Not much to say

I haven't written for the past couple of days.  Mostly because we've been out busy living life.  You know, the "regular" stuff.  Going to the park, swimming in the pool, cookout, birthday party.  And it felt so good to just be semi normal for a few days. 

Of course the new "normal" comes with an oygen tank and other wires, equipment, medicines and other such things. 

Manny has been having some good and bad days.  When we were in the hospital, he lost some of his skills.  We weren't sure if it was a sign of decline or just having not been held and worked with as much.  I'm happy to report that he's almost back to the skills he had pre-hospital.  Whew! 

So it seems it was just from the lack of touch and such.  It is already quite difficult to hold him due to the hypotonia.  Then throw in a dozen wires.  And an arm that has a splint from wrist to armpit.  And an arm that is in utter pain from the infiltration.  And you can't hold your baby for a while. 

He also does a lot of retching.  It's one of the scariest things to see.  There is absolutely NOTHING I can do when he starts these but pray.  I get his head in the right position.  I put oxygen on him (for when he's done so it's easier to recover).  But it's the most helpless feeling ever.  We'll be talking to the GI soon to see if he can do anything about it. 

Manny is also crying a lot more than he used to.  For days after the hospital he was crying basically all the time with no real moments of his happy, peaceful self.  But ... the past few days, he's doing more of the happy stuff and a lot less of the crying.  (Even at night!) 

Today he had an evaluation with Early Steps.  The very interesting part is that he passed most of the sections!  Way to go baby!!  We knew he would fail "adaptive" since he is completely NPO (Nothing Per Oral) and that's all about feeding.  But the only other thing he failed was motor skills.  So he qualifies ONLY for Physical Therapy.  (Which is all I wanted for him anyway.)  We'll have a goal for him to be able to sit independently for 5 minutes within the next 6 months.  They will also help show me techniques for range of motion and things to avoid contractures. 

So all in all, he's holding his own in most areas. We're extremely blessed.  I can't believe that I get to be the "luckiest" woman in the world to be chosen to be his Mama.  Every day (even the hard ones) is a gift. 

Hug your children and tell them how much you love them while you have the chance!