Wynnie's Heavenly Anniversary

Christopher Wynn Johnson 

Oct. 27, 2008- Dec. 2, 2014

Today we celebrate Wynnie's life by honoring today's special significance.  A year ago today around 11pm Wynnie bravely earned his angel wings.  There's so much I remember of that day.

I remember waking up with a weird feeling about him so I had his nurse take a back seat all day and assist me from the background while I intentionally held him all day long.

I remember showing him pictures of "Heaven is For Real" Jesus and showing him pictures of my parents throughout the day (yes I still think the Heaven is for Real Jesus painting looks exactly like Kenny Loggins circa 1980).  I wanted Wynnie to know their faces really well so that he'd recognize them as soon as he entered his new home whenever that would be.

I remember Chris having a serious talk with Ben and Alex about how when they wake up Wynnie may possibly no longer be with us.  So that afternoon they loved on him, talked to him and gave him many kisses.  I remember Ben gave his Froggy to Wynnie to keep him company and take care of Wynnie.

I remember Marcia being here with us all afternoon and evening and helping us stay calm and love on Wynnie; and feeling so thankful for her being in our lives.

I remember texting jokes to friends all day to keep myself distracted with funny stuff instead of crying because why would Wynnie want to be with someone who was a sourpuss all day? A happy mom is way more fun.

I remember Luna snuggling next to Wynnie very protectively while he napped in the family room.

I remember feeling so immensely blessed to have had Melinda, Wynnie's hospice nurse, come to our home within minutes of his passing to help us do everything that needed to be done for us so that we could focus on Wynnie instead of all the administrative stuff.

When Wynnie passed I remember never feeling as close to Chris as ever.  I had never seen him as emotional as I did that evening.  I remember Chris took time to pick out Wynnie's final cute outfit after we bathed him and made him look handsome as ever one last time.  I remember how sad we felt when the funeral home came to take Wynnie away.

Once they took him away I remember feeling so weird and empty and neither of us was sleepy so we both made ourselves a stiff drink and watched ESPN for a long time until we got sleepy.

Even though I remember every little detail down to what I was wearing that day (I've never worn that shirt since), what I remember most is the beautiful life and spirit that God entrusted us to enjoy for six wonderful years.  So as I write this, this is the only time I'll boo hoo and cry today because for the rest of the day I will focus to celebrate Wynnie's life.  Chris and I will have a stiff drink at dinner tonight and we'll reminisce about all the great things that made Wynnie such an earth angel.

I hope people remember how he was way before he started to get really sick and i-cell started to take a toll on him.  He was funny!  He was loud!  He babbled and moved around the house more than Dori did back in his prime.  He made the funniest noises with his mouth!  Sometimes he sounded like a cat!  I was obsessed his pooping... it was a like a side show! He was the only Johnson son that would let anyone snuggle him for hours and wouldn't wiggle his way out, he would just let you love on him as much as you needed to.

He. Was. Awesome.

We miss you little prince!  Keep watching over us and keep having a blast in heaven.  We can't wait to see you again someday!  

What happens during Thanksgiving, stays in Thanksgiving!

What a fun and busy last couple of weeks our family has had!  One week before Thursday of Thanksgiving Chris spontaneously planned a trip for us to go to Vegas (for the Canelo/Cotto fight).  I told him I wouldn't go without Ben and Alex.  Dori of course was going to be fully covered with nurses and Marcia so I didn't feel comfortable leaving them with neighbors while we jetted off to Vegas with less than 12 hours notice.  So he altered the trip to include a day in LA and we took a flight in less than 1/2 a day from when the plan was concocted.

The boys had never been to California and had a blast spending the day at Universal Studios.  It brought back so many memories from when I went there with my parents. Then the next morning we beat the traffic from LA to Vegas and had brunch at our favorite brunch place- Mon Ami Gabi in Paris on the strip.  The boys loved the food and were amazed as we gave them a tour down the strip to see all the hotels.  That night they went hog wild at the kids club at Green Valley Ranch (where we always stay, off the strip) while Chris and I went to Mandalay Bay for the fight.  The fight wasn't as memorable as other fights but we had a complete blast with all the other spectators and I was able to speak my Spanish that I rarely get to use around this house between all the Puerto Rican fans and the Mexican fans.

The next day we spent the entire day with the boys watching NFL, going to downtown Vegas for brunch where they got to see an asian male model photo at the pool (yes, random I know), they almost were brave enough to go zip lining across downtown but at the last minute chickened out (I don't blame them!).  That night we went to Lavo for dinner -- YUM (Alex ate nonstop -- his food plus 1/2 of Ben's full sized flat bread pizza).  Before heading to the strip for the evening we warned the boys that they would see alot of crazy outfits that might look like costumes, and also see/hear lots of inebriated people.  As luck would have it, by 5:10 pm during dinner the boys got to see first hand what a "side walker" is --- that's the person who is so intoxicated they can't walk straight ahead, they walk side to side.  We also went to the Michael Jackson Cirque show -- it was fantastic!  I cried twice. They were excited to tell all their friends about the side walkers as soon as we came back home.

Then within a couple of days we hosted Friendsgiving with our neighbors and dear friends the Mazurs.  We all ate, watched lots of football and told lots of stories.  Dori had a blast being the center of attention in between his naps that day.  He ate so much mashed potatoes and guacamole that I thought his tummy was gonna burst.  He officially cannot fit into 1/2 the brand new clothes he received for his birthday at the end of October.  Dori's motto is a cross between "Go big or go home" and "if you cooked it I might as well eat it".  It was good to see how happy and chatty he was all day long with everyone.

This morning Ben and Alex left for the rest of the week to go to camp with all the rest of their 6th grade class.  I begged and reminded them repeatedly to take a shower DAILY and to use deodorant DAILY while they are there. I'm hoping they do.  When Chris dropped them off this morning he said all the 6th graders looks pumped and ready to go!  How fun!  They've been gone for just a little over 12 hours and we are missing them terribly, but it's neat to see them have so much fun with all their new school mates.

Here the boys were taking in all the pre-fight hoopla at the Mandalay and fake fighting

Here Dori is moving in on Ben while he watches cartoons.  

This past weekend we were all sitting in our home bar area watching football while Dori was taking a nap on his bipap vent machine.  It was late afternoon and normally he sleeps for a couple of hours before he wakes up for dinner and bath time.  We had the TV on pretty loud watching games and the boys were relaxed playing video games and Ben excused himself to use the restroom.  When he came back through the kitchen to use the bathroom (next to Dori's room) he screamed "Dori's machines are going off and he's down to 28!!!!".  Chris and I ran into Dori's room and realized Dori had pulled his tubing off his breathing mask so he was basically not getting any oxygen support.  We quickly reconnected his tubing to his face mask and within probably 15 seconds he had dropped down all the way to 18 then crept back up into the 90's.  I felt HORRIBLE.  We turned around and hugged Ben and thanked him for catching it for us (we didn't want to act panicked in front of him) and Ben kept on saying "I'm glad God made me feel like I had to go to the bathroom because if I hadn't I wouldn't have been able to save Dori's life! Thank you GOD!!!"  He is absolutely right!  As much as we were just having a quiet evening at home just the 5 of us relaxing, we couldn't hear any of his machine alarms from the bar/tv room.  Dori's room and the bar are less than 12 paces and I feel so bad that he was struggling and we didn't hear a single beep, a single alarm -- nothing.  So now unless there is nurse on duty, I not going to venture past the kitchen.  Poor Dori!  So thankful for Ben!  So glad instead of it being a scary thing, it turned into a learning moment for us all.  Damn football. I don't even remember what game it was.  Most definitely not worth it.  So we have ALOT to be thankful for as we head into December and the Christmas holidays.  I'm so lucky to be the mami to this fun group of boys and the wife to this crazy guy!  Look what I found while cleaning out Dori's closet?!   Can you guess who's who??? ha ha ha 

My mom had to cut my hair short because I cried too much when she or my dad would detangle it.  I looked like a boy for YEARS. 

Behold... Chris.... with HAIR!!!!! Once upon a time. 

Post Birthday fun

Dorian and the boys have had a fun past few days with their friends.  I'm making a list so I don't miss the big points:

1)  Ben and Alex went trick-or-treating with their friends.  I'm glad they don't think they are too old to join in on the fun.  We had fun with our neighbors at the I-don't-know-how-many-years annual bonfire.  We couldn't ask for more fun friends and neighbors.  Is it just me or does it seem that adults enjoy Halloween WAY more than our parents did when we grew up?  It's definitely one of my most favorite holidays because you get together with people you enjoy being with, without any added pressure or stress.  Why? For fun just plain fun.

Dori had a blast at his birthday party!  BEE! Everything was honey bee theme.  I found an Etsy shop that custom made baby clothes so we had a bow-tie shirt made in his party color with DORIAN 7 on it.  When they lady saw the age and the small size she sent me a message thinking I had submitted a typo in the order form.  When I explained to her she happily made him this amazing little shirt and her child even handmade a birthday card for Dori wishing him a happy birthday. He looked so handsome!  

2)  Ben's select basketball team has been doing very well and remains undefeated in their division.  Today they won their tournament and Ben very proudly wore his medal to dinner and was telling everyone about how got kicked right in the jewels and was down for quite a while.  From my point of view it was very painful to watch, and on top of that Ben was called for a foul on the play.

3)  Alex is really enjoying his elective class at school.  He signed up for cooking and I'm really glad there's a few other boys in the class too.  The bonus of all of it is that he brings home the recipes and he promised to make bean dip for tomorrow. YUM!

4)  Dori continues to do well.  Since it's officially cold/flu season this is the time of year we are very antsy about people washing their hands and not coughing/sneezing around him.  Now that it's cooler outside I also want him to go on walks in the stroller more since he LOVES leaving the house and going out and about.  The kicker is that he can't be out when the pollen/allergens are too bad because then he gets congested really bad and that can sometimes snowball into more serious issues. It's always a delicate balancing act with him.

5)  Yesterday Dori had a new day-shift nurse start.  He is a guy.  Dori has NEVER had a male home health nurse before so he is enjoying the novelty of it all.  He called him grandpa all day yesterday so we were trying to teach him his real name, but he still has called him grandpa all day today too.   His nurse is YOUNG... maybe in his 20's I figure so there's no way he should be thinking "grandpa" so it's pretty funny.  Better for him to call him "grandpa" than "papi" or "daddy". HA HA!!

6)  The saga of firing nurses is always an ongoing issue but thankfully the agency has been able to quickly bring people through that we've been able to screen and weed out so we haven't gone too many days with nobody covering any shifts.  When Chris comes home from work on days we haven't had any coverage he knows to tread lightly, especially if I'm still in the same jammies and slippers from 6:50 AM when he left.  I've still been able to keep working and I'm thankful for my clients and speaker bureaus that keep my pipeline alive between my family responsibilities.  I have a huge admiration for mothers that work full time and manage to keep their household running smoothly because I can't imagine working 40+ hours per week AND managing all the things with Chris and the boys at home.

7)  The boys are doing a great job in learning their Spanish modules online for school, but I strongly regret stopping speaking to them in Spanish when they were two years old.  I should have stuck with it.  Hind sight is always 20/20, I should have known better.  It makes me cringe when they don't know stuff because it could be an easy A for them if I would have stayed the course with them.  Oh well!

8)  How about those ROYALS?!?!?!.  The Royals did a phenomenal job and it brought me back so many wonderful memories from watching the Royals win the World Series in 1985 when I watched it with my sister and parents in KC.  I cried before the start of the last game just thinking of it.  Reminded me of how much I miss my parents.  I was very blessed to have been raised in such a wonderful town!  I know my parents were celebrating in Heaven!

9)  I've been walking around like a harlot who can't walk in heels for months.  It has nothing to do with high heels.  I finally went to my orthopedic doctor and after X-rays to my back, hip and neck it shows that basically my bones/joints are crap.  I fully expected my back to continue to deteriorate from the injuries and hardware in there from my plane crash 20 years ago -- but everything else is just new wear and tear. Specifically I have new bone growth/calcification in my right hip (same leg where my femur was broken) -- my body has overcompensated for the bad leg by putting more pressure on my hip.   My lower/mid back has created more discomfort to the point that when I wake up it takes me a couple of hours to be able to walk completely upright (I need to stay a little hunched over for it not to bother me).   Like typical Ramirez fashion I've learned to power through and have tried my best to feel better (hot epsom salt baths, naps, wearing flats, vodka, laying down and more vodka!), but the doctor said I need to try 6 weeks of physical therapy to help the situation.  He said if he operated it would only created other issues and would not increase mobility so it's up to me (and my Physical Therapist) to make things slightly better.  I told the boys I will trick out my scooter and add hydraulics to it so that it's "cool".  Alex told me this morning "it's ok Mami, I won't be embarrassed." I said "if you act like you are I'll just run over you."  I hope he remembers that when I visit him in college and I'm in a neon-light-decorated scooter.

10)  Chris is great and has managed to convince his friends from work (JD and Monica) to move to our neighborhood.  I think his master plan is to have as many work guys move into our neighborhood as possible and that would be super great because all his friends from work are pretty fun.  I've crashed their "guys lunches" many times and it's fun to be around a bunch of dudes.  Dudes=no drama.  No drama= peace of mind.

11)  Ben and Alex are enjoying playing football for their 6th grade St Rita's Spartan team.  The games are really fun and the kids are all such sweet hearts.  The play offs begin this weekend so we're excited to see how far our team can go for the DPL title  (Dallas Parochial League).  Go Spartans!

12)  We had a great time at our annual philanthropic Halloween party.  Everyone really stepped it up and showed up in some amazing costumes!  This year we allocated all the funds to the North Texas Make-a-Wish Foundation and were proud to provide them a sizable collection of donations that will allow many children in our area to have their own dreams come true.  Thank you to all our friends that came and had a blast for a great cause.

Alex helped with the "haunted entry" of the party with other kids for about an hour until they were dismissed.

Chris and I wanted to get our money's worth from these authentic German clothes so we sported them as our Halloween costumes.  Cha-ching!  

Dori sings

Dori knows how to play with your emotions... Listen to the end for what he says to me. Ha ha ha! 

http://youtu.be/owzXJzrxpIE

Happy 7th Birthday

Happy of happiest 7th  birthdays sweet Dorian and angel "boo boo bear" Wynnie!! It seems like these 7 years have flown by but it also seems like the babies were first brought home from the NICU ages ago. Today has been a very happy day for Dori. He had home school this morning and played with his nurse Magahn, then once the boys came home from school we all went with Marcia to
Gloria's to eat. We celebrated both Dori and Marcia's birthday by letting him eat all the black beans he wanted.

Today we also are sharply reminded how much we miss Wynnie. This is the first brthday without having them both here, but we know that he and his love are here in spirit.

This past weekend we, along with our friends, hosted our Halloween Spooktacular. This year all the funds raised went to the North Texas Make-a-Wish Foundation. We are overjoyed in knowing that all our friends had a nice time and through everyone's donations we we broke our fundraising record! So happy to know those donations will help make so many children's wishes come true!

Here Dori is concentrating on his black beans.  He had no interest in taking pictures, he was 100% focused on the beans. 

He was playing peek-a-boo with Alex for a while. 

Dori enjoyed listening to the music that was playing on the restaurant patio.  

Some fun old pics of Wynnie that I found on my computer

I always loved putting different hats on Wynnie.. he didn't seem to mind usually.  He was always so busy making fun noises and laughing.  Sweet boy!  

School of Hard Knocks

Ben and Alex have dived in head first to their new school-- St Rita's Catholic School in Dallas. We've been so pleased with how nice all the other families are and how welcoming they have all been. The other kids seem to be very nice and we're seeing the boys looking forward to socializing with them. The only hiccup is slowly getting the boys acclimated to the rigorous academic standards St Rita's has. Sometimes we hear them say "this is too hard!!!" during their 2 hours of daily homework each night. But we keep telling them "there's a huge difference between something being so hard that you don't understand it versus the other type of hard--- hard work." 

St Rita's is not hard as in "over their heads" hard, it's just more work than they've ever been exposed to and we couldn't be happier. The sooner a kid learns to bust his butt, the better chance he has of taking that into adulthood. Neither Chris nor I get any nights off, he does spelling and vocabulary during the commute and math at home, and I help them with English composition and social studies. Then between the two of us we help them with science, religion and chauffeuring them back and forth between all their sports practices. It's a daily marathon but it's good for all of us to stay busy and engaged with their activities.  Dori just laughs and sings the day away while we're running around.  Spending time with him is a nice respite from all the busy stuff with the older boys. Here are a couple of pictures of the boys' sports teams. 

Here are the St Rita's Spartan 6th Grade football team. Chris was fortunate enough to spend an afternoon getting to know a lot of the other team dads at the St Rita's golf tournament, he had a blast! 

Here is The Galaxy Soccer Team ... Don't let the lack of enthusiasm on their faces fool you. 

Here's a picture of my wingman Dori. 

The hardest part of being a parent is to be a consistent parent. With all the new homework and getting to know the new school regulations, the boys have "forgotten" to hand in homework and "forgotten" to do stuff that counts towards their grades. After many repeated reminders, many "you need to be more accountable for your work" discussions and lots of fruitless yelling, we had to make FINAL warnings. In sum, we told the boys if they didn't take care of business with their school work this week, they would not be allowed to go to the Husker game in Miami. They had all the resources at their disposal to get all their school work done on time, they should have known exactly when to hand it in (we have a friggin app that details what their homework is on a daily basis) and they were given ample warning. Sadly, both boys failed to hand in some of their assignments, complete their homework as instructed, and both had a laundry list of excuses as to why.  As a parent it's hard to have to crack down the hammer but once you threaten to launch it, you HAVE to or else you lose all credibility. So yesterday we informed the boys that because of their multiple transgressions and repeated warnings, and the help they had been provided both at HOME and at SCHOOL to avoid those transgressions, they still jacked it all up. Therefore, we had to cancel our family trip to Miami to watch the Huskers this weekend play again The U. There was lots of bawling, lots of snot running and lots of "I didn't know!!!??!!!".  Luckily Chris was able to get his two besties from Nebraska (Spud and Fish) to drive down through the night to join him today on his flight to Miami. So what am I doing this weekend? I am NOT in Miami with Chris, Ben and Alex. Ben, Alex and I will be getting our academic stuff organized, getting a jump ahead on next weeks' assignments, etc. Hopefully this hard lesson will remind them that we mean what we say and that consequences aren't just empty words, they are real. 

So if you see me this weekend and I'm not all "smiles", it's because I'm supposed to be in Miami, not at Walmart buying diapers or the grocery store buying milk, or in my kitchen drilling vocabulary words to my boys.  This too shall pass 💗

Homebound school

Check out the sweetest little teacher's pet on the planet! Today is Dorian's 1st day back at Homebound School with Miss Carolyn. He hasn't seen her since June but he immediately remembered her and asked her for the cha cha cha song (his favorite song that he only did with her last year during his lessons). He has such a sharp memory. Wish I could say the same.  We're so proud of him! 💙💜💙

Dorian's Make-a-Wish came true!

If you click on this link you will see the short video I made of Dori's Make-a-Wish that happened yesterday.  What a magical day for our entire family!!!

http://www.mercedesramirezjohnson.com/2015/08/31/ne-yo-meets-his-biggest-fan/

Dori had such a blast!! 

Here is a group picture of Dori, Neyo and Dori's extensive entourage.  For being a grammy winning mega-star, it's amazing Ne-Yo only came with one person.   Dorian's entourage was bigger :)  

Within 2 minutes of Ne-Yo leaving, Dori had partied his pants off and was exhausted from all the excitement.  Our family will forever be grateful to the Make-a-Wish foundation staff and Ne-Yo and his management team for making this happen so quickly.  We are FANS for LIFE!!! 

What a week!

Wow! What a difference a week makes!! Just a few short days ago on Monday we were afraid of how many days we'd have left to love on Dori as we brought him home from the hospital. Today less than a week later he has shown us how powerful the curative powers of home sweet home can be. His energy levels are up, he's moving his head and feet to music, and is back to giggling. 

Today he really surprised us, we did a trial of a couple of hours on only his nasal canula instead of the bipap vent mask nor the rebreather mask. Much to our amazement he was wide awake and happily maintaining high O2 levels and a comfortably low heart rate which meant his body was at ease with the canula. From his demeanor we could plainly see how content he was without his entire face covered up with all that equipment!! What an amazing string of improvements he has made these past couple of days! We are so proud of him! 

Here's his happy face while his nurse Mo was feeding him tonight. What a cutie! 

First day of school and Amy

Here's a video of Dori grooving to Amy Whinehouse. He thought the song was funny for some reason so I started recording :) 

http://youtu.be/vxRn8mZwVPU

Ben and Alex enjoyed their first day of school. We were so excited for them and nervous at the same time. For some inexplicable reason I came down with a nervous laughing attack while Chris was driving and it didn't help Alex's nerves and Ben was saying "why are you laughing?" And I was all "I don't know!!?!" 

They seem to like it and even overheard Alex tell his friends "I think I made a girlfriend today." I don't know what that exactly means but it sounds like it went good. Ben said his Spanish teacher is "super nice and positive" and he seemed to enjoy talking to everyone. Alex asked everyone in his class to pray for Dori. 

Last night was their fall sports kickoff and today was only a 1/2 day so week one is a win! 

Dorian's special shout outs

Dori just finished Facetiming my sister. He didn't say her name while she was talking to him but as soon as I put him down and turned to talk to Chris, Dori started laughing to himself and saying my sister's name. 

This is what I captured after I started recording ... So cute!  Click on the YouTube video to see 

http://youtu.be/GSo4ikF41Zc

Aside from Dori keeping us all on our toes, the nice people from Make-a-Wish foundation stopped by to visit. As soon as they walked in the boys were happy since they brought them a new football, a new basketball and a new remote control monster truck for Dori to watch. 

They gathered a lot of information about all the things Dorian loves to grant him a special wish. We named off his special songs, his favorite singer, his favorite food, etc. I'm pretty sure whatever they are able to do with such short notice will make Dorian feel like a total superstar! Ben and Alex also helped give their input like "when we watch sports we can't cheer too loud or else it scares Dori and he starts crying" and "if someone sings for him it can't be a loud band or he'll start crying."  I'm really glad they chimed in for two reasons 1) they took pride in talking about Dorian and remembered little details that make all the difference and 2) Chris and I were so overwhelmed trying to think of what Dori would want that we hadn't thought of little things like that.  

Dorian--- The Man. The Myth. The Legend

So happy to report that Dorian is finally home. He was acting all sleepy and didn't want to eat but as soon as we told him in the hospital that he was "going bye bye" he perked right on up and kept asking to go outside. 

Thankfully there was no need to use an ambulance to go back home. He was in a low enough O2 requirement that he could go safely with the use of an O2 cylinder and a rebreather mask. 

Chris has been running around all day like a mad man getting meds, getting groceries, getting final school gear for the boys (since they start on Friday) and only once did I burst into tears out of frustration.

On the other end I've been hassling our nursing agency since last week to give us more skilled nursing hours since his condition was obviously taking a more serious turn.  After many phone calls, many emails, many ALL CAPS texts and the help of Miss Kathy our hospice Coordinator Nurse, we finally have threatened enough people that all is finally on the right track. Now the fun part will be to actually find the nurses that will be working the new hours, but we'll take one adventure at a time.

Here are his perfect little toes resting on the ottoman, his new command center so that everyone in the house can have easy access to him. He truly is happy to be home. He asked to look outside so Chris picked him up and Dori rested his sweet head on his shoulder and looked outside to the backyard for a while and was satisfied. 

Thanks to all who have prayed for Dori and to all our amazing medical staff and Kathy with Community Hospice of Texas for making this transition so great. Dr Gelfand has been such an important player in Team Dorian. He talks to us and asks us for our input like we are all equals-- all with the same intentions to get Dori as cozy and happy as possible. God blessed us when he put him in our path 6 years ago. 

Go Team Dori!! 

Going home tomorrow

We are happy to getting everything ready for Dori to come home tomorrow. Today we transitioned him off IV fluids and switched him over to a g-tube down his nose for pedialyte fluids to keep him hydrated. He is still enjoying his meals by mouth by spurts. Today he was laughing and wiggling his arms and tapping his feet to the beat of the music. 

Ben and Alex had a busy day so we were in and out of the hospital, Marcia and Viktoria spent time visiting with him while we were gone. Ben had a scrimmage game and I was Alex's date to the Mother Son 6th grade pool party. Everyone was super nice, but it's just really weird answering questions like "how many kids do you have?" and "what grade is your younger son going to be in?" Normally Chris and I always hang out with people that already know all our back story so it was a little adjustment today but I'm thankful that all the kids and moms seem like really good people. 

If Dori is able to be under a 60% O2 requirement then we can take him home in our car, if not we'll take him home in an ambulance. Dori always has been a "go big or go home" type of guy so of course his return home should be similar to a presidential motorcade 😊. 

Tonight I've been face to face with him in his hospital bed so he was trying to scare me saying "BEE!".  He was closing his eyes then opening them real fast like he was launching an ambush attack on me. So when I screamed scared of course he'd start laughing. I got a good pic of him laughing under his mask at me.

We're focusing on having as much fun with him as possible, and Ben and Alex have been very good at giving him lots of kisses and talking to him. Dori always loves it when his brothers talk to him and when they play around him so we know he's enjoying having them around. I'm glad they have 4 more days at home until they start school on Friday so they can spend quality time with him. 

I can't imagine going thru all of this all over again without Chris and without all our close friends and family. There will be plenty of time to say how much this sucks and how sad things will inevitably be so for now we continue to love on Dori, play with Dori and let him eat and scare us as much as he wants. He is so awesome. He is the spunkiest, most stubborn lover boy I'll ever know. 

Bee!!!! 

Sporting his Mickey Mouse gown. Only Dori could give it swagger and he does quite well. 

Selfies

Dori is saying "snuggle time" and "cheese!" and "I love you!" under his mask. He's feeling the rthymn to the music we play him. He ate 3 good meals today and we look forward to what tomorrow brings. 

So what do you do when you're bored at the hospital? You take selfies! He was truly smiling and saying cheese under the mask, but you can't really tell from the picture!! 

The Comeback Kid!

 Just  in case you didn't know, Dorian A. Johnson is a stud. Yesterday afternoon he became very lethargic and unresponsive to our voices into the evening. Mid afternoon Ben and Alex came to hang out and chat with Dori and give him lots of kisses, then they left to do some back to school shopping with Chris. 

We had heard his Carbon Dioxide levels were very high but it wasn't until Chris left to spend some time with the boys did we get the news that his CO2 was through the roof. His last labs had shown that his levels were so high that they weren't even within the measurable range. In as calm and kind way as possible they told us that with that much CO2 in his body he probably wouldn't be able to make it through the night due to the high toxicity levels. 

I put the sos call to Chris and he dropped off the boys at Mike & Stephanie's house and came back to be with us as quickly as possible. During that time the staff was able to run more blood gas labs and with just a couple of hours Dorian's levels had slipped down to "within measurable levels".  At that point he was a little more alert and was saying repeatedly under his muffled mask "hungry! Turkey! Turkey! Turkey!!" over and over again.  Then by 2AM this morning his co2 levels were checked and again his levels had slipped down even lower! That was huge relief to us, because we weren't emotionally ready to have one last night with our big guy. 

Since then he has taken two breaks to eat his beloved turkey and yogurt with the help of lots of oxygen switching and people standing around helping us. He has perked up listening to Chris's music this morning and was bopping his head to the beat and drumming his tummy with his hands. He isn't as irritable and keeps telling us (and any medical staff that comes into the room) "I love you!" He's even been laughing and calling out for Wynnie a couple of times which has been so sweet.  

We've had very direct and honest discussions with all the staff who we trust and know well, and it is clear that Dori does not have years nor even months left. His heart has deteriorated to the point where it's increasingly hard for his body to work.  Everything that is happening right now is very reminiscent to how Wynnie was a few weeks before he assed. We'll continue to give Dori as much love, laughter, turkey and music that he can handle. He is happy and we'll stay on course to enjoy him every single minute we can. Thanks for your continued prayers for our comeback kid!! Here he is tapping his belly to some UB40 jams. 

Dori back in the hospital

Last few days while I was out of town Dori wasn't feeling great. He was prescribed another round of steroids to help him get over this hump but as of yesterday evening he wasn't wanting to swallow anything, not even food. He's leave things in his mouth and let it just sit there. 

So this morning without him eating and without him being able to take any of his heart meds or steroid, we were afraid he's begin showing signs of dehydration so we brought him into the ER. 

Thankfully nearly half of the medical team recognized us immediately and did their best to put Dori at ease. He was getting respiratory assistance but when they switched him over to give him a breathing treatment his O2 dropped down to 20 (ideally he is in the upper 80s-90s). 

They bagged him until he stabilized to normal then placed him on a bipap to give him extra help. He was breathing completely on his own with the bipap, but a few minutes ago had to be bumped up to his bipap helping him make more forceful breaths. Thankfully has restored to his normal color and even was telling the ladies "hi!!" and "hungry!!" through his bipap mask. 

Once all the medical info was updated in the ER he was brought up to the Picu. Before we left the nurse down there complemented Chris and I on how calm we are.  Chris said the main reason we are calm is because we have a concrete plan and don't have to make emotional decisions because we've already made those ahead of time. 

Again it's nice to see so many familiar faces in the Picu from past visits with both babies. 

After chest X-rays it looks like he has pneumonia and his heart has gotten worse since his last heart scans a few months back. If the heart isn't strongly pumping the blood thru the entire body then his body isn't going to work as well... Especially the lungs. That's what we may be looking at. His heart may be making him work way harder than normal, like if a normal person ran up a flight of stairs. 

He is more verbal and has started hitting his nurses so that sounds like he is feeling a little bit more stronger and alert which of course are good signs. He always likes to feel in control so he has had a firm grip on his tubing. 

We'll continue to monitor him here in the Picu. They have a great team here taking care of Dori that are in close communication with our specialists so we know he's in the best hands. Please please no visitors -- your  prayers are most gratefully appreciated and are is what is most helpful to our family at this point.

A huge thank you to our friends taking care of Ben and Alex (the Caracalas family), we love you guys. 

The Soul's Mission

This summer has gone by so quickly that I can't believe that the boys will start their new school so soon!!! We're excited for them to start their next phase at St Rita's Catholic School for middle school. It's a great school, really friendly faculty and it's right next door to Jesuit High School. 

As we've been busy getting the boys prepared for the "next level" we've also been spending lots of time having fun with Dori as much as we can this summer. At times I get sad comparing all the neat milestones and new adventures the boys are experiencing and wishing Dori could have a chance to do all that and more. 

But today like most Sunday's, if I'm not teaching Sunday school then I'm sprawled out on the couch watching Oprah's show Super Soul Sunday. She has spiritual leaders, life coaches, yoga/meditation experts from all walks of life and all ends of the spiritual/religious spectrum. Since Chris and the big boys are gone in Nebraska for a golf tournament this weekend I binged on 3 episodes while hanging out with Dori. 

Today she had a guy who's name I don't remember and whose book she accredits for completely changing her life. He is an expert at the concept of being true & joyful by tapping into your soul's purpose. What really caught my attention was when he talked face to face with a Mother who had twin sons. One of them survived and grew to be healthy & strong. The other twin died only four days after birth. She was having a hard time accepting his death and felt how unfair the death of her son was to her and to their entire family because the pain of the loss was on some days unbearable. 

He looked with his kind eyes right at her and said (I'm paraphrasing) "Your son's soul served its purpose. Even if he only lived for four days, his soul willfully came to this earth and was loved and cherished. Then his soul willfully left this earth after serving its desired purpose. You can't look at your other son as he grows up and think 'my other son should be here graduating too. My other son should be going off to college too. My other son should be getting married and starting a family too.' Why? Because when you do that you're not fully enjoying what your healthy son is accomplishing, and your inadvertently belittling the short time your son was with you. He served his purpose by loving you. He served his purpose by feeling your love and will forever be a part of your family. You are forever changed because his soul successfully is a part of yours and all who loved him.  Focus on THAT accomplishment, focus on what he did not what he never became. His soul did exactly what it intended to do." 

Well as you can imagine I was a crying mess listening to this. While he spoke I chose to close my eyes so I could feel like he was directly talking to me. 

His words were so life affirming, so direct and so comforting. Dori and Wynnie are living their purpose. Their short lives have brought so much love and joy to us that I can just burst of pride. The innocence in their eyes, the sincerity in their smiles and the sweetness of their gestures are beyond description. Their souls weren't made to graduate from Harvard, get married or find the cure for cancer--- their souls are leaving their own legacy. 

I'm so glad I watched that today. There's nothing that could have resonated more strongly with me than that!  We're so proud of ALL our sons and the world they are creating for themselves. Each has their own purpose and their own path. 

Here are some pictures from the past few days: 

Dori after swim time this afternoon 

Smooching on Dori... He didn't seem to mind. 

A couple of weeks ago the boys made memory boxes with our hospice Child Life Specialist. Alex wrote a lot on his box describing all of Wynnie's favorite things. He was really careful and took a lot of pride about making it just perfect.  Ben covered his lid with dozens of hearts. I made a comment like "wow I like all the  hearts you used Ben, it's neat!" He said "I used a lot of hearts to show how much I loved him." 

My kids are my heroes! 

Dori's conversation with a shark

We're all in a frenzy here at the house with Shark week. In fact, today Jaws is on AMC, so Dori is being introduced to all the awesomeness Jaws (the first, original and best) has in store. 

Here is a conversation exactly as Dori would have with a shark. Dori apologizes for his lack of clothing and ravioli on his face, it was "his feeding time"

See it by clicking here 😉

http://youtu.be/z3EigcLS5U4

Dear Ben and Alex

Please read this Ben and Alex... This describes our family and YOU and your big hearts perfectly:  

http://themighty.com/2014/12/dear-sibling-to-a-child-with-special-needs-let-me-tell-you-why-youre-amazing/

Like last night when we were going to watch the women's World Cup final game and Ben said "aren't we gonna bring Dori into the room with us?" And when we were cheering for Dori Ben started cheering for Wynnie too (to remind us that Dori isn't our only little one... Ben is always "what about Wynnie?" to not leave him out.)

Or for example while we were on vacation and Ben and Alex were talking about what's the first thing they'll do with Wynnie once they see him in Heavem. Or Alex walking by Dori and returning Dori's "hi" and giving him a quick kiss or a pat on the head as he walks on. You boys make us so proud and we just don't tell you enough. 

We had blast learning and having fun in the east coast these past few days. It was awesome to watch the fireworks on the 4th right behind the Lincoln memorial.   The best part was once the fireworks ended people started chanting "USA! USA!" 

All the boats relaxing all day waiting for the fireworks show. We passed and waved during our boat trip to Alexandria, Va. 

Date night in DC ... Had the best brisket nachos! Realize that we are too old to know all the "micro brews" and speciality beers that all the young folk drink. We'd order millers or buds and they'd look at us like we were aliens. 

Washington DC and East Coast Vacay

Ben was upset he couldn't go inside the house to visit and wondered why the first family wouldn't come to the windows to wave at everyone. Then they were entertained by counting all the snipers on the White House roof and waving at them. 

There is truly no more perfectly patriotic place to be than here during the 4th of July weekend. So glad Chris planned this for us all. 

The Vietnam Memorial ... If you look on the far right you see the lady tracing the name of her loved one on the wall. 

German Restaurant in Hagerstown, VA

Walked on a trail in the Blue Ridge Mountains

Appotomax Courthouse where Lee surrendered and confederacy was no more. We learned more about the civil war in the 3 days than you could possibly learn. It was neat!  

Cannon at Fort Manasas 

Blue Ridge Mountains scenic drive 

The amazingly powerful WWII Memorial around Bedford, VA. Our tour guide had us all in tears. His dad survived D-Day and he gave a powerful account of his dad's memories of that fateful day. His dad never talked about the war and he never even knew his dad fought in D-Day until this memorial was built. He asked his dad how he survived d-day and his father said by burying himself in the sand and then hiding behind dead soldiers. This was why he never talked about it because he felt ashamed. Sad to think his father lived most of his life not knowing he was a hero. 

We really liked the mountains in Virginia... So beautiful! 

Learned a lot about President Woodrow Wilson in his presidential library in Staunton, Va. This town was so adorable! 

Inside a replica of a WWI trench 

Visited the University of Virginia 

Woodrow Wilson presidential library 

The first night Chris won by a large margin. The second night the boys wanted a rematch so they found another putt putt golf place and Ben only lost by one stroke 

Wow. We had no idea how enormous the Iwo Jima monument is. So wonderful to see. 

Arlington National Cementary 

Very symbolic statue at the entrance of Arlington National Cemetery 

Williamsburg, Va ... This was a town focused on the early American colonies. We had tickets for the reinactments at Gettysburg but they were canceled due to potential thunderstorms. 😐

I couldn't help but think of Tropic Thunder with this statue 😕😞

We also visited Thomas Jefferson's Monticello plantation.  it was beautiful! He truly felt compelled to bring the world's knowledge to all of those around him. 

We stopped by George Washington's home as well. I didn't realize the full extent of how selfless and what a true hero he was until now.