Toy drives, Make a Wish and decisions!!!

On Friday I was able to head into Children's with the Manager of Starbucks to deliver 3 large boxes of toys.  It just felt really really good to be able to give back to a unit that has been our second family for the past 4 years.  People donated such useful toys that will really help the kids pass the time while they are there.  I was also happy to not be inpatient with Avery, always a plus.  It's nice to be on the outside just visiting for once  Although I could not help but feel a little weird that is this what it would be like when Avery is not here :(   That feeling did not last too long b/c I got to see my favorite nurses and got a really nice compliment from one of the Attending Drs.  He said that he had been uttering my name alot last week as an example.  He said that I was the exception of the parents that know their child so well.  Basically, when I say that Avery has this or that going on it is usually true.  It was just really nice to get some positive feedback.  I just hope one day I can help many of these families to communicate better with drs. and nurses. 

Today, the Make a Wish volunteers came to start the wish process.  I was pretty much set on doing a computer for Avery with maybe a special seat.  Of course, Janessa let it be known that we have plenty of computers around here and that going on a trip would be nice.  My first reaction is to say "are you crazy girl" .  How could we even fathom handling two very involved boys in wheelchairs, on an airplane with retching cycles, TPN, respiratory problems (just to name a few).  Rick was right there with me.  Then the volunteers had shared some nearly impossible Disney wishes (granted they didn't have two handicapped kids) but they made the impossible happen.  Janessa immediately perked up as Rick and I are looking like "for real????"  Are we crazy for even entertaining this idea.  So then we started toying with a Disney cruise (another???/).  It came down to trying the cruise first, then Give Kids The World and a computer last.  I am told by many families that GKTW is amazing and so accomodating in every way.  They would even provide a hospital bed for the boys, bath seats, O2 and so many other things.  Our only major concern is that nursing has to be covered.  It would not be any fun AT all if we cannot take our nurses.  We actually asked for two nurses but I doubted that will go through.  I have to go through and make a list of everything that the boys would need and see if it can be done.  Once we submit it then we will see what MAW decides and I guess we will go from there.

This is exciting to think the Nault's (the whole family) could go on a vacation.  We once went to Disney when Janessa was 3 and Isaiah was 18months.  He has just gotten his wheelchair which got us ALOT of perks.  While Isaiah had an great time, poor Janessa got so so sick.  She vomitted the last 3 days and ended up in the hospital straight from the airport for 3 days due to severe dehydration.  She doesn't remember a thing.  So you can see my hesitation and fears.  But you never know, maybe the stars, moon and sun will line up and we can make this happen without any major casualities :) 

Here are a few pictures of the MAW volunteers and the gifts they gave the kids.  Unfortunately, Isaiah was out of the count b/c he is retching today :(  Its Sunday afterall and no nurse.  Just like clockwork.  We will have to be sure to not go on our trip on a Sunday. lol

On the medical side, Avery is hanging tight.  He has his times that he doesn't seem to be absorbing his meds and is a hot mess and then times he looks great.  No fevers or respiratory problems but still vomitting.  He is getting his j tube changed tomorrow so I will be interested in seeing the placement and his poop situation.