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 www.hideandseek.org.   More information to come in the next few months... stay tuned. 

Wishing everyone a safe and enjoyable month!