Wednesday, August 3, 2011

Random thoughts and videos...

This will be a pretty random post, because I have a few things to write about and they are all kind of unrelated.  But I haven't blogged "just because" in a while, so I figured it's overdue.  Even though it is 11:00 at night and it would really behoove me (my nursing instructor will be so proud) to get some sleep- since that hasn't been happening too often.  O well, I figure one day I'll be able to sleep.  It's overrated, anyway. 

So, I know it's still far away, but I've been trying to come up with some ideas of what I can do for EB Awareness Week.  It's not until the end of October (the 25th-31st)- but I want to do something special.  Something that really brings attention to these babies who endure so much pain every minute of their lives.  I was staring at my little man today (like I do most every day) and just thinking about HOW much pain he is really in.  It's unfathomable.  And not just the pain- but that fact that he has lost his eyesight, he can't speak, can't eat, has 20 teeth that he can't brush, etc, etc, etc... I could go on and on.  
I'll say it again- these children deserve a voice.  And just because this disease is SO rare, doesn't mean that it shouldn't be well-known.  I honestly think it's the most cruel disease that I've ever heard of. 
So, as always, I want your input, thoughts, ideas, suggestions on what I should do for this week.  That way I'll have plenty of time to work up a great week of "EB Awareness."  It's going to be all about what YOU guys want to know and learn- so please, if you have any ideas, leave them in a comment or e-mail!

So I want to give credit where credit is due, and I can tell you that my sweet "saint of a Momma" doesn't get enough credit.  She has completely picked up the slack and has been by my side, helping me to raise my son 24/7.  She has never complained once about her life being flipped upside down.  It is very safe to say that neither Tripp nor myself would have survived these past 2 years if it weren't for my mom.  The main words that I hear daily from her mouth are "what can I do to help you?"  And yes, I realize that she would not have it any other way than me to be here where I have the help that I need... but it's still a sacrifice for her.  She's already raised her children- I'm sure she didn't plan on raising mine, too.  And also for my sweet Daddy who never complains when I steal his wife day and night, or when nothing is cooked for dinner, or his clothes didn't make it to the washer because we were washing 100 batches of Tripp's blankets...  I just feel like these sacrifices that my parents have made for Tripp and me might sometimes get overlooked, especially by me.  So I want to acknowledge them.  And I'll probably get a "why in the world did you put that in your blog?" from both of them... but I don't care.  They deserve for everyone to know what they are doing for us.  I hope they both know that I think they are the best parents in the enitre world :)

On to the next... There has been a good number of people asking me if I know about the bone marrow transplants going on in Minnesota.  I definitely do.  I have followed many of the children's stories who have gone through the transplant.  I know this is a difficult thing to understand if you aren't familiar with EB.  Most of the transplants that are being done are on the children with Dystrophic EB.  Tripp has Junctional EB.  The majority of the children that do well with the transplant are usually older children.  The children that I have watched through the transplants were under the age of 2, and the risks far outweigh the outcome. Tripp is not at a point where he would even be healthy enough to go through with the transplant.  It is a very brutal process.  I know that the brilliant and amazing doctors there in Minnesota are working hard to perfect these transplants and to help these kids.  And maybe one day this will be in our future.  But it's not today.  

And last but not least, I was looking through the videos on my phone and found some that I had taken within the past few months, but had never posted.  They are pretty short, but made me smile.  I hope they make you smile, too!  
I never realized how much I loved watching him stand to play until now that he doesn't play anymore :(


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