1 year old and more

Happy Birthday Brody Mann! My special little guy has turned one! Such a bitter sweet moment. I can't believe that he is already one and I am so very thankful for this special birthday. With EB, you never know what one day to the next is going to bring. So many babies and children die at such a very young age from this horrible disease, you really do live in the moment and you're so very thankful for each day that you have. We have been so very lucky during this first year...much luckier than many other families that have dealt with EB. The fact that Brody has made it through this first year with just a couple of very minor infections is amazing in itself! <> He is so very strong...and stubborn...and hard headed...and did I say stubborn?  :-) Here is the last year in a few pictures.

Brody isn't walking yet. And he's never crawled...to be honest, I doubt he ever will crawl and I suspect it will be at least another 6 months before he walks. I mean heck, he's not even standing yet. His left leg and foot are still pretty bad as far as wounds go, I would imagine it hurts pretty badly to try and put pressure on them. He will tolerate standing for a few minutes at a time, but that is about it.

He is waving bye bye a little bit and says momomomomomomomomom dadadadadadada  and  byebyebyebyebyebyebyebyebyebyebye all the time. He loves to play "Where's Brody?" and will lift his blanket up over his face and slide it down really slowly and peek around with one eye and then pull the rest down really fast. It really is too cute.

At his 1 year check up today he weighed 20lbs13oz and was 30 1/2 inches long. He's getting to be such a big boy! He grew 3 inches from his last appointment which was the biggest jump from each appointment to the next one. The doctor said this was probably an abirition (meaning he probably won't grow so fast in such a short amount of time again). He did have to get 3 shots today. He cried pretty hard for about 1 or 2 minutes but then he was okay after that.

As I look back on this first year, it really is hard to decide if it has gone by fast or not. I mean I really can't believe that he is already 1 and entering into toddler world but at the same time it is hard to remember what life was like before 2hr bandage changes, large boxes full of bandage supplies sitting in the living room, smelling either like vinegar or bleach after giving him a bath, feeling like I always have aquphor on me some where. I do hope I get better at managing my time between things: house work, Makenna, Brody, teaching, me time. Right now I'm just exhausted all the time, the house looks like complete trash, I'm pretty sure Makenna is being neglected way more than she should, there is no me time, I've still managed to keep my ECA scores up at school but I feel so unorganized it isn't even funny, and Brody is at the center of it all. I am soooooo ready for summer break. I didn't really get one last year with everything that was going on: Brody was in the NICU for the first 4 weeks I was off work, he was home for 2 weeks and then I had to take my last two classes for my plus 30 the next almost 3 weeks, and then about 3 weeks later it was back to work. BLAH!

Makenna had her Kindergarten celebration at school today. It was a cute program. All three classes joined together and sang a few songs for us and then we watched a slide show of the kids over the year. I can't believe that my little girl is going to be in the 1st grade come August. She is so very smart but will only do what she wants when she wants and never shows anyone really how smart she is. She is also hard headed and stubborn (hmmm...sounds like someone else I know). I'm hoping to also get her into more of doing "chores" around the house this summer and working on skills she'll need for 1st / 2nd grades. I need to get a better camera...all of my pics from today were blurry.  :-(

I promise over summer to blog more and maybe even go back and blog about things I've kind of skipped over.