Sunday, August 26, 2012

Blogging Vacation and a Diagnosis.

I don't even know where to begin.  I've been in a serious rut.  I haven't blogged, baked or done very much sewing.  I hate that, but I just can't seem to find the energy.  Hubs is still working obscene hours to make ends meet.  I'm on a two week hiatus of babysitting Mason while both of my kids are home for the last two weeks of summer break.  Its been a nice break, but I miss the money! LOL  School starts again on the 5th for Emily and the 6th for David.  

David has been giving me a serious run for my flippin money.  Its been an intense power struggle over the last few months, and it seems to be escalating.  I'm at the end of my rope, and I'm pretty much willing to do anything to get this kid back under control!  Bed time is the WORST!  I have to start early every night because I know its going to be 20-30 mins of back and forth with him.  Someone just recommended 60 mins of quiet time before bed(no tv, video games, ipad, etc).  I'm going to attempt 30 mins to start and see how that goes.  Its so hard being on my own @ bedtime 5 nights out of 7.  

Emily has been doing well.  She loved her summer session...she loves school...and that makes me relax.  In June she had to have some dental work done.  She had a massive cavity that I never even knew about because she won't let us look in her mouth very often.  Have you ever been bitten by a 6 year old that has super human strength?  Its no picnic!  Anyhoo, we took her to the dentist for the first time...and I had no idea HOW he was going to get a good look...but he was fantastic!  He got in there just enough to see what he had to and decided it would be our best bet to put her under general anesthesia to have all of the work done.  Well, the next day, the monster cavity decided to rear its ugly head, and the whole left side of her face was swollen!  After and seriously traumatizing trip to the oral surgeon, that was taken care of.(seriously, we've been through a lot of stuff with Emily, but this ranked top 3 worst experiences EVER!)  About a month later she had the rest of the work done, and she's good to go!   

In other Emily news, after many tests, and even more trips to clueless doctors, she has a diagnosis.  She has what is known as, Chromosome 15q Duplication Syndrome...or "Dup15q".  I was a little sad a first, because the genetic counselor couldn't really give us much information on it.  I felt as though we were still in the dark.  It is very rare, but other kids have presented with similar duplications and symptoms.  I went right home, and consulted with Dr. Google.  I found the Dup15q AllianceThere it was, right in front of me...a home for Emily...somewhere she would finally belong.  In that moment, my sadness lifted, the clouds parted, and a sense of relief washed over me.   Through their facebook page, I have been put in contact with families all over the US, and the world!  I do not have an exact number, because surely, there are kids and adults walking around that have not yet been diagnosed, but we're talking less than 1000 affected worldwide at this point and time.  Its rare.  

I feel I have a new sense of purpose.  This is what I'm supposed to be doing.  Educating, and spreading the word about Dup15q, and kids like my beautiful Emily.  Everything is starting to fall in place.  I feel my confidence rising, and my energy slowly coming back to me.  It won't happen over night, but I'm getting there.  I still miss my hubs, David still exhausts all of my emotions at bed time, and everyday has a new struggle.  However, I have decided to bring more positivity into my life.  For a while, I was full of negative energy, but I have consciously decided that I must allow the positive in, and let it take over.  Yes, some days are hard...but every moment is a chance to start over.  

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1 comment:

  1. Sometimes just having that name gives you a starting point and some kind of foundation on which to stand and get to work. I'm glad you know!

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