Dec 25, 2010

What's in a name?

Guess who can say his name?

That's right!  Manny.

For the longest time I was Mama and He was Mamma.  You ask him his name and he would point to himself and say Mamma.

This week, he finally learned to say Man-Knee!  Like a pro.  I'm trying to capture it on video but of course he sees the little red light (even out of the corner of his eye) and shuts up.  Instead, he says "Cheese" and holds still!  LOL

He has done this for a while too and don't think I've mentioned it.  You ask him how old he is and he holds up one finger.   But he says "Two".  I think he's confused because you say "One" and then he holds up his finger and says "Two" (the next number).  But either way it's cuteness.

Another cool/funny thing that happened this week was in regards to his serial cast.  They had an orthopedist come in on Monday and do 2 molds per foot.  (He did NOT enjoy that as the procedure is just like the casting procedure which he hates.)  Why 2 per foot?  1 mold is for the day braces.  1 mold is for the  night braces.

Then they proceeded with the casting for the week. These are all supposed to last one week before they're cut off but he's only been lasting about 3-4 days before his feet slip back.  Once the feet are out of position, it puts too much pressure on one spot and his feet get horribly swollen and even have skin rub off.  So we have been doing the put the casts on Monday.  Take off Thursday.  Nothing on until Monday.  Reverse the days for the next week.

We would mark where his toes were and if they slipped more than 1 inch backwards, we would have to cut them off.  Usually the slipping process would take 2-3 days.

They decided they would try a new technique to help him not slip out of them so quickly, hoping they would last until Wednesday.  They would cut them off the day before his surgery (not foot related) and that is the day his night braces would be ready.

Great plan.

Except Manny clearly got a different memo!

Thursday morning casts on.  Thursday morning I checked his toes and couldn't even find them.  We're talking a good 3 inches already. That's the fastest they had slipped.  So I called the casting team and decided I had to get in immediately.  They would just cut them off and not recast.

I got dressed for the day and went to pick up Manny.  I heard this THUD.  Sure enough ... his right cast has just fallen OFF!  I tugged (lightly) on his other cast but it was on pretty firmly.  I wasn't going to hurt him by pulling it off.

A few minutes later, I heard THUD.  Sure enough ... the other cast had fallen off!  I consider this a HUGE gift.  First of all, this saved me about 2 hours ... drive there, cut cast off, drive back.  PLUS it was the merciful way to come off.

He was laughing REALLY hard.  I have no clue if he understood the whole thing, I think he was just happy to have those things OFF!

Finally, he's been having a rough, rough night for the past 5 nights in a row.  He can't stop crying.  He tries but he's just miserable.  During the day he controls his attitude nicely but at night, it just gets the best of him.  I'm exhausted.  Dan's exhausted.  Baby is exhausted.

This morning he woke up with a HORRIBLE diaper rash.  His pee must have burnt his skin (this is new) and it was .... (TMI alert ... if you would like to skip, go to next paragraph).  ... oozing blood.  Eventually today, it was actually leaking blood.

I can't imagine the pain that must be.  We've slathered him in all I know to put on him.  Changing his diaper OFTEN.

I told several people about it and asked for prayers and wouldn't you know ... the symptoms aren't gone yet but I have by sweet, happy baby back.  We're hoping for a good night sleep tonight.

During all this, he has been doing a LOT of "retching".  I think it's like the flu and since he can't throw up (due to the fundoplication), he can only retch.  It takes his breath away and he literally cannot breathe.  We have an emergency kit nearby to help relieve him of the problem.  The past 48 hours, I've had to do it so many times I can't count.  (Usually less than 1 per month.)

We were even sitting at a fancy dinner Friday night and he did it.  I did the procedure without even thinking about it.  Then later, realized just how "odd" this must look if an outside person was watching.  People would actually even feel sorry for us, for him.  And that's sooo not what I want them to see.  Yes, we have unique and different things in our daily routine than most families.  But I wouldn't change it for the world.  Don't get me wrong, I would love for him to be healed completely ... but I don't sit around and mope, praying for a different life in the meantime.

I love my life.

1 comment:

  1. He is making such wonderful progress, isn't he. I love that he can say his name.