Post and Pics

Hi there.  Just waking up and I figured I would try and write before little one wakes up.  He gets his best sleep between 8-9 in the morning.  I have no clue why.  I'm still suctioning all night.  I've come to the conclusion that I need to put him on the humidifier at about 5 in the evening and give things an opportunity to break up a little earlier.  That way maybe he can get all the secretions up a little bit BEFORE bedtime.  I've thought of this before but it's a little easier said than done.  But if it will help us sleep, it's worth a try.  I'm thinking now that I might look in to getting someone in the house to help with getting bath supplies ready and getting his bed ready at night, or just helping out around the house.  I'm going to try and make some calls today to see if that's anything insurance will cover.  I know a nurse is not going to want to come in and just "help around the house."  I don't want someone who would come in and suction, or do the actual bath... just help get things set up.  If you read the blog comments that people leave, another EB mom was nice enough to let me know that she had someone in her house just for those things... she still BATHED and did all the dressings... but she just had someone who would help her get things set up.  And don't get me wrong... I have my mother here everyday and I can finally get stuff done when she is here.  But if I could get some OTHER things done, instead of bath and bed... that would be great too.  It just a thought... no promises :)  But the nights ARE a little tough.  We will have a good night, which is getting up about every two hours until about 5-6, then about every 30 minutes after that.  Or we will have a really bad night which is getting up about every 30 minutes... and sometimes maybe getting an hour here or there.  Don't worry, when I get to where I just can't go anymore... I'll get some help.

Everything with the house is going great.  There are a few things here and there that we have to do, like touch up some paint, put in baseboards around the shower.  But everything is finally functional, and it sure feels great.  I still don't have everything ready for his playroom, but yesterday we put him on the rug and put all of his toys around him and he was in heaven.  I really think he is going to like it.  And I certainly like having the extra space instead of shoving his toys either in the living room or between all his dressing supplies.  You should see that supplies that come in for ONE month for this child.  There are 2 HUGE boxes of stuff that come once a month... then that's not including all of his other supplies, like the humidifier stuff, the suction stuff, the feeding tube stuff... there are boxes everywhere.  I definitely have a lot more storage than I used to, but those boxes still drive me crazy.

Yesterday Grammy (my mom) made the big 50!!! Can you believe it?  She looks better than me.  I know, it's sick.  We had a small little get together here for her.  It wasn't what I wanted... I wanted to throw a big surprise party, but it was just impossible right now.  So maybe for 55 or 60... (you won't know which one, so it'll still be a surprise, Mom.)  But she said it was just what she wanted.  I made a really hideous cookie cake, and we BBQd and ate a lot.  It was nice.  Happy Big 50 Grams!!  You look darn good.

Randy is coaching a basketball team this year... 9-10 year olds.  He loves it.  He gets so attached to those kids.  You should hear him talk about them.  Anyway, they had the end of the year play-offs this weekend.  Saturday, he brought the whole team over... (Don't worry, they all washed their hands and stayed their distance from Tripp... except for the picture.)  He wanted the team to meet Tripp so they could have some motivation for their games... They all said they were going to win for Tripp... and they won three games that day!!  It was sweet.

Thank you so much for the prayers... and can you pray for little Jonah too.  His little man parts are blistering and it really burns him when he urinates.  I know it has to be so hard for Patrice and Matt to see him in pain every time he urinates.  For all Tripp has going on, most of the time he is smiling and happy, which is amazing, I know.  But when he is in pain, like he hits his little finger and it starts bleeding everywhere, or when I can tell his poo-poo burns his sores on his butt... it is so hard to see him in such pain.  So please pray for Tripp and Jonah... and all the EB babies that have to suffer from the normal things that happen in life, like going to the bathroom, or just playing with their toys and hitting a bo-bo.  Jonah only has one month left until he turns a year old!!  You beat those odds, buddy!!  We are right behind you!!

We have another appointment with the eye specialist tomorrow.  He now has what looks like the same thing starting in the other eye.  So I'm thinking that surely he is making blisters by rubbing.  I'm going to ask for maybe some steroid drops to stop the itching and the pain.  Hopefully that have something like that for his age.  So I will let you know how it goes.  Thanks again for all the support!!

This is his orange... well "bright" orange mitt chair we bought for his playroom. 

He loves it. 

Here's the team!!

 Tripp was infatuated with so many boys at one time. 

Grammy's cake...

Here's what we've been working on... well, twice. 

He doesn't love it... but he's getting stronger.  

He can only stay this way for about a minute until he gets upset.

And we've been trying to get him to put some weight on those feet! 

This only lasts about a minute as well... BUT, it's progress.

My Man...