Adios 2011!

Merry Christmas and Happy New Year! <3 Caleb & Lalo

Well I suppose now that the holidays are done, I can't use that as an excuse for not blogging.  I promised myself I would share at least one little update before we wrap up 2011, plus I will share a picture of these two cute distractions.

Things have actually been fairly mellow around here.  Lalito was still throwing up and refluxing even on J feeds.  He has had a few GI tests, but they didn't really give us much in the way of answers - just that he has a small stomach and somewhat slow emptying.  It has basically come down to us trying to figure out how/if we can move forward.  We made the decision to start using the G tube again, so that his feeds are going into his stomach.  So far we have been doing G during the day and J overnight, to minimize the risk of him throwing up in his sleep (really in our sleep is the issue). We have also been including small amounts of blended table food into his diet.  And then we are very, VERY slowly increasing the rate that we are feeding him so that he will get more breaks in the day.  The past week or so he has been ok, still throwing up a handful of times a day and arching a lot, but not absolutely miserable.  We feel like we have a couple of options left to try, and if we don't see any results we will probably start seeking 2nd opinions from other leading east coast hospitals (or further if need be). 

Lalo had also been having some issues with his right shoulder and balance following his surgery this fall.  His therapists thought possibly his shoulder was subluxed or dislocated.  Also, when we were fitting him in a new piece of therapy equipment, they thought he might have a slight difference in the size of his legs or also possibly a hip subluxation.  However, we saw an orthopedic surgeon in the beginning of December and based on his exam and xrays he said Lalo doesn't have any of these issues.  He also didn't see any signs of scoliosis, which can be quite common in cdh kids, as well ase kids who have had strokes.  We also got the all clear from the opthomologist to wait another nine months before coming back.  He does have some issues with his right eye floating a bit, but he wants to just see how the brain rewires to see if it corrects itself.

Lalo is really making some progress with speech.  He has about 10 words and has figured out how to tell us he wants something.  We are very anxious for him to gain some type of mobility.  He can roll, but doesn't often.  I think part of this is that now that he can sit, that is the position we have him in most often.  He can't transition himself between sitting and lying, so we have to decide at any given point what position he's in.  I think it will be so huge for him when he can decide if he wants to be sitting or lying, on one side of the room or the other, kitchen or living room, etc.  He has gotten two pieces of therapy equipment lately - one is a stander that basically straps him in frankenstein-style to put him in the standing position and get him weight bearing on his legs/feet and the other is a gait trainer - that is similar looking to a wheelchair but he stands instead of sits and we can wheel it and help teach him to use his legs to move. The poor guy also has his molars coming in right now.  He loved the wrapping and tissue paper this Christmas the most.  If only gift bags were full of calories...

Caleb is doing wonderful.  He speaks in paragraphs and we can have great conversations with him.  He is growing an inch a night it seems like, I'm not quite sure what happened to my little tiny baby boy.  He is a wonderful eater, often Lo and I exchange the "holy crap - this kid is going to eat us out of house and home one day" glance across the dinner table.  He also convinces us to read about 17 books a night to him ;) He really enjoyed this Christmas season - he loved looking at the lights, was so proud that he got to put the star at the top of our tree, and he nicely tolerated my obsession with Christmas music.  We still have a pile of presents under our tree because he is a dedicated player... he opens one gift and could care less about opening any more because he wants to play with that one for two hours. 

Oh what a year it has been! Plenty of good, but our fair share of bad too.  I think I can definitely say we are looking forward to the new year.  With any luck, I should be headed back to work part-time in the next few weeks and that will be a whole new chapter for us.  We have plenty of resolutions for the new years, but for tonight we are focused on overeating and laughing with some of our good friends and their kiddos. 

May you and your family have a blessed New Year!