Friday, October 4, 2013

Healthy Noggin, Happy Parents!

Only Chris knows that I was really upset 2 weeks ago when the possibility of Wynnie's shunt having failed had come into the conversation with our pediatrician.  Not only was I upset, I was straight up bawling and Chris had no clue why I was upset and who's fault it was that I was crying.  Sometimes I actually feel sorry for men having to navigate through their wife's emotions.  A shunt failure is very bad news with lots of implications that I didn't want to deal with.

Today our neurosurgeon confirmed the most greatest news -- the shunt is working just fine.  There is no indication of swelling or cranial pressure.  What does that mean?  Wynnie is not living in constant pain with throbbing headaches.  I had to ask her three different ways because she was talking lots of neuro lingo and for as smart and Chris and I like to think we are -- I had no idea if she was telling us good news or bad news. From reading Chris's facial expressions, I don't think he knew either.  Once it got through my thick skull that everything was ok, it felt like a huge relief!  Not only is his shunt working well, it's actually ok for him to have a little bit of fluid in the brain to help cushion everything.  What we thought was maybe worsening hydrocephalus in the scan was just his normal fluid (considering all his other underlying conditions) for him.  His head has actually slightly decreased in size (which is proof his brain isn't swelling like it was before the shunt operation)

Thank you Wynnie for giving our family a big victory today!  Thank you for letting us rest our minds from worry.  Any minute wasted on worrying is a minute wasted on enjoying you Wynner.  

Thursday, October 3, 2013

Fall 2013

Dori surrounded by food -- he was in PARADISE!  

I don't know how much Luna was enjoying this but Wynnie certainly was
Gomer Pile?
Wynnie watching sports with Chris outside
Wynnie during his CT scan, confirming fluid is re-accumalating in brain (hydrocephalus) 
Wynnie imitating Miley Cyrus.  
Ben in his "baseball ready" stance
Dori working on his art during occupational therapy with Miss Rhonda
Thanks to all our friends and family who donated for Ben & Alex's Boosterthon Fun Run.  Ben is busting a move in the Boys vs Girls dance off.  Clearly, he made the boys win! He's on the far right on the floor.

It's been super busy lately.  Business travel, lots of studying for Chris (CFP exam next month), sports for both Ben and Alex, and all kinds of appointments and meetings for the babies.  I'll keep this blog entry to a list and let all the photos and videos do the "talking" for me. 

1)  Wynnie has an appointment with his neurosurgeon tomorrow.  Unfortunately the shunt may not be working as well as we had hoped to stop fluid from accumulating in his brain.  The original doctor who was a total rock star left Childrens so we will be seeing another neuro at Childrens.  Not focusing on worrying or stressing about it until we get the official prognosis and game plan. Easier said than done.

2)  Ben asked me yesterday if there's recess in college.  My response "anytime you're not in class or studying IS recess."  His eyes got real big and he cupped his hand on his chin...real pensive like.

3)  Alex said when he grows up he'll buy 3 black GMC SUV's so that everywhere he goes he'll have all three driven at once so that people think he is in the CIA.  I said instead of paying people to drive around him all day, he can just actually WORK for the CIA.  Obvisouly that thought hadn't even occurred to him.  I just saved him about $75,000.  You're welcome Alex. This conversation was preceded by Alex announcing that he'll miss me terribly when he goes away to college, but he'll look forward to eating pasta for breakfast, lunch and dinner when he gets there. 

4)  Dori continues to eat eat eat nonstop.  If he's not singing, talking, calling off everyone's name like roll call -- you can count on him eating.  We think he has a hollow leg. 

5)  Ben has been playing like a boss in the outfield for baseball.  We are so proud of him!!  His coaches have taken notice and we're happy to see him take a leadership role both in the outfield and in the dugout.  Go Ben!!!  

6)  Both Ben and Alex (along with all the other 4th graders in the Lewisville school district) have received their own iPads to use for class projects.  It's amazing to see how focused they are in using their educational apps, messaging their friends, and playing a mean game of Madden.  It's inspiring to see how the teachers are integrating the technology into the learning process.  All we had growing up was Oregon Trail.  We had to touch something plastic to "ground" ourselves before touching the massive computer.  Remember that!?  Don't get me started about the prehistoric graphics on that game... worse that I always lost due to starvation or lack of survival supplies every single time.  That game was bad for my self esteem now that I think about it! 

7)  Luna has turned into a very protective and mean dog -- but she is only mean and protective when she's in the car when we take/pick up the babies from school.  Nobody can have any hand/arm/object in the car that isn't just myself or the babies. You wanna open the door (not me)?  She'll bark at you.  You wanna put the babies' backpack in the car through the open window?  She will bark in your face.  You wanna help buckle the babies into their car seats?  She will growl at you and be stuck next to the babies face until you finish.  I'm the only one who can do it.  So strange since at home we have tons of nurses and therapists in and out all day long and she is always happy and excited to see them.  

8)  October is Dori and Wynnie month!!!  Our 4th annual National MPS Society Halloween Spooktacular will be on October 19th.  Looking forward to a great time.  The babies' FIFTH birthday is on the 27th!!  What a huge milestone!! We've been heartbroken by the number of ML2 babies that have passed away this past year so we feel especially blessed that God has allowed us yet another year to love on, snuggle and play with our two precious angels on earth.  

9)  Dori has replaced some of his standard nursery rhymes for R&B songs. His favorite is NeYo "Let Me Love You".  He also chooses at times to not sing like a baby, he sings fancy... like adults where he drags out the notes and maintains his pitch and shakes the length of the note. It's so stinking cute!!!

Stay tuned for more news on Wynnie's neuro consult, Ben's blossoming baseball career, Dori's massive overeating frenzy, and Alex's predictions on his future.  Thanks for your continued prayers and friendships!!  We hope to see an abundance of creative and scary costumes for our party (pictures will definitely be shared here!) and look forward to raising money in hopes of a cure.  Happy Fall Y'all!  

Monday, September 2, 2013

Labor Day Weekend

1st Rule of Crime... deny, deny, deny!

Wynnie likes to snuggle when he watches football

The most entertaining part of the Nebraska vs. Wyoming game was the photo bombing 

Happy Labor Day weekend!  I hope everyone has had a restful and fun past few days.  We kicked off our weekend with good old steak and eggs and enjoyed Saturday watching football games. It's one of Chris's happiest days of the year -- kickoff day. We hosted our 5th annual football watch party and our friend Scott smoked ribs, beef brisket and pork shoulder. It was SO delicious!!  We had a fun time watching games and catching up with all our friends.  

Alex has started his process in getting braces for his underbite. This past week he had his temporary spacers placed to make room for his jaw extender next week.  Then for his 3rd visit he'll actually get the braces on.  Woo hoo!!!  This is all new to us since neither Chris nor I ever had braces.

Not much going on... babies are enjoying being back on their school schedule (4 days/week for 2.5 hours a day), Ben and Alex are excited for the iPads they'll be getting from their school next week, Chris is busy studying for his CFP, and I'm getting back in motion with work.  September will be a busy month for all of us with football, work travel and school -- but that's what makes September so much fun. 

Monday, August 26, 2013

1st Day of School 2013

1) Ben and Alex shopped at all the finest discount stores for their new cologne.

2) Dori and Wynnie were all packed up with diapers, wipes and baby food in their backpack. No room for books.

3)  5th Annual iHop "Thank Goodness the Kids are FINALLY Back in School!!" breakfast was coordinated.  Chris once again was the only male present. We don't discriminate even though this year the invitation was intentionally given to dads too.

4) The only known mishap on the big day was that Dori pee'd all over his teacher just 5 minutes before I picked them up.

Overall, it's been a fun day and I look forward to hearing all about Ben and  Alex's new 4th grade adventures when they come home this afternoon!

Notice Luna looking sadly from inside the window. Alex was all worked up this morning about how he was going to miss her.  Didn't mention a darn thing about missing his selfless and devoted mother. 

Wynnie was checking out Mrs G, not sure is he was ready to get back to the whole academic thing.

Dori was so proud to show Chris his super cool locker to Papi today.  

Saturday, August 10, 2013

Summer School and Blind Driving

This past Wednesday was Dori and Wynnie's last day of summer school.  Here is a picture of them with their lead teacher, Mr. Miller.  Dori has been very upset since school ended because now he doesn't have a specific place to go every morning.  He keeps asking anyone who has a set of wheels if they can take him "bye bye."  Whether it's the therapists, the nurses or friends that come to visit, Dori is always trying to hitch a ride out of here.

Last day of summer school 
"Me and My Shadow"

Ben is always on the quest of the perfect picture of Luna snuggling with him.  This is as good as we could get the other night.

I finally was able to capture a video of Dori driving with his eyes closed for his therapist.  Notice how he squints his eyes and pretends like they are closed.  What a stinker!  That's why we have so many dings and chipped paint around the house...wreckless driving.   

Just a couple more weeks until all 4 boys head back to school and our normal routine will be back on track.  Chris is busy studying to finish he CFP this fall, September is busy for me with a couple of speaking engagements and business travel, plans are sprouting for our annual MPS Halloween party, and the boys are getting geared up for basketball and football season to start in just a couple of weeks.  Chris is doing all his Husker research and getting ready for football season to begin and I can't wait for temps to drop just a little so I can start training for my half marathon.  Fall has lots of fun things in store for our family!  If you are in the neighborhood, just stop on by any random Saturday and you'll find us all in the backyard watching college football.  Don't be a stranger... Dori would love to show you his mad driving skills!  

Sunday, August 4, 2013

Ozarks and Dori

Every summer I plan a trip where it's just Ben, Alex and myself -- a trip where we can bond, tell silly jokes, learn stuff, visit cheesy restaurants, try new things and make new memories.  This year's trip happened to land on the same week Dori was slowly recovering from his Emergency Room visit for his inability to maintain his oxygen levels.  Chris convinced me that Dori would recover just fine without me -- that between his angels that assist in taking care of him during the day and his night nurses all will be well.

So with lots of worry in my head and guilt in my heart I went ahead and left with Ben and Alex to the Ozarks.  Since Dori wasn't well, and Wynnie does not do well on road trips nor heat -- we left both of them in good hands and Chris oversaw all the logistics of meds, nurses, etc.  My best friend Stacy (sorority sister and close friend of mine since kindergarten) and my very dear close friend Jaymie (sorority sister, bridesmaid and the wise cracking jokester of the group) and their sweet children were exactly what the doctor ordered for the boys and I.  First I want to thank their husbands for letting their children and women run amuck with me -- but the laughs, the stories and the love were heaven sent.

Ben and Alex have been so understanding these past two weeks about being super quiet for Dori's naps and when the babies at times get sick I know they get nervous and try their best to help;  even if it's just hugging their baby brothers or just given Chris or I a hug.  So we all deserved this fun road trip to the Show Me state.  If you really want to know why they call it the Show Me state, you have to take a boat to party cove, but Ben and Alex will never have their sweet innocent minds tarnished with that for another 50 years I hope.

By the time I drove back home (8.5 hours) on Friday, Dori was already breathing well on his own on room air (no need for the O2 machine) and was maintaining his saturation levels perfectly fine.  He was talking more and was even rapping.  That made me so incredibly happy and relieved.

Ben and Alex were able to knock off alot of "firsts" at the lake.  They swam in the lake (only after obtaining double assurances that barracudas nor sharks inhabit the Ozarks), they rode on sea doo's, they dove off boating dock roofs, had a dance-off contest (moms vs kids, glad we old moms didn't pull our backs out in the process since we were doing dance moves from college before "Drop it like it's hot" even was a phrase), played sand volleyball, fended off a crazed bully who was pulling kids swim shorts down and making babies cry by taking their toys away (that poor boy had issues), they went to the worlds largest gift store, they visited Missouri's largest candy store, and they learned what the word "tidy" means.  What a week!

So blessed to have friends that
- can tell me "I can't believe you have a son as loud as you are!" and instead of being insulted, I am filled with pride
- that can bust out a rap song in sync with you --  based on just one word an innocent little girl says
- who can be as raunchy as any male truck driver in the entire Ozark region
- who won't judge you when you begin happy hour before noon on a Wednesday

Here are some fun pictures of our days at Stacy's lake house.  I'm glad the boys bonded so well with Jaymie and Stacy's children, truly made the trip even that much better !  The best part of the trip was when Alex asked me if Jaymie's and Stacy's children were their cousins.  In unison, Stacy and I answered yes : )
The kids were catching fish left and right

For a trio of old broads,we held our own with keeping up with the kids

This picture was taken from the sea-doo.  We won't go into detail about how scared I was to ride it, but Ben is the 2nd to the left, Alex is the 2nd from the right.  Fearless!!! 
Alex strapped in and ready to go.  Collin was an awesome captain

This water mat is hands down the best invention ever.

Our children get their weirdness from their mamas. 

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

Wednesday, June 5, 2013

One month later

It's been a little over a month since Wynnie has rejoined our home after his hospitalization and we could not be more thankful!  It took him almost exactly a month to be back to his normal social self.  He is babbling, smiling and laughing.  You can catch him razzing with his lips and he loves sticking things in his mouth again to chew.  He is still not quite 100% physically but we re-enrolled him into physical therapy and occupational therapy.  He regressed after being in a hospital bed so long in both movement and in feeding skills, so both of these home-based therapists have been helping him rebuild his strength.  It's inspiring to see him work hard ... like he is Rocky!!  : )  Yesterday he went back to school for the 1st time since February.  The teachers were all SO excited to hug and snuggle with him,  he even had teachers/therapists who came by the school on their day off to see him

Speaking of Rocky, Ben has turned into a muscle-craving athlete.  He is busy with baseball and basketball and is VERY much looking forward to the summer. About two months ago he became inquisitive about getting abs and it has progressed to a healthy preoccupation of his.  He is most definitely the most competitive person in this house.  The morning his school hosted Field Day competition, he disappeared into the garage for 10 minutes during breakfast. When he came back out of breath he told me he had been lifting Alex's bike to help make his muscles strong for field day.  Then when I showed up to see them compete, I saw Ben with his arms crossed eyeing down the 2nd grade Tug-a-War finals (knowing that his grade was up NEXT!).  He saw me and with a serious look on his face he just shook his head and said "I shoulda worn my cleats".

Alex has decided to step away from basketball and focus on football.  If you watch a pro or college football game with him, he'll make the calls before the refs do... he is pretty knowledgable about the rules.  For someone whose nicknamed Sweet Pea, you'd be surprised at how tough and focused he is when he suits up and hits the field.  He plays with heart and is encouraging to his teammates.  He also started to write a book, a fake autobiography about a teenage soldier in the American Revolution but that only lasted a day.  Maybe I'll get back to writing MY book this summer and he and I can write at the same time and motivate each other while we both type away at Starbucks!!  I truly have 6 dang chapters written and professionally edited so it's only a matter of time that I get back on track.

Dorian loves continue being an entertainer.  Over the past couple of months he has learned a couple of new dramatic faces and does this very drowsy eye thing when he pretends he is sleeping (but secretly he is looking at you).  He zips around the house on his scooter, and LOVES playing on our iPad.  His favorite app is Talking Tom and he carries on full blown conversations with Tom the cat.  The other day he played it for an hour and a half!!

Tomorrow is the last day of school for our 4 boys.  Ben and Alex are super excited to relax this summer and I am searching for fun things to do with them for the next few months.  The babies will go to school starting in July like they did last summer.  Since they "regress" when they are not in school, they qualify for extended year schooling through our school district.  I'm glad they go because it keeps them sharp, provides them more school based therapy, and it gives me private time with Ben and Alex.

Wynnie loves to giggle with us

Alex & the babies ran their 2nd 5K with Viktoria while I ran my 1st 10K!! It was to run for Moore, OK Tornado relief at Cooper Craig Ranch. 
This is Wynnie working hard lifting his noggin at his 1st post-hospitalization PT session. He looks so determined!  We are proud of him!!! 

To celebrate our 15th wedding anniversary last month, Chris surprised me with a trip to Vegas for the Mayweather fight.  Watching a championship boxing event in Vegas has been on my bucket list for the past 10 years, so I was SO happy and thankful to share that big milestone with him!  
Chris has been eating really healthy and has lost 20 pounds!  Now I'm not the only one eating roughage and he looks like one HOT TAMALE!!! I'm so proud of him!

Ben and Alex could raise their heads and stay in this position at 6 months of age.  At age 4.5, we are so excited to see Dori flex his muscles and maintain it for a good few seconds finally.  Way to go DoDo! He also likes to say his last name now.... it sounds so cute.

handsome fella 

Thursday, May 2, 2013

All back together again!

Since last Friday afternoon (April 26th) Wynnie joined us back home.  It was a long and very anxiety-filled 47 days, but his hospitalization is finally over.  Dorian was more concerned about eating than he was interacting with Wynnie when we brought him back home but he is very happy to have his twin brother back.

Ben and Alex give Wynnie kisses, and Ben continues asking if Wynnie is breathing ok.  Luna is back to giving Wynnie kisses too (or sniffing his diaper when nature calls).  As parents, Chris and I are so relieved to have all our children under the same roof and to bring a sense of normalcy back to our lives.

Wynnie has a big bucket FULL of new meds and needs an NG tube in his nose to help administer his medications that he gets throughout the day.  Due to his increased need of wearing a pulse oximeter, all his new meds and his NG tube, Wynnie qualified to receive his own home nursing.  Miss Margaret started working on Monday of this week and has been a wonderful help in keeping Wynnie's meds administration on time, doing his chest congestion therapy (CPT), his breathing treatments and feeding.

Viktoria is still on hiatus in Germany trying to get all her immigration things resolved so for now it's Chris and I working closely with the nurses to coordinate doctors appointments, sports practices, games and school stuff.  We're holding up pretty good so far but my coffee intake has skyrocketed.  Ha!

Chris is eating healthier and he and I are trying to get back to our svelte selves for the summer. Woop woop!!  So far he has lost 13 pounds in the past 1.5 weeks and I'm down 4 pounds.  It's nice not to have to cook 2 dinners anymore (one for him and the boys and one for me) because now we're all eating the same stuff.

This past week has been lots of snuggles and lots of family time because Wynnie's extended hospitalization was a  gentle reminder of how precious family time truly is.  We're grateful for Chris's parents for coming down to help us while the babies were hospitalized, my sister, Marcia, Viktoria, Claudette and our night nurses who helped us juggle it all doing those crazy 47 days.
Wynnie on his final day at the hospital.  

Dori enjoying the crisp spring air (and making his stinky face)

Wynnie enjoying quality mami time today

Tuesday, April 23, 2013

Next step -- HOME!!

Early last week Wynnie was moved out of the ICU and down to the regular respiratory floor at the hospital.  He has managed doing well without the use of any help with oxygen when he is wide awake and playing. But when he takes naps and when he sleeps for the evening he keeps his levels comfortably on 1/8 liter of oxygen.

The goal of him this week is to tolerate eating BY MOUTH and maintaining a soft tummy.  If he can handle eating/drinking on his own without creating more GI troubles, then the goal is for him to come home this upcoming weekend.  Today for the first time I fed him a 4 ounce bottle of milk.  Aw!  Just like old times ; )  It took him 45 minutes but he was able to successfully drink it all up and then have a bowel movement -- so both really good signs that we will continue to encourage him to do.

Ben and Alex are taking their state mandated STAAR today and tomorrow.  The were excited and wanted to be the first ones at school today.  I know the teachers have been working hard to prepare them and I added a fear factor telling them that if they don't do their best, field trip privileges will be taken away next year since the state of Texas only gives field trip to "smart" schools.  Alex kept on saying "I'm so nervous!" during breakfast.  Nothing like scaring your children before a big test!!!

Dori's new trick while he was riding his scooter yesterday was to SING, WAVE and have his eyes CLOSED while he was zipping around.  His physical therapist is working hard at teaching him how to stop when he comes to a wall or to a door.  Yesterday I think Dori was tired of all the "stop please Dori" -- he drove his scooter all the way to his bedroom and just sat there.  Actions speak louder than words.  Now we just have to work on the whole "distracted driving" stuff and he'll be fine.

Looking forward of meeting our family goals for the week 1) do well on our tests   2) focus on eating healthier  3) getting Wynnie to come home.  Accomplishing 3 out of 3 will feel SWEET!!!!
When I saw this painting it made me cry!  For Dori & Wynnie's 1st birthday party, we did it in a Pinocchio theme.  Pinocchio wanted to be a "real" boy just like everybody else, but he was ALREADY a perfectly loved boy by those that truly mattered.. it just took him a while to realize it.  Just like the babies -- to others they may seem imperfect but to us they are perfect. 

Dori is always talking, singing or cracking jokes. 

Wynnie having his 1st bottle since MARCH 11th this morning!!!

Sunday, April 14, 2013

RSV Free!

My favorite red wiffle ball in the whole wide world!

You think you got gas?  My belly could fuel a rocket!

Who let this crazy woman in here that won' 

Thinking about very important things

Smiling about very important things

Smiling under the mask

Gimme a "G"!!!

After over an entire month, Wynnie's RSV swab tests finally came back negative.  It's crazy to think that the stubborn virus kept strong for so long in him and left Dorian so quickly. Wynnie continues to do well breathing through the vaportherm nasal cannula and has had it weened down 5 levels since he started.  The only area of concern at this point is the amount of gas he has accumulated in his tummy due to all the air that has been blown down for the past week.  His tummy has grown so uncomfortably big that they have placed him on 3 meds to help him release his gas.  I keep pulling his finger but that trick isn't work.  ha ha

The goal is for Wynnie to be well enough to leave the ICU by Monday or Tuesday and then transfer him down to the regular respiratory inpatient room.  From there it might be another week until he is well enough to go home.  Looking forward to having everybody under one happy loud roof soon!

A very nice social worker here at Children's gave our family 4 tickets to the Mavs game this past Friday night.  Dorian stayed with Chris and his grandparents at home while B&A and I painted the town.  I had fun on my double date with my dashing young men!