Tuesday, March 24, 2009

Spring: The Gift of Perspective

We are happy that spring is around the corner.  Ben and Alex no longer feel trapped inside the house all the time, football practice has started three days per week, and we're enjoying March Madness on TV.  Dorian and Wynn are enjoying the stroller rides we take around the neighborhood and listening to the birds chirp when we're outside.  

Dorian and Wynn turn 5 months old this week (on the 27th).  As they get older, we have fun listening to them coo and observing how alert they are to the world around them.  Alex likes to make Dorian laugh and Ben enjoys giving them quick hugs.   

Dorian took his second barium swallow test at the radiology department last week.  The OT and the doctor were pleasantly surprised since he did not aspirate (choke) on any of his liquids or solids they gave him.  So he no longer needs to have his formula thickened, he can have normal consistency for his formula/breast milk and we've started both of them on baby cereal.  

Our challenge has been finding an au pair.  The two last au pairs we chose we were both very excited about.  Both were nurses by training, and were very eager to join us here in Texas.  But unfortunately, both au pairs had their visas denied by their home countries (one from Brazil, the other from China).  Thankfully, Cultural Care Au Pair (the agency we are going through) has been good at sending us more applicants, and we chose a new au pair last week.  She is a college student from the Ukraine, and we are hopeful her immigration appointment next month will go well and that her visa will be granted to come to the US.  If so, she'll be with us by May 1st.  

Today the babies saw their neurometabolic specialist, Dr. Schiffmann.  When we entered the room, the babies were the center of attention because Dr. Schiffmann was accompanied by four other geneticists.  They were all really nice and Chris had an audience for his one man comedy routine.  :)   The doctor told us he is pleased to see the babies made it through winter without any major respiratory infections or setbacks.  We are not going to move forward with enzyme replacement therapy.  Although that treatment is helpful for children with other lysosomal storage diseases, those other diseases are concentrated in only one malfunctioning enzyme.  With ML II, it's 15 different enzymes that do not work properly, so the weekly IV infusions would not make much of a difference for either their neurological or physical issues.  

Both babies were very social with Dr. Schiffmann and his nurse -- laughing, following his face and all his toys he would take out of his old fashioned doctors bag.  They were a hit with everyone in the room!  We were so proud of them. 

As the months pass, we notice how tiny the babies are compared to "normal" babies their same age.  Our doctors assure us they are eating and growing at a healthy rate considering their condition.   But any babies also 4-5 months old look like sumo wrestlers compared to Dorian and Wynn.  That's ok.  I no longer get my feelings hurt when people at stores ask how old the babies are and gasp "Oh my goodness!  They are so small!"  I'd probably blurt out the same thing I guess if I didn't know any better. 

Although they are behind on some physical things a five month old "should" be doing (pushing up with their arms and rolling over), we do not stress about it.  I reconnected with an old friend from college who has a son with downs syndrome.  She told me something that really changed my outlook.  She said once she stopped comparing her son's abilities (or lack thereof) to other kids his same age, she was finally able to be at peace with his condition and actually enjoy the things he could do, instead of being sad about the things he couldn't.   So that's the mentality we've adopted.  We look forward to all the fun things spring has in store.  The babies will be baptized in May, Ben and Alex will enjoy their first real summer at home, and (CROSS YOUR FINGERS!) our au pair will finally arrive in May and make our lives much easier.  

Make sure you come on down and visit this summer everyone!  We love the company.