Here it is... an update:)

I know, I know, I know!!  I'm a total slacker!! But really... sometimes even blogging once a week I feel like a broken record because it's always the same things (though I'm not complaining, because things could get worse).  I just don't want to bore you guys:)  My sweet angel is still fighting hard each day.  And as much as I can say that he's playing and being a little ham- he's also suffering, in pain, and struggling to breathe.  He really is the true definition of a fighter.  His breathing has been all over the place lately.  One day he is really junky and the next he's as dry as can be and struggling just to get air in.  He's still getting oxygen at night and I think that is helping him sleep a little better.  But during the day, he will stand up and play for a few minutes and then know when it's time to lay back in the rocker and get his "air."  Yesterday he hit his finger on a toy and I didn't even know until I saw a huge blood puddle on his table.  It looked like a murder scene.  And he didn't cry or even miss a beat.  That's how amazing he is. 

Starting the bath process is almost like a "walk down the plank."  He can see everything set up and he just "senses" when we are about to pick him up and put him on the table.  I think he feeds off of my anxiety too because it's so indescribable to watch.  Once he's out of the tub, he is okay.  Unless of course if he is tired and frustrated.  But most of the time, he is a little angel in the rocker to put his bandages back on.  Putting the bandages back on is actually one of the funnest times that we have with him.  Because he's so relieved to be out of the water, clean, and not wrapped up.  He does some of the cutest things at that time. 

His little bottom is so raw again.  It looked better for a while, and now it's back to being two big raw cheeks.  Every one of his sores at some point starts to look better and then takes a turn for the worse.  The sore around his feeding tube is the only one that is consistantly looking better with each dressing change.  But he is still starting to get more and more new blisters from the pressure of us lifting him and also from the weather getting hotter and hotter.  The sores around his neck are at their worst right now.  They are big, draining and get stuck to all of his bandages.  I've tried so many different ways to keep it from sticking, but he either pulls stuff out or the dressings move around.  The words and pictures on this blog say absolutely nothing about what goes on in this house and what my little boy goes through on a daily basis.  There is no way that words could express what I'm watching him go through each day.  Yes, he plays.  But he also copes with no eyesight and with extreme pain.  I just think about every time we pick him up and put pressure all over his sores.  Or hold him on our hip putting pressure on his bottom.  That has to hurt SO bad.  But he's used to it.  It's so sad that he's USED to being in that much pain. 

But when he stands up to play lately, breathing trouble or not, he's like THE master clown. It's hilarious and fills my heart with SO MUCH JOY to see him play. The way that he is coping with losing his vision is just incredible. His other senses are just taking control and he's functioning so well with his toys. However, he doesn't want to leave his little "comfort" zone because I think it makes him nervous that he isn't aware of his surroundings. He won't ride his car anymore or doesn't want to get in his walker. Probably for that reason. When he's in his little spot... he knows where he can walk, where his toys are, where we are, etc. So he's "comfortable." And that's all that matters. He doesn't really know what he's missing out on... only we do. He's happy with where he is and what he has now. He can say tons of words in sign language and we try to teach him new words all the time. But his head is harder than a brick floor, so it's only on his time. He plays us like a book and has us wrapped around his tiny raw fingers. It's hilarious actually sit with him and watch how he KNOWS how to play us... by being a little drama king and throwing a fit, we give in, then he immediately smiles the cutest smile in the world.

OH- I forgot to tell you the cutest thing he does... Grammy taught him how to "hold his breath"- don't get nervous... he's very smart. So when you say, "Don't you hold your breath!" (because everything has to be said that way for him to do anything cute- don't judge, I am very aware that I am creating a monster and I don't care), he takes his cute little pointer finger, and blindly tries to find the opening to his trach, then stops it up with his finger for probably less than a second (long enough to know he's doing something different) and then cracks up laughing at himself. It's so darn precious. And lately, he's not just smiling at us when he's happy... he's been giving real belly laughs, where you can hear noise from his trach.

 I'm open to your questions again...  or somethings in particular you would like me to blog about.  And thank you to everyone who send e-mails and messages checking in on us.  Sorry it took me so long.  

Hope everyone has a great week :)

And I hope this little cutie below makes you smile!

Love,