Macy

Macy

Wednesday, June 20, 2012

One last hurdle...well kinda

So we have one last hurdle to get past before our first IVF cycle.  When I say...well kinda, I mean that in the sense that in order for this to work there are a LOT of hurdles to jump.  However, this is a major one.


So, everything is in place.  The PGD place we're using's in the middle of building our test right now, and Adam and I have our "official" nurse appointment this Friday to start at the IVF clinic.  We will go over everything, and start the schedule for our pre-testing, etc.  However, there is one thing that could prevent us from doing this whole thing.  I'll try and explain it the best I can.  It has to do with the HLA typing.  


HLA typing is what determines if you are a bone marrow match for someone.  In 6-7% of the time, a child may not inherit a complete set of HLA information from a parent.  This results in what they call a "recombinant HLA".  If Macy is in this 6-7%, then there will basically be no way any embryos will be an HLA match for her.  This is because children usually inherit the entire HLA complex from their parent. I will list some examples below to explain it a bit better.


For example:  If my HLA type was: ABCD1234, and Adam's was: EFGH5678, our child could inherit an HLA type 1 of 4 ways as: ABCD (from me) and 5678 (from Adam), or 1234 (from me), and EFGH (from Adam), and so on.  However, sometimes if the recombinant HLA is inherited for example, instead of inheriting say, ABCD from me, say she inherited AB34 instead.  That is a recombinant HLA, and since it only happens in 6-7% of cases, there would be virtually no chance any of our embryos would be a match for her.  


We had Adam's parents, and my parents send in DNA samples so as they are building our test, they will be able to tell by comparing our parent's HLA's with ours, and Macy's to know if she has a "normal" HLA or "recombinant" HLA.  The alternative would be to go through the entire IVF cycle only to find there are no HLA matches, and never will be.  And since IVF with PGD cost about same (per cycle) as our SUV when we bought it new; we don't want to take that chance.


Life pre-FA if someone told me there was only a 6-7% chance.  I probably wouldn't have thought twice about it. Just assumed we are good to go.  But when Macy already has a disease that you have about a 0.00028% chance of having in the first place; 6-7% is huge.  So please pray that she inherited a normal HLA type.


Hopefully we will have good news in a few weeks!


Also, I wanted to take a moment and say a HUGE thank you to everyone that donated to the Fanconi Anemia Research Fund; whether in honor of Macy or anyone!  I know there is still money being sent in, but so far as we know there has been almost $700.00 donated in honor of Macy and we are truly so thankful to have so many people that care about her.  She is such a loved little girl, and we are touched by everyone's generosity. 


In the last two weeks two little girls have lost their battle with FA and it breaks my heart.  Their families are devastated as you could imagine, and our thoughts are prayers are with them during this horrible time.


We, as parents are more determined than ever to find a cure, and we couldn't do it without donations to fund research.  thank you again. 


take care,
Jenn



Sunday, June 3, 2012

Fun and Business too!

So we finally have everything we need to start!!!!!  Yeah!  I received my carrier screening results last week and emailed them to our PGD place.  Mine was positive (as we predicted).  Our consult with them is Tuesday, and they sent us the kits already so Wednesday morning we will get our blood samples, and cheek swabs done and overnight them to Chicago.  Then they can officially start building our test.  Later this week I plan on calling our IVF clinic to officially "book" our IVF month.  I am not sure if it is going to be August or September.  I will see what they say when I call, because it will depend on my cycle.


So anywho, we have been pretty busy this past week or so.  We spent Memorial Weekend up in Mackinaw.  We were home for one day then headed out camping at the lake through this weekend.  We kinda got blasted a little with colder and rainy weather, but didn't let it ruin our fun times!  We ended up getting an "Old Fashioned" picture taken of all of us (12 people) when we were in Mackinaw.  I will have to post it sometime.  It's funny, and my nephews and niece are making the cutest, and silliest faces in them.


Here are a few pic's from our adventures!


Macy playing in the sand on the beach...she had a lot of fun running around with her cousins, and dumping sand all over!

Big smile this time!

 Serious looks from Macy and Adam...or maybe they were sick of going in gift shops!  :)

Okay, so I am a dork in that instead of buying shirts I just take pictures of the one's I think are funny!  :)


I had to take a picture of this one because it is soooooooo my Dad.  Hehehehehe!

I thought Macy would probably like this one! 
 This is the bronze statue guy.  He stands there ALL day (seriously all day).  And once in a while will move to scare someone....yes it's a real person under there.  He even wears bronze colored contacts. 

Macy getting ready for our Old Fashioned picture in her Victorian Style dress and old school doll.  She had a cute headband with feather too, but kept taking it off.
 Not sure what she is pointing at; but thought she looked cute!

Macy and I chillin on the boat!  She had fun running around earlier and was pooped!
Going fast with my hair flying all over!

Hanging out in the camper when it was raining...being silly with the sand toys!

Macy and Bela (Bayla)!  Macy thinks it's hilarious that she can use Bela as a back rest.
Macy driving the boat
 A little blurry, but still cute!  Macy and Daddy!
 Chillin in her camping chair!
 I thought this picture was so cute in how she is walking.  Arms pumped like she owns the place, etc.  hehehe, she is so funny!


So those are all the pics for now.  The busy season has officially started.  Looking at the calendar we have something going on every weekend until the middle of August.  Whew!  I am tired just thinking about it.  But, with a lot of busy comes a lot of memories too!  Can't wait for all the silly things that Macy will do this summer!  She has been doing some really silly facial expressions lately!  love it!  


And as for the IVF...after a little over a year of planning and trying to get everything together the time is finally here.  Who knows, a year from now we could be holding a baby (or babies) in our hands!!!!


Take care,
Jenn