So long, March!

As the month comes to a close we are thankful to have been home from the hospital for 2 weeks!  Overall, they have been a great two weeks and I think we all feel like we are finally coming down from the adrenaline rush of February and most of March.  While chatting with a friend she gave the word picture of a car idling and I think that is a great picture of what the first week at home felt like.  It just takes some time for your brain, body and emotions to shift gears.  Nathan was really struggling (and I mean reeeeaaalllly struggling) with sleeping which was probably a combination of having been in the hospital for so long and the fact that food is totally bypassing his stomach so some of the normal things that help babies establish routines just weren't there.  The past several nights have been great for his sleeping, which helps everybody! 

I just love how Madison automatically grabbed Nathan's hand for the picture! 

Above is a  picture we took after a fundraiser for Nathan yesterday!  Some women from a local MOMS club that I am in took it upon themselves to totally organize a fundraiser for us at restaurant in town.  Jonny and I literally did nothing except say "ok" about a month ago.  TONS of people from MOMS club  and Riverwood (our church) made it out!  I'm not sure of the $$ amount yet but let me tell you - it was a HUGE boost emotionally to walk into a restaurant and know people at almost every booth!!!  We were there for an early dinner (read: kids take loooong naps on Sundays) but from what we heard from the staff there were lots of folks there from lunch on!  THANKS so much to the friends who organized it, and those who participated. 

Madison explores the Rainforest at the zoo
Other highlights of the last two weeks have been taking the kids to the Zoo, having Jonny's brother visit and now having my dad here for a few days.

Our little guy has 2 big things going on this week:
 - An extensive eye exam will help us start effectively monitoring his vision as well as give possible insight into the pressure on his brain, which may be a factor in the timing of the first surgery to advance his skull.  Most kids with Aperts have some sort of vision issues...  we are just starting to learn about some of how his eyesight could be effected but I will spare you from all the possible scenarios and possible reasons why.    
- The Upper Endoscopy is finally upon us!  This is a big deal because this will probably be the final look that will determine the type of surgery and timeline for Nathan's digestive system.  We would love and are praying that we will be able to take a minimally invasive approach that will be effective for Nathan for a long, long time but that will also allow a "safety net" of second and third options should there be further complications later in his life. 

The sounds from above me are indicating that my precious "both kids sleeping at the same time" window is closing.  As always, thank you for your prayers and support. 

"My salvation and my honor depends on God; he is my refuge.  Trust in him at all times, O people; pour out your hearts to him, for God is our refuge."  
Psalm 62:7-8

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