Tuesday, November 29, 2011

Cavemom and Cavedad - our annual MPS Society Halloween Spooktacular was a blast!
Cuddle bugs on the couch

The boys on halloween
Dori wearing his birthday hat
Chris spending time with Dori while hospitalized

Today while I took Luna for a night walk to burn off some of her puppy energy, I was listening to an audio book of Joel Osteen. The chapter really got me thinking because it was about how we need to focus less on our misfortunes and more on our blessings. Sounds simple, sounds obvious to "focus on the positive and the negative won't seem so bad"... but when I focus on putting my mental energy on our blessings, it truly does put our challenges into a more balanced and manageable perspective.

Three years ago when we received the terminal diagnosis for the babies, it was like getting hit by a huge truck right between the eyes. Shock, anger, sadness -- you name it, we felt it. But once we got to know our lil guys, their fun personalities and the lessons they have taught us make me realize that their "illness" has given me a healthy sense of urgency to love on them and enjoy them as much as possible. In doing so, I have been able to truly soak in their love and see what God had intended me to see through their eyes. I don't focus on the painful inevitability, I enjoy the NOW with them.

When Ben and Alex are all frenzied their limitless energy (making messes in the backyard, staying up way past their bedtime building forts in their room, or sloppily rushing through homework to get to play) I sometimes have to take a deep breath and realize that it's ok. All that energy that runs through the house like a tornado is really just their passion for life and their loyal friendship for one another. All they want to do is play, play, and play! And how can I get mad at that? They will hopefully be each others' best friends for life, so I have to remind myself that they won't be kids forever and all their craziness is just good memories in the making... and I'm just blessed enough to have a front row seat to it all.

Work for me has had its peaks and valleys these past few months. Some months are super busy with business travel and conference calls, other months are very quiet and I start to get a little nervous thinking "hey! when's my next gig! Mama has bills to pay!" ... But in those quiet weeks of no gigs, I have been able to focus more on being a more responsive mom, I've been focusing more on fitness/healthy eating, and hopefully Chris would say I have taken more time to be a better partner. Just like in any relationship (whether as a parent, a spouse or a friend) -- relationships need to be cultivated, nurtured and never taken for granted. The busy phase of life that we're in has led us to fall into the traps of neglecting the life force of our relationships. Our bonds of family, spouses and parents is a sacred bond that needs to be fiercely protected and unfortunately it's taken some wake up calls for us to get refocused on what really matters.

This past month has been filled lots of ups and downs. Dorian had a 4-day hospital stay due to a respiratory virus. He was not wanting to eat, barely talking or smiling at the hospital and just not being his normal self. On his final day at the hospital, Chris disconnected Dori from all his IV's and monitors and called in the doctor to see him. He told the doctor "Dori is going home today" very confidently, not as a question but as a statement. The doctor examined Dori and said "Yep, he has no reason to still be here." So thankfully as soon as Dori came home, it was like a switch was turned on and he started singing again, talking nonstop, and he keeps calling out for a baby since the day he got discharged. I ask him "Who's the baby? Are you the baby?" and he nods NO every time. But then little over a week after his discharge, another little i-cell baby who was hospitalized with his exact same symptoms passed away. That news hit me really hard. It was hard balancing the three boys at home, and alternating 24 hour shifts at the hospital with Chris -- but the fact that he is home and healthy now puts that stressful week into perspective. The house just wasn't the same without him those 4 days.

Alex got viciously attacked by a tree (ha!) ... he had to get 4 staples in his head after a competitive game of football with Chris and Ben on Thanksgiving. He had his staples removed today. Ben and I took him and Alex went way drama-king on us and had to be held down by 3 adults in order to have his stitches removed. He screamed, kicked and hollered and you'd think we were trying to amputate his arm. I felt so bad for him and I started to nervously laugh which turned into uncontrolled hysterical laughing--- which only made the situation worse for Alex. Ben's eyes were wide open watching this whole scene unfold so he started to cry. By then the big nurse had finally removed the last stitch and she very dryly said to Alex "Getting stitches and staples is part of being a boy. You are too big for us to have had to hold you down. I don't think you should get any ice-cream treat tonight." Way to kick a dog when he's down lady! Ben just sat there teary eyed with his mouth wide open like "oh no she didn't!". So he helped Alex up and held his hand on the way out of the exam room. That sweet Ben is such a loyal protector...loyalty is definitely one of his strongest gifts... I just love him for that!

Anyways Joel Osteen has it right... the less time I focus on what's wrong, the more open my eyes are to enjoy all that is right. It's a mental trick that when a negative thought or feeling comes into my head, I gotta replace it with a better one. So far it's working through these busy months where we've been blessed with being in the good company of friends, family, birthday parties, our MPS Society fundraiser and family outings. Thank you God for all the blessings you have given us... and for giving us the clarity for the ones you keep giving us on a daily basis!

Tuesday, October 18, 2011

Dragon Mom

Dori having fun with Alex
Wynnie at pediatrician's office
For State Fair Day (no school) we spent the day watching movies and going to play laser tag and video games. The babies held in there for 2 whole hours!

For two weeks Viktoria is gone visiting her family in Germany and to meet her brand new baby nephew. Before she left for the airport I told her Ben and Alex would be wearing dirty underwear until she came back to resume her duties. Well it hasn't been as overwhelming as I thought it would be, but we sure do miss her tons. Dori was in his bed the other day calling out for her and laughing saying "Vika! Vika!" ... it was so cute.

A fellow i-cell mom shared this article this week from the New York Times (the link is below) about a woman who calls herself a Dragon Mom. She's the mom of a Tay-Sachs baby, another degenerative terminal genetic disorder. This is just a small glimpse of what we feel, what we aspire, and what we enjoy.

Sure with Ben and Alex we worry about their grades, their behavior and their character development as any normal parent would. We drill them to use their manners, we nag them to pick up their shoes, and we take them to Sunday School & Sacrament preparation at church every week with the hopes that it will turn them into loving, smart, generous, loyal and successful men.

But with Dorian and Wynn we focus on the here and now since that is all we have as a guarantee. Reading someone's else's perspective is refreshing and inspiring to know there is a small "fraternity" of parents of the terminally ill that all share one thing -- a rock solid and fiercely protective love for their child. I am proud to be a part of such a special fraternity ... no one ever "pledges" or wants to be in this selective group... you just end up here.

Please read this article, it warmed my heart: http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share

This month will be Dorian and Wynn's 3rd birthday so October is a month we reflect on how much they have blessed us and continue to bless us everyday.

Although we may not see Dorian and Wynn walk across a stage at Harvard or Yale to receive a diploma, we are just as proud to know that they will be starting their scholastic endeavors in January taking the Functional Life Skills program at THE SAME SCHOOL AS BEN AND ALEX!!!

The Lewisville school district designates each different elementary school to specialize in one main Special Ed program. Luckily for us, our school (just 8 houses away) offers the class that is geared toward the most developmentally delayed preschoolers. Since the babies will be 3, they officially qualify for LISD special ed pre-school. Ben and Alex are excited that the babies will go to their school with them. It makes me cry a happy-cry to know that for once all my boys will be roaming the halls and making a name for themselves on the same campus. I can't wait til January so the babies can socialize with kids and develop some new skills and routines 3x per week. I have no doubt that they will make lots of friends and melt lots of hearts in the process.

Monday, September 26, 2011

Three Cheers for Wynnie!!!

Amid all the business of work, school, sports and life, Wynnie was able to slip in a nomination for his courage and bravery in his fight against ML2. Please read the latest quarterly MPS Society Magazine and flip on over to page 30 to read all about Wynnie.
He is a very cool kiddo and I feel honored that God chose me to be his mami. We love you Wynnie!!


Thursday, September 1, 2011


Ben and Alex in St Louis
Luna Johnson
Dori in his stander
Wynnie in his standard

This summer we as a family have learned a lot about trust. Ben and Alex went with me to St. Louis for the National MPS Society Family Conference. What an eye opening and amazing time we had. Chris stayed home with the babies and had lots of fun here bonding with them. I think when I am out of town Chris is able to let his "hair" down and do things at his own groove, so that's nice that he is able to do it.

At the MPS conference, I had a sit down talk with the boys about Dorian and Wynn and their mortality. The conference had lots of sibling programs on the agenda so I didn't want some of the discussions to make them feel they were sucker punched. So while we ate dinner during our first night there, I told them we although we don't know how long Dorian and Wynn will live that we will do our best to be the best mom, dad and brothers Dorian and Wynn could ever had. We would do everything in our power to give them a happy life, no matter what.

Ben was shocked at this conversation because he just stared at me a lot throughout the course of the event. Alex started to cry and said "But I wanted them to grow to be old men with me!" I told them that miracles do happen, and we should never give up on the miracles God can create in the babies' favor. It was a hard subject to discuss, but for the rest of the conference the boys kept telling me how much they missed the babies and I could see the love they had in their eyes for the other kiddos that looked just like the babies there.

Chris and I have always told them that they can TRUST us for anything and everything. We are telling them that as long as we trust one another, we can get through anything that comes our way. Ever since we got back from the conference, they have been SO much more playful and affectionate with the babies. It warms my heart.

Chris gave in and bought the boys a dog.... we named her Luna (which means "moon" in Spanish). She is a Hungarian Vizsla and she is so cute and spunky. I pretend like it was Chris's idea and that I'm grumpy about it but I secretly love Luna so much! She's so adorable it's hard not to. The babies brace themselves when she comes around because she really likes to lick, jump and nibble a lot so they are learning how to turn their back towards her when she is coming. :)

I enjoyed my trip to St Louis and Silver Dollar City... it reminded me a lot of my childhood because I remember going to the same places with my parents on vacation. I hope the boys will always remember too. Although it would have been nice to have the babies at the conference with us, they would not have liked the 10 hour drive up there so it was best to keep them here.

I trust that those reading this will not have any mortality talks with Ben and Alex. Chris and I are really protective about what they hear and what messages they take away from a conversation -- so we are looking at ways to always be open and approachable for them, while at the same time being their main avenue for questions and concerns they may have.

The summer taught us a lot of lessons about trust:
1) trust is an assumption in its purist form... you only realize how important it is once it's actually lost. We hope that Ben and Alex will grow in trusting us, their feelings and trust in their faith.

2) Prayers are powerful. After our "mortality discussion dinner" in St Louis, Alex prayed that night that God would say "Dorian and Wynn will live to be 100, and that is how it shall be." He said it with such conviction that I have no doubt God heard that one directly himself.

3) Vigilance is so important. Whether it's being vigilant over a puppy around your babies, being vigilant over what Ben and Alex are watching on TV, or being vigilant about the world around you--- when you really love somebody or something, you will protect it with all your heart. If you don't fight to protect something, it means you really didn't care for it to begin with. So focus on what you truly love and put your time and faith into that with all your heart. Anything else is just distractions.

4) Never underestimate the power of fun. Swimming, sleepovers, movie matinees and dance parties all have curative value. REALLY they do!!

5) Waiting brings patience and anticipation. We waited all summer long for the babies to get their standers and they finally arrived yesterday! The babies can use these to put weight on their legs, become familiarized with the sensation of standing and see the world from a whole new angle. Dori loves it!! Wynnie has been sleeping both times he's been in it so we can't tell if he likes it or not. This is the first step to take in encouraging them to walk. Go babies go!!!

6) I really miss my mom and dad. There were so many times this summer where I would have done anything to call them, visit them or just vent with them. I know they hear my prayers but i truly appreciate all they did for me and the strong woman they made me that I am today.

7) I really miss Ben and Alex!! I went to the grocery store the day before school started and I saw some of Ben's favorite polish sausage. I grabbed it to place in my cart thinking it would be a good lunch idea for next week, then my eyes got all watery thinking "they'll be in second grade next week at lunch in the cafeteria, not home with me!" As crazy as they are all day here at home, those stinkers are awesome.

Tuesday, July 19, 2011

Public Enemy #1 and Toughness

Public Enemy Number 1 - deadly crafting snakes
Ben at football camp
Alex at football camp
The babies attentively learning during speech therapy
Ben getting his "worship on" at VBS last week

Behold these slithering creatures pictured above. Our latest nursing staff dismissal was due to these wooden snakes that I purchased at Hobby Lobby as art projects for the boys. Long story short, every time she'd come and we accidentally hadn't pick up the vicious snakes, she would threaten to leave. After the 3rd time of threatening to leave and shutting herself into our walk-in pantry and calling the agency telling them she would no longer stay here if the snakes were not put away, we did our final snake sweep.

I apologized to her and ushered her out of the pantry telling her that any snakes left out of the toy baskets are not intentionally left to frighten her. She did not accept my apology and she said that the boys intentionally leave the snakes out scare her. I explained that sometimes in a household with 4 kids, not all the toys always get put away neatly. She wouldn't budge. So we just asked her to leave and we haven't asked for her back. It's sad because she has been with us since day one, but nobody can walk into our home and accuse our boys of being malicious. I'll admit, Ben and Alex are all kinds of goofy & crazy, but they aren't mean spirited... so she just had to go.

On a lighter note, the boys are in day 2 of football camp. The first day, after 3 hours in the heat and being motivated by coaches that didn't want to coddle them, they came to my car crying and saying how "mean" the coaches were. After I explained that football camp at the high school isn't for playing patty cake or ring around the rosy, they went to camp on Day 2 with a better attitude. No tears this time and they felt proud of the drills they did and the compliments they got from the coaches from working hard. A little bit of tough talking didn't hurt anybody, and I'm glad they aren't letting the boys go soft out there on the football field. We can leave the snuggling and patty-cake for the privacy of our own home :).

Ben and Alex have taken a particular interest over the past week in playing with the babies (more than usual), and it just makes us so happy to watch their interaction. They play catapult with Dori (basically throwing things in his direction and watching him roll over and get it... not as violent as it sounds!). They also like to make Dori their parrot -- telling him things and listening him repeat it. They get a big kick out of that! And they love to make Wynnie laugh by running around him. The babies have a great time, Ben and Alex have a great time, and it's just really neat to see them bond.

I'm reading Tim Tebow's book "Through My Eyes" and its soooo good!!! If you don't know his story and his background, you gotta check it out. I got a neat tip from what his mom used to do with them. She would give them "character points" anytime he and his siblings would get complimented on their behavior by an adult or if they went above and beyond and exemplified solid character. I was so excited to get it started at our home! We announced to the boys that for every 10 Character Points they earn in their allowance jar, they get $10. So for the first evening, there was ALOT of fake character going on.... "Mami you are sooo nice! Mami you are so pretty! Papi, would you like for me to get you a coke from the fridge? You are the best papi I could ever have!!!" All those compliments and offers of fetching stuff got them zero character points -- it wasn't until they forgot about it the next day when Chris took the boys shopping that they began earning them by being polite, and a waitress the next day told me how polite the boys were. Cha ching!! So thank you Mrs Tebow... The idea has been a hit at our house and hopefully they are learning some good values in the process.

Sunday, July 10, 2011

Summer Snooping and the Mavs

Mavs locker room
Dori at the golf course
Wynnie at the golf course

As a surprise I took Ben, Alex and Viktoria to the Mavs arena at 7:45 AM on Saturday morning to tour the Mavs facilities in downtown. Our name was drawn from a Mavs watch party we all attended back in May so we had a tour of the practice facilities, the locker room, and the weight room. I think the boys' favorite part was that the players have a lounge area all decked out in black leather recliner "theater" style seats with a huge flat screen and all the video games a kid would ever want. All these months we've been telling them video games turn your brains into mush and the world champion Mavs have proven me wrong. Thanks. They had a real fun time yesterday morning and it was neat to see.

We are big snoops in our house. Alex likes to go through cabinets, drawers, closets and any nook or cranny where he thinks he might find something interesting. I don't know what he has in mind, but he is always snooping around going through things. The other day while I was cooking he was digging through drawers and he stopped and said "Mami, I like being nosey!" and then kept on digging. I said "You know Alex, when I was your age, I used to go through all my parents drawers too." I probably should not have admitted that in retrospect! He just smiled.

In the spirit of snooping, it was 2 hours past Ben and Alex's bedtime, and I could hear them laughing and screaming and occasionally running upstairs. So I sneaked into their bathroom next to their room and just sat there and listened. Alex had his journal out and was interviewing Ben. It went something like this:

"Ben, what's your catch phrase?"
Ben responds "Skate 3!" (the name of his favorite video game)
Alex says "No, it can't be that! A catch phrase is like your favorite thing to say. Like Bugs Bunny's catch phrase is 'What's up Doc'.... get it?"
"Ooh... my favorite catch phrase is 'DUUUDE!' then... what's your's?"
Alex responds "I guess mine is 'What's up Doc' too."
I know that as this is read, it's probably not funny but while I was crouched over in the bathroom listening to this and hearing Alex scribble Ben's response in his journal, it was adorably hilarious to me.

And not to be left behind the snooping department, the babies are right with them. Wynnie has been waking up and not letting the nurses have much of a break in the evenings... all he wants to do is drink milk and chat for as long as he can get away with it, usually for 2-3 hours at times. He just loves the attention. Dorian has also been nocturnal lately. One night he just played and sang and ate starting at 1:00 AM and didn't skip a beat to take a nap until 10:00 AM the following morning after physical therapy. He's also been REALLY active in the rolling around after people. His favorite prank is to roll to the foyer and knock down all the forts and defense soldiers that Ben and Alex have built. If Ben moves him back into the family room, Dori screams at him and scoots and rolls his way right back over and knocks their stuff down right over again. I think Dori loves all the commotion it causes (1) Ben and Alex scream, (2) he hears all the blocks and stuff crash to the wooden floor and (3) he thinks "dude, I did that!". Isn't every little brother supposed to bug his older brother? He takes the job very seriously.

This summer Ben has really endeared himself to Wynnie. Our friends came to visit us last week and Ben wanted them to meet Wynnie, he kept saying "Come over and meet him, he is really really cute! He's really funny!" I think Ben is sweet on Wynnie because Ben can do all his Jerry Lewis antics to him and Wynnie just laughs and laughs at anything Ben does. Who doesn't love an audience?

Chris was out of town all weekend, so I took the older boys to the Japanese steakhouse last night for dinner. When our cook came out, Ben sat up on his knees on his chair and says like a rapper "Let's get this party started!!!" That's pretty much been the theme for us this summer... have fun and get the party started with friends, play dates, camps and everyday celebrations. So far we've had a great summer and I can't believe it's nearly 1/2 over already. ;(

Tuesday, July 5, 2011

Happy Independence Day!

Wynnie with his favorite toy
Alex in front of fireworks
Ben striking a Lady Liberty pose
Ben getting a ball at the Rangers game!
Alex and I

Dori giving his Papi lots of kisses Friday at the restaurant

We hope everyone had a restful and fun 4th of July weekend! We had alot of fun with the boys and the babies this weekend, shared in the company of great friends. Dori spent the weekend very affectionate-- kissing and being kissed. Wynnie was in a playful mood all weekend so he had fun playing with his older brothers and the kids that came over to play.

Many thanks to the Devoe family who gave us their tickets to the July 4th Rangers baseball game! Ben got a ball from one of the Orioles players, and then Alex got a ball that Chris caught for him. They were so excited! Alex knew that the Orioles team colors would have black in it because as he stated, "Orioles sounds like Oreos and Oreos are black."

Then after the game we watched an awesome fireworks show from the parking lot. As we drove off the boys rolled down their windows and were telling people "Happy 4th of July!" "Happy Birthday America!" It was cute. Viktoria stayed home with the babies. She and Catherine, the night nurse, took the babies outside to watch our neighborhood fireworks show. Dori didn't like it one bit, and Wynnie didn't care for the heat and humidity so the girls brought them back inside and just watched the fireworks from inside the house. I don't blame them! It was still 95 degrees at 8:00 PM!

As we spent time swimming and playing in the backyard on Saturday, Alex says with a big smile on his face "This is the life!!" How true! Our time spent with friends and neighbors was just what we all needed...a fun and lazy weekend for all. We are very thankful for the peace and happiness we shared with each other this weekend.

Sunday, June 26, 2011

June 26th

Wynnie enjoying bath time
Dori hanging out with us in the kitchen
Ben riding his bike for the 1st time like a pro!
Alex fully concentrating on his bike without training wheels. yay!

We're only into the 3rd week of summer but the boys are developing a good routine to keep themselves busy throughout the day. When it's time for the babies to get therapy, they go upstairs to play video games or go into my room to watch cartoons (if not they'll stand over the therapist shoulders and be like protective body guards anytime they hear the babies cry) so that the therapist can do their jobs without having to answer to Ben and Alex. :)

For Father's Day the boys made him colorful cards and we all stayed out of his way while Chris was busy all day with cleaning out his closets and organizing things. I told him he is supposed to be lazy on Fathers Day (since I don't lift a finger on Mother's Day!), but he had the urge to purge so we let him go after it. It was a very low key day for him here at home. Then this weekend we celebrated his birthday. Viktoria made him a surprise German chocolate cake. Unfortunately the cake deflated so it really looked like the Grand Canyon but it tasted so scrumptious it didn't matter what it looked like since we all covered our pieces in ice cream. Ha!! Then Saturday night we went out for drinks in downtown then up to Allen to a Brazilian steakhouse his friend owns. It was a weekend finished up with playing around in the pool with the boys last night.

Ben and Alex are staying busy with a 2nd grade curriculum book. Chris worked out the lesson plans so we sit during the day and do the daily lessons. Ben's lesson on Friday included to compose a "poem" about someone. He chose to do it about Chris. He was hard at work and wouldn't show me anything til he was finished. Half way through the poem composition, Ben looks up and says "Mami, what's a word that rhymes with bald?"

For Father's Day I had the boys make a magic time machine card. On one side of the card they drew what their favorite thing to do with Chris is (in the "present"). Then on the other side they drew what their favorite thing will be to do with him in the "future". Alex drew shopping with him in the present, and playing poker with him in the future. Ben drew playing basketball with him in the present, and playing with his kids & Chris in the future.

Today after Chris told the boys he was going to teach them how to ride a bike, Alex said "Hold on, let me get a first aid kit put together!" To our grand surprise, once the training wheels were taken off, both boys zipped on their bikes as if they had ridden for years. It was nuts! No need for bandaids. NICE!

Dorian is working on making the "SH" sound with his speech therapist. He can't work it out with his mouth, so he just blows out of his nose when he is prompted to do it. It's so cute. She loves it when he does it. Wynn is trying his best to mimick facial expressions and sounds. He loves to roll up to Dorian and try to hold his hand or touch his face but Dori gives him a swift kick or a loud yell and Wynn knows to back off. It's hard being such a snuggle bug if your bro doesn't want to snuggle back!! We need to send Dorian to some sensitivity training. :)

This week the babies have both been party boys in the middle of the night. They get the night nurse to feed them then play with them for at least an hour, or FOUR. They keep the babies happy so we don't hear any fussing or crying to actually wake US up. Twice this week Dori partied til 4 or 5 AM. Hopefully this is just a phase, but at least while they are awake with the nurse they are happy just talking and playing with toys. Maybe they are practicing for college all-nighters (?).

Thursday, June 16, 2011

Mavs Maniac

Jason the Jet Terry & Dirk
Dirk doing the Dirky
Tyson Chandler
The awesome parade crowd!
My two cute parade dates!

I'm happy to report that in our household we have come down with a serious outbreak --- of mavs fever!

What a fun past week it has been... staying up late with the boys to watch the games, trying not to cheer too loud because loud cheers scare Dori, being proud of Wynnie staying up real late with us to join in on the chanting, doing victory dances for our night nurses (who I have no doubt think we are totally nuts), and just sharing the excitement of the mavs NBA championship with Ben and Alex. It's really neat to see their excitement. Chris says I'm a "superfan" and Ben is not far behind from me, he likes to watch the games over and over again.

Today we woke up at 5:15 AM and took the train to downtown... sunscreen, DS's, sunglasses and cooler in hand (packed with sandwiches and gatorades). We left the babies at home with Viktoria because I thought the crowds and the heat would be too much for them... that was the best call I made all day since there were over 200,000 fans and over 100 degree heat.

Ben LOVED the train ride and was so pumped to see houses and businesses all dark as we choo-choo'd all the way to Victory Plaza, he kept clapping and saying what a good day it was. Alex within 5 minutes of boarding the train Alex said "This is my second most important dream come true!" I was so excited that I didn't even think of asking him what his FIRST most important dream is. I just gave him a big hug. Since we got there 4 hours before the parade started, we got a great area to watch the parade from... here are the pictures. What a fun time, I'm so glad I was able to share this experience with the boys. CHris wasn't able to take off from work to join us but we kept him informed through phone calls and texts.

Thanks mavs for giving our family so many neat memories this year!! As I screamed to Dirk, Terry and Kidd as their float went by "WE LOVE YOU GUYS!!!!"

Sunday, June 5, 2011

Let's go Mavs!!

Game 3... tonight here in town... we've got Mavs fever, and only a NBA championship can cure it!! I made the babies' mavs shirts last night (iron on letters) since no stores carry Mavs gear so small. The boys are really excited... Let's go Mavs!

Thursday, June 2, 2011

New bath chair & pool time

The babies just LOVED the water

Dori's new bath chair... what a handsome fello!

I couldn't wait to post this and share with you all... Dori and Wynnie apparently have a new passion -- swimming! Well, more like hanging out in the water with cute German girls. What guy doesn't?

Here is a picture of them with Viktoria and her sister, Olga. Sadly Olga is leaving tomorrow after visiting for 6 weeks. We know Viktoria will miss her big sister, they've had alot of fun these past couple of months.

Dori also got his new bath chair and we tried it out today. He cried the whole time, not liking it one bit... but I was able to distract him long enough to get a picture of him without him screaming. Way to go Dori!

For more updates on their PT and Speech therapy, please view the blog post from earlier today.

Wednesday, June 1, 2011

June 2nd

Dori smiling at dinner table
Wynn unimpressed by the baby dinosaur he was petting on Monday
Alex in field day
Ben with the look of a crazy man at tug-a-war (he gets that from Chris!)

School is over on June 9th so just a few more days and *freedom*... so that means lots of activities to plan and fun play dates to book so the boys have a fun and eventful summer. That also means Dorian and Wynn will feel like Atilla the Hun has invaded their private quiet days until school starts up again! ha ha ha!!

Just wanted to post a couple of pictures of the boys and babies lately... I tried many times to post new videos to this blog entry but for some reason it's not working. I'll post it once I get it figured out. It was some cute ones of the babies laughing, talking to me and eating my iPhone (otter box) case.

Football has had us really busy (the season ended last Saturday, they got 2nd place in the league). Now we're in full basketball mode. Chris started two select basketball teams and is coaching those. Our team name is "Big Red". No surprise there, right?

Wynnie has had a fever the past couple of days and throwing up, but I'm taking him to the doctor to see what's going on. Probably an ear infection I assume, but I don't know what his vomiting is about.

Dori has been improving by leaps and bounds in PT. With the help of his bobby pillow around his hips, he is able to sit up for a total of 7 minutes!!! His PT is really proud of him, as are we. He is also stealing the show at speech therapy. His speech therapist Hope has become a stay at home mom so we miss her dearly. :( But his new speech therapist Lauren is great and the babies have really blossomed with her. Dori is mimicking alot of her words during therapy and Wynnie is trying his best too. He recently discovered his tongue so he is more preoccupied with folding it over and sticking it out than actually saying words... but that's ok. It's a start!

Their old OT left the company so they have a new OT. The babies are taking a little while to get used to her but she does all sorts of fun things (play with shaving cream, color with markers) so they are beginning to warm up to her because of her new tricks and toys.

Wynnie is still everyone's friend... anyone willing to hold and cuddle him is alright in his book. As for Dori, he is developing his "stranger anxiety" like a typical 2 year old normally does. If he doesn't know you very well and you try to touch him, he'll let you know he wants you to step away... far away, fast. Lauren told us that is a good sign of his mental development since a "normal" 2 year old would also begin to exhibit that same aversion to strangers as well. So please don't take offense... it's just Dori being a normal 2 year old.

Ben and Alex had field day at school last week... it was a hoot! The babies enjoyed it for about an hour then they started getting hot and fussy (they get hot and sweaty way faster than normal since they are both on heart meds and that is a side effect). But before we left I was able to get some good pics of the boys in action. I was proud of them! The boys were very busy the last two weeks keeping watch of a mama bird that made her nest on our garage door opener. They rigged a step ladder so they could climb up and see the eggs and babies every day.

Chris made an observation last week that really struck me. This past year in Dallas we have hosted the World Series, the Super Bowl and now the NBA finals! Even though we haven't purchased actual tickets to go to any of those big time games, we've enjoyed the festivities around the city with Ben and Alex and it's been really neat to get caught up in all the excitement. Not many kids can say they've had fun at all those events, so it's a blessing to make those memories with them and our friends down here.

We hope you start to look at your calendars and think of when you might come down to visit us. The pool is ready, the lounge chairs are waiting and I'm sure we can whip up a nice cold beverage for you upon your arrival. Just to tempt you I'm putting picture of our front door and back yard on here to get your road trip juices flowing. Come on down!

Oh ... and one more thing... LET'S GO MAVS!!!!!

Monday, April 18, 2011

April 2011-Almost Easter

Wynnie doesn't know a camera he hasn't liked!
Dori all smiles after breakfast today
Alex after school today at the neighborhood shops

Ben happy after eating a donut after school at the shops

It's less than a week away from Easter and we are looking forward to spending some downtime together in the house this upcoming weekend. The babies had a follow-up appointment with their cardiologist and the ENT. Thankfully, there is nothing to report! Their hearts are in the same condition they were 7 months ago, so for us that is great news. Same with their ENT, he didn't see anything different than last time with the little he can decipher from their extremely narrow ear canals. (no news is always good news in Dori and Wynnie's case!)

The ISMRD, an internationally focused nonprofit that advocates for families and patients affected Glycoprotein Storage Diseases asked us to write an article about Dorian and Wynn's condition and how we manage the juggle for their upcoming newsletter. The article ended up focusing on the lessons the babies have taught us. Take a read if you'd like, I've copied/pasted it into the body of this entry:
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“How old are your babies?”

“Oh wow, they are so small!”

Those are things we hear a lot around here. I’m the proud mom of four energy filled boys. Ben and Alex, who our 7 year old twins that play every sport under the sun; and Dorian and Wynn, our 2.5 year old twin boys that were born with Mucolipidosis II and have taught us so much in the 2.5 years they have been here.

After parenting two perfectly healthy boys, when my husband Chris and I found out we were expecting another set of twins we were beyond surprised. We thought “will another set of twins stretch our time and patience? Will we be able to provide the same amount of loving time with the older boys with two new babies needing our care and attention?”

We went full steam ahead with this new adventure. The older boys took much pride in helping set up the baby room, putting the old cribs together, and picking out names. They took a lot of pride in knowing that being an older brother came with a lot of responsibilities, and they were excited for the big day of their baby brothers’ birth.

After six weeks in the NICU, the doctors diagnosed the babies with ML2. It was devastating to hear that Dorian and Wynn’s life span would be very limited. That they would only live to maybe 5, maybe 6 years old. How do you tell a parent that their baby comes with an expiration date? Although the news has hit us very hard, we are blessed to have a wonderful team of caring doctors, a supportive family, and an army of loving friends.

I am happy to say that Ben and Alex have taken on the roles of protective big brothers to heart. Alex is always showering Dorian and Wynn with all kinds of love and affection. Ben is the watch dog of the family. If he thinks a nurse or a therapist isn’t doing things right, he’ll be the first to speak up and protect his baby brothers in an instant. It melts our hearts when we watch how much they love their brothers. We have intentionally not told Ben and Alex that the babies have a terminal illness, because we want them to focus on having fun with them today, not worrying about what may/may not happen tomorrow.

Dorian and Wynn are only 2.5 years old, but they teach us important life lessons each and every day. Here is just a few of the things they have taught us already:

1. Don’t take a single day for granted. Even if it seems like the day has shaped up to be a “bad” one, there is always room to find blessings in each day and time to turn it into a “Good Day!” as Dori loves to say.

2. God’s grace and love for us is shown in many ways – a hug from a neighbor, a smile on a baby, a good report from a doctor, a new flower blooming in the garden. We have to keep our hearts open to actually see and appreciate these little gifts because it’s the good feelings that comes with those gifts that will be engraved in our hearts forever.

3. Big dreams and little dreams are equally powerful. Before the babies were born we had big dreams for them. Maybe they’d be life-saving doctors, maybe they’d be star athletes, maybe they would be the first twins to be President and Vice President! Who knows?! But we learned that you don’t throw away your dreams for your child just because they were born with extreme special needs. You learn to alter your dreams to suit them, and you celebrate each and every little milestone along the way.

4. Don’t focus on the negatives. You can’t change what has already happened, but you can always change the attitude you use to overcome what has happened. Whether you realize it or not, we are all surrounded by negativity. Negative reports on the news, negative family members, negative co-workers can all form a haze of negativity around you. What you choose to internalize is your choice. Negativity is like food – the more junk food you eat the more it deteriorates your body. Negativity deteriorates the soul, and in our home we choose to keep negativity at the door.

5. Families are amazingly powerful. Dorian and Wynn have helped us create a beautiful family of friends, doctors, a team of therapists (PT, OT, Speech, Auditory), night nurses, sitters, neighbors, friends and loved ones. Family are the people you choose to let into your life, the people you choose to confide in, the people you would do anything for. Dorian and Wynn have strengthened our family beyond anything I could have ever imagined. We are so blessed.

God did not give us more than we can handle. We feel so fortunate that God chose us to be Dorian and Wynn’s mommy and daddy. Those little stinkers will continue teaching us the power of love, patience, faith and family. I only hope they can help change your perspective too. Many hugs and blessings from our family to yours.

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Saturday, April 2, 2011

No Foolin, it's April Already!

Ben with his masterpiece, "Ben Golden Adventure"
Alex with his masterpiece, "The Amazing Case"
Wynnie enjoying his 1st football game of the season
Proof of Dori's bullying ways!

This was "test" week for the babies. They had their OT, PT and Speech evaluation reviews. They have to do reviews every 6 months to prove to insurance that the babies are progressing enough and needing still therapy enough to justify therapy coverage. Plus, it's important for us as a team (we as parents and the therapists) to reset our goals for what milestones we want them to achieve for the next round of reviews.

For speech, the Dori has proven to be teachers pet! He has the verbal and communication understanding of a 1-1.5 year old. Go Dori! The therapist did note that when he wants to responds but doesn't know what to say, he falls back to his favorite word of "Hi". That's ok, I say "uh" to fill in the silence sometimes so that is fine. :)

Wynnie is catching up now that he more consistently wears his hearing aids. He is trying really hard to physically imitate when people are gesturing and talking around him and his aggressive at trying to get your attention if he thinks your not focusing on him. Although his verbal isn't as advanced as Dori, he is still a man with a message. He ranks around the communication skill of a 6 month old. Better than last time so we're happy.

For occupational therapy (hands and upper body stuff) Dori is around a 9 month old. We are challenging him more with grabbing his own toys and reaching for what he wants. Wynnie is around a 6 month old.

For physical therapy (lower body and sitting), the categories are graded pretty "hard", I asked them if they could score the babies on the curve. NOPE! Dori can sit independently, but it doesn't count because he can only do it for a minute or two and with a boppy around him, so he scored a zero on sitting. But even though the graded them pretty tough, Dori's leg and back stability graded him around a 5-6 month old, and Wynnie was around a 4 month old. We need to get him to have better head control before he can move onto more complicated body functionality. He gets his big nugget from Ben :)

The babies saw their pulmonologist and he was so happy to see how good the babies are and that they are breathing so well and have had a relatively perfect winter (respiratory wise). Yay!!
We are so proud of Ben and Alex. They had a author's reception for the books they wrote. Ben dedicated his book to his family, Alex dedicated his book to his class. Both boys got on stage to say that so we practiced and practiced. They spoke so confidently!!! Ben even crossed his arms like he was rappin it. So cute! Professional speakers of the future??

Alex is a flag grabbin fool at football... he is a BEAST!! Ben is trying to find his groove on the line and as the season progresses we know he'll be back to being a major force on that line. They love their team and so far we are 1-1. Go Bears!

Our hearts are very heavy for lil Ethan from Minnesota. He was another i-cell baby who was hospitalized a few days ago for RSV. He was having a very hard time breathing. His mommy whispered in his ear that he could go and within the hour he passed away in his parents arms this morning. The news hit me like a truck... our prayers and love are with his parents and extended family. I'm so sad to know that people have to go through this, I hope they have a good support system to help them through the days ahead. In the meantime, we'll keep spoiling our babies rotten, and taking them everywhere we can so they can enjoy everything life has to offer.

Check out this video... it's Ben doing his nightly ball handling drills with Chris. Ben didn't know I was recording him from my laptop in my office. This little kid is so determined, his gumption always inspires me!