Interesting

So I was looking at a lot of Emmy pics, all of them from 2009.  It was a great way to spend time with Emmy while Jeff was out tonight with a friend.

I started to think about Emmy's blue spells and blue spots that she had sometimes.  I think I have only noticed them since late June, but nevertheless.  It made me start to think.  That is always dangerous. :)

In a couple seconds I think I may have stumbled across a possible answer for her blue spots & spells.  It would also explain her breathlessness a year prior (2008) where we thought that maybe she had a heart issue that was causing her to breathe so heavy and sweat so much, etc while having OT and PT.  It would also explain a few other mysteries from June to Dec 2009.

Methaemoglobinaemia, say what?  Is that even a pronouncable word?

I will be calling Dr. Shore on Monday.  He said to call him in two weeks and it will be exactly two weeks anyways. :)

I will not be happy if she had this because it means that we could have possibly saved her life.  However, every thing happens for a reason and it is planned out and allowed by God.  I know that if we are meant to know what was going on inside of her body then it will be what He wants us to know.  If not, I will have to just be ok with it.  He knows best for me.

Here are some pics that my dear friend, Tricia, found and sent to me today.  Also, we are pretty sure that Emmy had breakfast with her daughter, Katie, this morning.  I'm almost positive that is why Katie was saying Emmy all morning during their breakfast.  I know this was Emmy because they had Cheerios. :)  Emmy would do ANYTHING for even just one plain Cheerio.  Love you Emmy!

http://www1.snapfish.com/share/p=595191269025625027/l=4901206016/g=1170188/cobrandOid=1000/otsc=SHR/otsi=SALBFB

Happy St. Patrick's Day

Well, I surprised myself today.  I did put myself, Kara and Anna Grace in green attire today.  It was fun, but not as fun as last year.  So much can change in a year.  It's so unreal.

Last year, all three were dressed in their green and oh so cute.
http://www.flickr.com/photos/corriganfamily/sets/72157616735944114/

Love you Emmy!

I am away at a Scrapbook event in Middle GA.  Paper Crafter's Extravaganza.  Anyways, I was strolling through the vendor area and stopped at a booth that sells wooden rubber stampers.  I was looking at them and just couldn't figure it out.  I kept looking and reading and looking at these packages.  It was finally starting to set in that you buy a wooden stamp and then buy these other pieces to customize your stamp.  Then I looked back at the original package that I was initially curious about and as I was putting it back on the rack (Jeff would appreciate that) something caught my eye.  It was the name Emily.  Then I read the stamp on the package and it read "Love your Daughter, Emily".

It really shook me!  Weird!  The reason that I'm so weirded out is because I picked up that package a few times and put it back.  I even walked away and something was drawing me back to figure out those stamps.  I had realized that those on that wall were all blank rubber stamps, but I kept picking up the same one.  When I read Love your Daughter, Emily I know Emmy is here in Middle GA scrappin in heaven and wanted to let me know that I should go back to my table and finish her baby album. :)

Love you Emmy, your mommy!

3 Months is way too long

It has been a long and horrible 3 months.  I say horrible because we don't have Emmy with us physically and it hurts so bad and so deep that I cannot describe.

As I look back on the last three months.  Things here are very different.  Our house is cleaner and neater.  We have time to just sit around and do nothing.  I socialize more than I have since I moved to Atlanta in 1998.  All this is fine, but I don't want any of it.  I want it all back the way that it was.  I would rather have my family split in half here and there than to have one missing constantly.

I, honestly thought that I would slip into my bed sheets and never come out.  I have surprised myself, as I have surprised myself before after Emmy was born.  I stepped up and didn't let it get me down.  I have let this get me down, but I'm trying so very hard to push through the thick brush and I am working on paving a path for my family and I to get through to the other side.

I have told some people lately that I realized that I can't be that mom where 10 or 15 years down the road my daughters come yelling and screaming telling me that I need to get over Emmy because she's not here and they are.  I know that it's only been three months, but I really feel that with such young children, I need to step up now before I start some hellish ball rolling.

So I have been working out, getting a charitable org off the ground, volunteering with the Down Syndrome Association, working on a website called emmysvoice.com, and writing things here and there, and most importantly of all I've been spending time with my kids and focusing on what they will need 6 months from now or next school year, etc.  They are here with me now and I need to set an example to them that dying is ok.  I really believe that it is, but I wish it wasn't so devastating to me to deal with it.  I hope that Jeff and I set an example that it doesn't have to be so devastating.  I want my kids to feel like they can move on from disastrous events and horrible trials.

I had a really great thought for a children's book earlier today, but I totally forgot what it was.  But since my mind is on Emmy and writing I will post a little thing that I wrote a while back to apply for an online writing gig.  I have no real writing experience so I apologize if my thoughts are not well put together. ;)

A Different and Perfect Perspective (Copyright 2010 by Amy K. Corrigan)

I was sad the day that I found out that Emmy had Down Syndrome.  Why was I sad?  I do not know.  I could not pinpoint the reason.  Maybe, it was because I now realized that her life was going to be different from what I thought it should be.  Why do I have set ideas about how my baby’s life should be?  I guess we are trained in some way to want the American Dream or the Perfect Baby.  What is perfect anyway?

In living this new life, which I was now thrown into, I have found that perfect is more of a state of mind.  I feel that my life is perfect on many occasions.  I watch my girls singing and laughing in the van while we drive to and from therapies and preschool.  That is perfect to me.  I see Kara doing “therapy” with Emmy and showing her how to do things then clapping and rejoicing when she does them.  That is so perfect to me.  I see Emmy stroking her little baby sister’s hair while sharing a stroller.  That is just so very, very perfect!

I have decided, each day, to realize that what is perfect to me can never be the same for someone else.  How could we all have the same perfections in life?  If we did, then how would we ever feel special?  I need to feel special and unique.  I am jealous of Emmy because people can just look at her and know, from her Down Syndrome features, that she is so special.  For myself, I have to work so much harder to prove to others and myself that I am special, in my own way.  On the outside, I look so much like everyone else.  How can I stand out today?  I want to be different!

It is comforting to me that having differences is so very normal.  So if it is normal, then why are Emmy’s needs called special?  Kara has very special needs, too.  Kara is smart and is learning to read now, but it is special and important that she, too, reaches her full potential.  That being said, I need to take her to Book Club at the library and take her to music class, too.  We tend to see those differences that seem to be negative so much more substantial than those that are positive.  Really, they are the same.  They are all special!

Can we change those preconceived notions that society holds for all of our children?  Yes, we can.  It takes a positive attitude and a ton of persistence.  It is so doable.  We can all be productive and healthy members of society.  We just have to accept that we hold a significant role in that society, every single one of us.  We all bring our own specialness to the world and we should embrace that and celebrate it.  We should stand tall and hold our heads up high and tell everyone that we matter and that we are unique in our own special way.  We are who the world is!

New cause of death/diagnosis...

So today, Jeff and I met with Dr. Rapkin & Dr. Petrillo at CHOA Egleston PICU.  It was an hour long meeting.  I am so thankful that they took the time to talk with us and answer all of our questions.

They began explaining all the testing that they did to confirm HLH (her rare blood disorder).  I will not bore you with any medical terms.  Basically, they found no cellular evidence that she had HLH.  She had a genetic mutation with the MUNC gene, but that particular mutation has never been found before and therefore we don't know about how it affects her health, if at all.  There are only a few mutations on the MUNC gene that they know of that are related to HLH cases.  Being that her's was not a part of that and she had active and present NK cells, she did not have HLH at all.  They found no infections present anywhere, except for her T9 vertebrae.  We do not know why her abdomen was so distended, why the rash on her chest, why the difficulty breathing for so many months.  All in all, her body showed clear signs of distress, she was in heart failure before she transferred to Egleston, but it improved while on ECMO.  She was suffering from Multiple System Organ Failure.  We may never know why Emmy's body couldn't keep fighting.  I want to know the answers and I may not rest until I do find them.  I want to know why???

Sweet Emmy fought such a good fight to the bitter end.  She is my hero!  I am still proud of everything you did and are doing even after you've gone to Heaven!  We miss you terribly Baby Goose!

Video of Emmy...
http://www.flickr.com/photos/corriganfamily/3528821012/in/set-72157618003393631/