Saturday, February 16, 2013

Home again!!!!

Actually, we've been home since later Tuesday .  It's always a shocker how out of nowhere someone comes in your baby's hospital room and just casually asks "are you ready to go home?".  Umm....does anyone every say "no"?  ...........we were given a plan of Connor having additional calories and what isn't taken by mouth, to basically just give through his g tube.  .......and since being home, a little bit of weight was gained....about half a pound......and his newest medicine must be doing the trick because he's yet to have a major spit up.  Yay, Connor.  .......I do not really understand why his palate has healed so well  (though his pediatrician did say the back of his new palate is red) and yet, he's really having new difficulties with eating and swallowing.  ........for once, we'll be calling the speech therapist and they'll get to feel very needed by us.  Until's some pics.....\\

Lazy mornings lately!!!

This little guy finally figured out his 4wheeler can go!!!......unfortunately, he hits the pedal until he runs into any surface and then one must yell out "push your button" in order for him to realize he must do that to go in the opposite direction until he hits something.  ......I suppose he'll figure this out soon enough on his own.  It is fun watching him go.  He seems to smile like it's the coolest thing ever!

Meal time........Connor has gotten much better with eating.  He is usually eating atleast half of his little containers of food and has once eaten everything!  His bottles are not going quite as well yet but he'll get there.  We've been supplementing his calories and he's also using his g tube at night to get any additional calories he needs.

This last hospital stay, Connor was on the "clean" floor.  He met a few heart patients and was lucky enough to get visits from the volunteer dogs.  

When we were bored, we'd occasionally go for walks.  We tended to only go on walks when we knew it wasn't meal time....a popular time where everyone is out and about.'s best to try to stay away from too many folks when venturing outside of his hospital floor because of the germ factor.....then again, it was fun seeing how much others enjoyed seeing Connor.  ....sometimes you forget that alot of the patients on a "clean" unit has been in the hospital for weeks and even months.   A clean unit houses many patients that must stay away from viruses and the older kids really loved seeing a baby.  ....the nurses and I were thinking maybe Connor and I should start a baby volunteer program just to see these kiddos smiling.  :D, when you have a baby that you largely isolate at home, it's fun to get the attention every mom wants for her babies.

I looooooooved on this one the minute we had a visit at the hospital.  Our children's hospital has a strict no kiddos under 14 can visit right now but you can meet your families in the cafeteria.  We went entirely too long seeing each other.

This was another volunteer and his dog.  .........I loved this......Connor enjoyed watching the dogs eating treats.

Our little stinker.  A hospital stay that was just about getting you to gain weight was pretty easy on this little guy.  He wasn't required any meds beyond what he normally takes (and well, one medicine was changed) and after the first couple of days, I was allowed to disconnect him from monitors when he wasn't really sleeping.  He was connected by his g tube for nutrition most of his stay and by the time he stopped losing weight and started putting it back on, he was atleast taking a little bit of bottle each day.

When he was still losing weight versus gaining, he was big on cuddles.  No complaints here.  I know my mom said she would have loved to been able to come volunteer for that position of official baby holder..........pretty sure we have more family that would of loved that.

the first day or two he was just a sort of zombie.  Once he was hydrated, that ended.

Now that we've been home a few feels much less dramatic.  He has appointments set up for a dysphagia clinic (eating clinic) and a separate GI appointment.  We should hear something soon about his next surgery to replace ear tubes and clip his tongue.  Because he probably had a virus, the surgery may be putting that off for a few more weeks........Connor is now just over 19lbs again.  He dropped a diaper size even. other news, he had his Early Intervention assessment the other day and we decided he had no major physical or mental delays.  Obviously he has his medical issues but beyond that, he's developing at a nice rate.  ....we (early intervention along with Mikey and I) did decide to go ahead and teach Connor sign language.  Sometime in March, we'll start having weekly lessons.  We made it known that we'll not be that family that stops talking a few hours in the house each day to teach him signing.  (apparently, the normal way of teaching sign is a no talking rule a few hours a day and only signing is used in the home).  ...our situation is unique in that Connor can hear but there is a fear of progressive hearing loss.  Within a 6 month time frame, Connor is already needing his tubes replaced and we fear that the tubes are going to be a problem for some time.  He's already supposed to get hearing test every 6 months due to his anatomy and we've come to believe learning sign will leave him with a second language and open to making his own choices as he grows older and possibly faces progressive hearing loss.   .....anywho, no worries on that front.  We truly have embraced dealing with problems as they come along.   .........right now, he's doing well.  The situation at hand for medical needs being met at home has become routine again.  .........and being home is the best.

....until next time!

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