Josiah’s Update

People ask me all the time how Josiah is doing and since we had a recheck appointment at Shands today, I figured I’d give an update. 

I interspersed some recent pictures to make it more interesting :)

This is where my poor baby tripped and fell into the corner of the wall and cut his head, chin, and toe.  This is the morning after where it is cleaned up and the immediate swelling and redness is gone.  There were lots of tears to go along with his goose egg.

For the last six weeks he has been on Miralax to soften his stool.  He is no longer miserable (and therefore we are not either!), but that is only true as long as we keep him super loose (TMI? sorry).  As soon as we decrease the dose a little to get him more manageable, he starts back with his original symptoms.  So frustrating!  We feel sorry for the little guy.  He has, at least, had a wonderful growth spurt and is higher on the growth curve than he has ever been and he seems more energetic.

He’s bound to get a few more goose eggs!  He loves his swingset fort!  He seems so little to me on this ladder.

Isn’t he cute? 

So, as I said, we went back to Shands today and were hoping to relay this progress and all our concerns/questions to the specialist, however, the nurse practitioner saw us instead.  Now, I’m a fan of nurse practitioners, don’t get me wrong, but I’m so tired of having a lack of continuity of care and speaking to people who don’t know his symptoms and history.  The visit started off extremely frustrating, but ended ok when I think she finally sensed our lack of confidence, frustration, and concern and she sat down to get to know more and give us some answers…finally.  Anyway, I won’t get into all of our frustrations and instead just summarize by saying he is to remain on the Miralax at least for the next 6 months, or maybe indefinitely.

We don’t exactly feel like we are making progress and are concerned about where this will leave us in the future, but hopefully time will heal.  In the meantime, I’ll have the chance to discuss it more with our pediatrician next month.  It would be nice to know the cause of all our troubles, but she made it clear that no matter the reason, Miralax is the solution.  I guess it is the cure all – actually she called it the miracle drug.  Let’s hope it works miracles for Josiah.

On another Josiah note…

Post nap time snacks!  Only the cool can partake.  See him baring his teeth?  He’s actually saying “cheese”.

Yesterday we had a playdate with some friends from church.  We had 4 moms and 10 little boys five years old down to 2 months old.  Whew!  We had a 45 minute ride home in which I diligently kept Josiah awake by giving him new objects, a snack, and pointing out interesting vehicles.  All this in hopes that he’d take his typical 3 hour nap.  Well…sleep or no sleep, 45 minutes in the car was enough to get a second wind – for him, not me.

I put my star sleeper down for his nap, but since he was noisier than normal I checked on him to find he was soaked from a diaper leak.  I changed him and put him back down, checked on him again and sternly laid him down and told him it was time to sleep.  I didn’t hear anything, so I checked again to find him cradling the bunny “wabbit” he has in his crib from his Nana.  He was holding it so sweetly, rocking it, talking to it, and just being so loving.  Then he put it down, placed the blanket over it, and told it it was time to sleep.  So sweet!  This went on for awhile.  What could I do but walk away and hope for nap success?  Well, it didn’t work so I ended up putting BOTH him and the wabbit back down together, then later confiscated the distracting wabbit.  Then in one last ditch effort I read Josiah one more book and went through our nap routine again…to no avail.  He wasn’t going to sleep.  Well, at least he stayed in bed for 2 hours and was reasonably happy doing it.  Can you say early bedtime?

 

After his appointment today we wanted to get him something for being a good boy.  We had to go to Walmart anyway, so we were going to get him a toy.  Well, he’s been fascinated by Jacob’s hats and didn’t have one of his own to fit, so we solved that problem and got him two.  He loves them!  He had so much fun snacking in his hat that I had to post several pictures. 

 

  

I LOVE that little guy!