It’s real.  After all that we’ve been through, sometimes I feel like I need to pinch myself.  Ian has been home for two months now.  I know that at any point something could pop up and ruin our happy streak, but I just keep trying to shove that back where it belongs.

Ian’s Breathing:

Ian had a wean to his vent several weeks back and he handled it beautifully.  He is doing better than ever with his breathing.  His Pulmonologist plans to do one more wean to his vent in May and then just let him grow on his settings.  He said when he’s ready to come off the vent, he’ll wean really quickly.  I have learned that I have to practice patience here.  When I see Ian doing well – I want him to soar.  But he needs time to be successful.

Ian’s Development:

We have been going strong with Physical Therepy and Occupational Therepy for several weeks, and it is crazy to see the progress.  Ian is just a hair away from sitting on his own.  He can for a few seconds, but he’s not stable yet. He got a stander (on loan for now) and he tolerated it really well.  This will help him build strength in his legs.  Justin calls it the torture device because it does look a little crazy, but once he’s strapped in he’s happy to play if you keep him occupied.  This will be good for him because he really WANTS to move.  He can kind of roll and skwirm his way around, but he gets frustrated.  If you put him on his feet he tries really hard to go – he knows what to do – he’s just not strong enough. Lastly, he’s been doing really well reaching for, picking up and holding his toys.  And – he’s bringing them to his mouth.  This is a huge milestone and will get him closer to eating by mouth. (He is 100% formula fed right now through his Gtube)

Ian’s Upcoming Week:

This week we have Ian’s first outpatient cardiology appointment since discharge and a head CT scan.  Ian’s heart has been pretty stable, so I am just hoping and praying that nothing has changed.  We love Ian’s cardiologist, so it will be really good to see her and show her how well he is doing.  The CT scan makes me a little more nervous.  Ian’s head has been growing faster than the rest of his body.  He has a dandy walker cyst on his brain, which can cause hydrcephalus (fluid on the brain).  I try to just completely ignore this to be honest.  We have had so many doctors tell us its just a wait and see game with the cyst.  It can cause coordination issues from unnoticable to not being able to walk.  Somehow I can’t believe his will cause him not to walk, because he just seems so motivated.  But the hydrocephalus is scary to me.  So – if you pray, please send one up for us that his brain is just growing normally now that he’s able to be happy and interact.

Congenital Heart Walk:

I signed up and created a team!  For some reason I am unable to log in though!  We would love for everyone to join us again for the walk.  Last year we had a huge team.  Justin and I were really shocked and thrilled with how many people came out.  And we were in the top 5 teams for raising the most money.  We promise to be more organized this year!  Register or Donate to the Ian’s Infantry Congenital Heart Walk Team