Friday, May 29, 2009

Summer here we come!

Dorian looks so grown up in this picture!!
Wynn loves to hear his voice and he always has something important to say.
Dorian and Wynn enjoying their 1st movie experience!  All smiles of course. 
Wynn is thinking "Holy water is cold papi!"  
Dorian didn't skip a beat with his pacifier during his baptism at all.  

It's been an action packed month for all 4 Johnson boys.  Ben and Alex finished up preschool yesterday and sang for the Kindergarten graduation (very well choreographed I might add!), and they are finishing up football season (today is the championship game and I'm smellin' a victory!).  

Dorian and Wynn also had a busy month!  On May 16th we baptized them at St. Catherines of Sienna, the same church were Ben and Alex were baptized.  It was great to have friends and family from near and far help us celebrate our big occassion for the babies.  Thanks to the Godparents Kiley and Stacy for your support, and for everyone who was there that helped make it a special memory for all of us.  

The babies have enjoyed many "firsts" this month.  They went to go see a movie with the big boys.  They actually lasted 50 minutes in the theatre before I wheeled them out in the stroller and walked around the mall with them til the movie was over.  They did a great job!  They also went to their first pool party.  Although they slept through most of it, it was still fun to take them to the annual memorial day party we always go to.  

The babies are going through a round of antibiotics to clear up the considerable amount of fluid in their ears which we did not know they had.  The ENT caught it during Wynn's hearing aid check-up visit and since Dorian was there he quickly examined him too.  Both of them have extremely narrow ear canals so a pediatrician with normal ear scopes would not see it.  We'll see how much the antibiotics can help clear out to hopefully delay putting in tubes.  The great news out of all of it was that 25% of Wynn's hearing loss could possibly be reversed with the removal of that fluid.  Even though he would still need to wear hearing aids, there's a chance it wouldn't be as severe as we initially thought.  

During the 1st half of June the babies will get checked up by lots of doctors so it'll be a good barometer of how they are doing in all sorts of areas (lungs, eyes, heart, skeletal, etc).  

Summer is filled with all sorts of fun stuff - we are leaving for San Antonio tomorrow for our 1st family vacation with the babies to visit family and see all the kid-friendly sights (Sea World, Six Flags, the River Walk, etc).  Ben and Alex will be doing swimming lessons, Ben's playing  basketball on the team Chris is coaching, and we'll be scheduling tons of play dates since they are home with Anna and I all summer.  Wynn will be starting he speech/hearing therapy through ECI in June so I'm sure he'll dazzle them with his cuteness.  We'll step up our physical therapy to get the boys to do the fun stuff like rolling over (Dorian is almost able to do it on his own!), sitting up (we still have a little ways to go on that, they look like they are drunk when we try to do it with them), and bets are on to see if they'll say "mama" or "dada" first.  Yes yes I know, they usually say dada first since Ds are easier sounds to make for babies, but a girl can hope, right?!?!  

Today Chris and I are celebrating our 11th year wedding anniversary!!  It's amazing how quickly it's flown by, all the fun things we've done, all the places we've visited, and the pack of kids we've had.  Who'd a thunk it?  Alot of you that read this were there for us on our special day 11 years ago... thanks for sticking with us through it all!  Looking forward to seeing as many of you as we can this summer!  Dallas is always a fun place to visit so please come on down! :) 

Wednesday, May 6, 2009

May 2009

Dorian... quite the happy boy!
Anna with the boys.  I'm sure she thinks we're crazy!  
Only Wynn can make a hearing aid look good!

Hi everyone!  This month has been a busy one!   Thanks for everyone's patience as we have a tendency of not being great at returning phone calls.    This Saturday we welcomed Anna from the Ukraine as our Au Pair.  I told Chris that I was gonna buy a bottle of champagne and pop the cork as soon as she stepped into baggag claim -- and it wouldn't be for her, it would be for ME!!  We are so happy that she has joined our home sweet home.   I've been happy at how Ben and Alex have taken her in very naturally.   I even found out after her 3rd day here that Alex got into a heated discussion at school defending Anna because one of the kids in his class was saying Alex wasn't telling the truth about how she makes really really good paper airplanes.  How cute!  She is a tremendous help with the babies and keeping the house in order with all of Ben and Alex's stuff... it's like a dream come true.  I look forward to our friends all meeting her, she is very nice.  Here is a picture of the boys with Anna tonight before we all went to the store.  Notice the welcome signs they made for her in the background.  :)

Wynn is officially wearing his hearing aid everyday.  The right one doesn't fit well into his ear so it's being remolded and should be ready within another week, but he wears the left one when he is awake.  We have a hard time with the ringing sounds the hearing aids make, but the audiologist assures us we need to just wiggle it in deeper into his ear and the ringing should stop.  A whole new world has opened up to him now that he can really hear.  The profile picture of Wynn above shows his left ear... cute, huh?  

Dorian and Wynn had their 6 month check-up this week with another round of vaccines.  They didn't like it at all, and Anna couldn't watch them get their shots.  Both babies rank under the 5th percentile in height and weight but that is to be expected with their condition.  Both little guys weigh 11 pounds.  Next month we'll be busy with lots of doctors appointments, we'll be seeing some new specialists that were recommended.  Not because anything is going "wrong" at this point, but because we need to get the babies introduced to the folks we'll be depending on in the future (cardiologist, ophthalmologist, and pulmonologist).  

We've heard through the grapevine that the Children's Hospital in Denver is going to have an MPS Awareness Day with some events planned around it.  We're trying to find out more information about it and possibly may pack the kiddos and go out there.  We have good friends, the Simpsons, that live out there so we'd have fun visiting them and also enjoying everything Colorado has to offer.  But there's no definite plans, we just want to start getting involved with different ML II research and awareness foundations out there.   You never know when a new study is going to pop up and it would be nice to have the babies be known in the ML II research community. 

One of our friends asked us in lieu of gifts, what foundation we'd like donations made to.  Although we haven't really picked one, and we don't plan to start our own foundation, we want to affiliate ourselves with one this summer.  The one I've been reading up about a bit this month is called the Hide and Seek Foundation (that supports all lysosomal diseases).  Their website is   More information to come in the next few months... stay tuned. 

Wishing everyone a safe and enjoyable month!