is basically when the heart muscle is not able to function as well as it should because the muscle is either enlarged, thickened or stiff.  How is it "fixed"?  Heart transplant.  Are we considering putting Dori through a heart transplant?  No.  It wouldn't change his underlying ML2 problems ... heart transplants are highly invasive and would require months of hospitalization and testing for him -- no need to put him through that when it won't improve his quality of life.  So what does it mean that he has myopathy?   Not much... just that he'll be closely watched by his new cardiologist on a more frequent basis and that his meds have been bumped up.  If you ask Dori what he thinks about this?  He'll just say HI and sing you a song.  

As for Wynnie, he heart is fine.  No significant changes from his last set of echo's and EKG's so his meds are kept the same.  He got new hearing aids and is enjoying wearing them, but one of them broke last week so I need to take them to the hearing aid place to get them fixed. 

Chris and I celebrated our 14th wedding anniversary a couple of days ago.  We will be celebrating by going to St Lucia next month.  yay! (without kids)  Double yay!! 

I had a very nice Mother's Day.  I was treated to breakfast at iHop.  CHris worked in the yard for a long time with the boys... so much so that Ben said "I can't wait til Father's Day!!  That's when mami will have to do everything!".  The boys made me cards at school that really warmed my heart.  Alex's  said  that I was as pretty as the Virgin Mary (in the past he has said I'm the world's 2nd best mom... 2nd to the Virgin Mary), and Ben's card said that I love him very much and that he likes it when I make my funny faces at him.  Well with 4 boys I'm certainly no virgin (ha ha), nor should I be compared the the Virgin Mother Mary... but Chris, the boys and the babies surely made me feel very special on that special day.  

Summer is in full swing so Ben and Alex will be busy with camps all through the month of June.  We expect to host lots of fun sleep overs, swim parties and play dates in the near future... so we're stocking up the fridge with ice-cream sandwiches, bottled waters and gatorades.  When will you come to join us?  We wish you all a happy start to your summer season and hope to see you soon.




Thursday, March 15, 2012

Andi

Andi at Ben and Alex's birthday dinner (2/9/12)
Andi in the red shirt at babies' birthday party (10/11)

Nearly a month ago we sadly lost Chris's sister... Andrea J. Johnson. Andi was always a very loving and supportive sister to Chris, an adoring aunt to the boys and the babies, a faithful daughter to Dave and Gerry, and a wonderful friend to everyone who knew her.

It was a very unexpected passing that shocked all of us. We are thankful to Steve, her fiancé who had made her so happy this past year. They were building a new home and making all the final plans for their wedding scheduled for this summer. She was at a really good place in life -- enjoying much success at work and looking forward to a beautiful new life with Steve. Alex put it best when he said "I'm not done with Aunt Andi... I wasn't done with seeing her."

I guess that's how we all feel when we lose a loved one -- we feel like we are not "done" with everything we wanted to do and share with them. Today out of the blue when Ben was sitting quietly after spending time at the Skate Park, he was just staring out the window and he said "Poor Aunt Andi, she won't be able to go to her wedding anymore." I know it was never a real consolation to me when people would tell me this about my parents, but I told him "She is in the most beautiful place on the universe now... better than any wedding could ever possibly be! She's happy." It's been a tough lesson for the boys to learn, and a hard reality for the rest of us to accept that she will no longer be physically with us. We are happy of all the great times we all shared with her and will forever honor her memory. Ben likes to look at videos of Andi on his iPhone that he took of her in February. I'm glad he can do that.

It's taken me a long time to write this entry because there is really nothing I can say to encapsulate what a loving person she was to the people in her life. If you knew her, you know that her nephews were her joy, KU basketball was nothing short of awesome, and Husker football was... well... everything in Nebraska revolves around Husker football!!

While growing up she was Chris's #1 fan in everything he did. She rarely ever missed a game -- whether he was in high school playing or coaching college players on the sidelines she was always proud to talk about her brother's success on the basketball court. In many ways she gave me a glimpse of what a devoted partner I should turn into for Chris because Gerry and Andi have always surrounded him with such an abundance of love and support. No words can really give tribute to her ability to love, her ability to share a laugh and make everyone feel better, her ability to always give an encouraging word, and most importantly her ability to give. She always gave her best to those she loved, it was her way of showing she cared. I hope I can learn to give as much as she did. She has left quite a legacy.

Tuesday, January 10, 2012

Wynnie in front of his locker at school
Dori celebrating the rockin' New year

Happy 2012 to all of your friends and family who share our journey in this crazy life of ours. We hope the holidays brought you peace, health and happiness. We are hopeful that this new year will bring us many chances to see good friends and enjoy good times with our family as all the boys get older and a little wiser.

Our big highlight on Christmas morning was Ben and Alex waking us up with ALL the excitement and commotion humanly possible at 4:45 AM because Santa had dropped off their presents already. No sense fighting a losing battle, we all went ahead and woke up and were opening presents and laughing by 5:00 AM. By 7 AM it felt like it was noon! :) All four boys had a fun Christmas and have been having a nice time playing with all their new goodies.

Chris and I have been able to spend a bit of quality fun times together over this past month. For my birthday he surprised me with a evening out and a fun sleep over at a hotel here in town. It was fun and I was glad we got away for the night... it's nice to take our "mom and dad" hats off for one night and just have fun like the olden days. Then for New Years Eve we had a blast celebrating with our friends in the neighborhood the coming of the new year.

Ben and Alex had a short Christmas vacation but we were all very excited upon the return to school on Jan. 2nd because now the babies are officially schoolmates of theirs. We're grateful that the school district offers special education preschool for children age 3 and up. Dori and Wynnie qualified for enrollment into the Functional Life Skills class at Castle Hills Elementary. All the kids in school stare as we bring the lil babies into the school bundled up in their blankies, but we know the babies are loving it. They come back from their Tuesday-Thursday morning classes absolutely exhausted, but always grinning from ear to ear. All that reading, writing and arithmetic is tiring on the big fellas but we know they are learning and making new friends. Honestly, they have all those ladies wrapped around their finger. They get additional PT, OT and Auditory Therapy through the school as well.

Chris and I are really proud of the impact the babies are making to those around them. Here is an excerpt from an email their Auditory Therapist sent me... it really melted my heart:

I just want to tell you what joy your boys have brought to Castle Hills. I am so proud of you for making the leap of faith to try the school setting. I know that must have been a very difficult decision just have them leave the safety of your home and trust a whole group of new people.

I will be going in every Wednesday morning to work with Wynn. I just wanted to tell you that I think the world of you and your family! I was thinking how many people lives Wynn and Dorrie have touched and it is so amazing and powerful!


Powerful indeed! My chest is sticking out just a bit farther out, and Ben & Alex are excited to walk their baby brothers into school in the mornings. Someone asked me last week "Why do you still call them babies? They are 3 years old now." Well... that's true. Technically they aren't babies anymore, but they are always going to be our babies because they do what babies to best. They give the purest of love, they are happy to cuddle all day long, and their worlds aren't tainted with the stuff that stresses the rest of us. I'm glad to call them our babies because sometimes the best therapy for us is just to enjoy them... no pill can do that.


Well... I gotta help the babies do their long division now! Hoping you get the wild idea to come visit us here at la casa de Johnson, we would love to see you in 2012! With open hearts we hope the Lord continues to bless us and that he will continue to bless all of you as well.