Back At It...

It's been a long time since I posted here.  Once hockey season starts, there goes my time.  Three kids in hockey, at the rink 4-5 times a week for hours at a time...so what did I do?  Got myself elected to the board :) Yeah, busy.  Brenden had a tournament this past weekend and now we're done.  Til soccer starts in May...somehow I ended up assistant coaching on Brenden and Taryn's team...sigh.  Crosby is playing too...and Karissa is playing softball...and we still have Girl Scouts...yeah busy.  

But the blog time off did come with news.  I found out that I am not a carrier of hemophilia.  Crosby's gene was a mutation...my girls will not be carriers.

March is Hemophilia Awareness Month...my facebook friends have seen me posting a fact a day... :)

I will "try" to keep up with this a bit better... :) 

Never Forget

I woke up this morning to my youngest child, once again covered in blood and thought not again.  Last week we were in the hospital all day getting  blood transfusion.  The week before we were there for a factor infusion.  He hasn't bleed anymore yet today, thank you Lord. 

So I turned on the tv to watch the 9/11 coverage.  Typically I am a very emotional person.  I get weepy at Hallmark commercials...you get the idea.  So I've been a wreck all day.  I was crying, watching the coverage, remembering that day.  My youngest daughter Taryn asked why I was crying.  So I told her and cried some more.

I didn't personally know anyone who died that day, but as an American, all those feelings of grief, sadness, terror all came back.  I remember where I was that day.  At work, at St,. Norbert College, at the front desk of the Kress Inn.  We  had a tv in the lobby that was always on the news.  So when they first said a plane hit the World Trade Center, I went back and told my boss.  Then the covereage continued and I saw the second plane hit.  People were all over the lobby watching the news.  I remember the fear, the unknown. 

I remember driving past the airport that day, seeing all the jets that had landed there, that didn't belong.  Long lines at the gas station, and remember hugging my baby boy, who was just turning one a few days later.  Now he's almost 11.

Today is a typical Sunday, another year of CCD begins, we hit the bakery afterwards, went to my work to do my weekly cleaning that I do.  And it's football Sunday!  My Vikes are on tv here in Packerland, woo hoo. 

We will never forget 9/11.  I pray for the families that lost loved ones and pray for our country.  God Bless America, land that I love.

The waiting is the hardest part...

Crosby went in for genetic testing today.  My whole idea of hemophilia in our family got shot down in June...so here we are.  I had thought that my mom's mother's sister's daughter's daughter's son son had hemophilia (got that, lol!  Crosby is the same way down our line from them).  There was the hemophilia link...we got the luck of the gene pool and the rest of my mother's large immediate family got lucky...

Nope.

He has Von Willebrandt's Disease, which is another bleeding disorder.  So now we don't know.  Am I really a carrier?  I sure have symptoms of a carrier, but we don't know.  Was this just a genetic mutation?  How did Crosby get hemophilia??   Are my girl's carriers??  AAAHHH!

So, I got tested by Crosby's clinic for Von Willebrandts...negative.  Whew, but still then no answers.  So we got referred to a geneticist at a local hospital, the office is right across the hallway from Labor and Delivery where my girls were born.  They drew some of Crosby's blood and he gets tested first.  Depending on those results, is where we go from there.  Now for the two to three week wait...

I just want answers...waiting for the answers that will explain so much. 

Breathe in, breathe out, repeat...

Crosby is in Winona, in the ER, as I type...I'm not.  I'm sure he's fine, I'm not.  I'm a bit freaked out.  All started last Friday night.  We arrived at my parent's house in Winona and voila, bloody nose.  In my mind, I'm saying f*&k, this won't be good.  We got it to stop.  Saturday afternoon, while camping at Prairie Island, another one, Sat night, another one...pretty bad one.  In a normal situation, I would have taken him in...Saturday night into the storm that hit Sunday morning was not normal. 

As I left Winona Sunday morning, after drying out and getting the girl's stuff dried out to go to Girl Scout camp, I left a screaming Crosby wanting to come with me.  Minutes later I get a text from Brenden, Crosby is bleeding agan.  Damn.  They got it to stop and all was well.

And today arrives.  Crosby got another bloody nose this am.  That's it, time to call his clinic.  They made all the arrangements with the Winona ER to take him in.  They are going to run a CBC count on him.  Hopefully his counts are high enough, he won't need a red cell transfusion...my gut tells me he'll need one.  So, here I type, wait, wondering what will happen.  I know he's in good hands, but I feel so helpless.  We shall see what happens.

In other news, Brenden is loving hockey camp and my girls are at Girl Scout camp.  I've seen some pictures of camp on FB, looks like they're having a blast.

My house is eeriely quiet...my cats seem confused, lol. 

My dad just called, Crosby's infusion went just fine.  Just need to wait for test results...

Visit to the HOC

Crosby had a 6 month check up today at his clinic.  We love it there.  They are so nice and so good to us.  We saw one of his nurses, his hemotologist, the nutritionist, the finance people, and the social worker, whew!  Crosby's iron count has been low so we've been giving him iron supplements and now are awaiting more test results.  Hopefully they have gone up.  The bloody nose episodes really did a number on his counts.  More to come.  Other than that, all is A-OK.

I had to ask one more time if there was a possibility if he could play hockey.  And he could, but it could kill him if he got injured.  So, no, not worth it.  I know that.  I've always known that, it just sucks.   Just telling him will be hard, because he keeps asking to play.  Ugh.

Crosby does start soccer this week...kinda makes me nervous, but I know he's excited and I am excited for him.  After his whole life of watching his siblings do all their stuff, it's finally his turn.  My baby is growing up.

Even as I hear them all arguing in the living room, and thank goodness it's almost bedtime, I am reminded that I am so lucky to be their mom.

Genealogy

I have always been interested in genealogy.  Maybe it's the only child in me, wanting to know my family.  However, I have really done nothing about it over the years.  I know who my grandparents are, great-grandparents, but it stops there.  I really need to talk to my parents a bit more as well.

Watching the NBC show, "Who Do You Think You Are" has gotten me on the kick again.  Wish I could have all the experts helping me.  But I have another reason for wanting to find out.  Hemophilia is an inherited condition, coming down the maternal line.  I want to find out how many others have it in my family.

Finding out Crosby had hemophilia was the shock of all shockers.  We did not know we had this.  He got it from me, a carrier, who got it from my mom, a carrier, who got it from hers, etc.  It could have been a spontaneous mutant gene as well.  But as we eventually learned, my mother's cousin's son has hemophilia, (my mother's mother's sister's, daughter's son, whew!) so it does come down my maternal line.  Or perhaps a hemophiliac male passed it to his daughter would would automatically be a carrier and it went down the line that way.  It's just amazing that none of my mother's brothers were hemophiliac nor her sisters carriers as well.  Luck of the gene pool.

So by doing some web searching, I have traced up my maternal side back to my great great great great great grandparents Andreas and Barbara Wielebski. (Which is also spelled, Wylepski, Wielepski, Wielebska...go figure).  They were married in 1779 in Pawlowo, Poland. That's right, I have Polish blood in me.  Good thing I live in a village called Pulaski!!  Well, truthfully, somone else did the research and I found their postings online.  I'm hoping to get a hold of them to "compare notes." 

I have so much more I want to find out...I want to learn about the Belgian and German in me as well.  I am, however, pretty sure that I am not related to Queen Victoria, who was born with a mutated hemophilia gene and passed the condition on through many royal families in Europe...current British royalty were excluded from inheriting that gene...thus I was not invited to the Royal Wedding... ;)

If anyone has any genealogy trick of trade in doing research...I'd love to hear them.

The First Post...

A while back a friend suggested that I should blog.  Blog about my life with a child with hemophilia.   I had never thought about it before.  My besties know my story.  That story will come out here in time.  I experienced an incident this weekend, and because of it, I kicked my butt into gear to start this blog.

I surprised my kiddos with a trip to Blue Harbor Resort in Sheboygan, WI, for the weekend.  We arrived at the hotel, checked it out, had dinner, and got our swimsuits on to head to the indoor water park.  On our way down the hall, I hear, "Mommy, my nose is bleeding."  I turn around and Crosby, my youngest son, who has hemophilia, has a bloody nose, a gusher.  Damn.  Damn, damn, damn.  I tell Brenden to go to the park and grab a towel.  Meanwhile, we sit on the floor in the hallway.  I pinch his nose, I have blood all over my hand.  A hotel employee asked if we needed anything.  No, we just have a bloody nose, a towel is coming.  Brenden comes back, I get the towel over his nose and we head to the park. 

Once inside, Crosby and I find a chair and sit down, while the other three take off to the wonders of the slides and lazy river.  And I wanted to cry.  My first thought was crap, we're going to have to go to the ER.  Luckily, I had a box of factor in the car, from when he had to get treatment for the bloody nose earlier in the week.  Crosby wouldn't be able to play in the park.  Our weekend would be ruined...the thoughts just kept a coming.  And for the first time, I let his condition take over my emotions.  I have accepted that he won't play hockey, but to have a damn bloody nose not allow him be a little boy and play in the waterpark...I just hugged him and kept saying I'm sorry. 

It stopped.  Finally.  Thank you, Lord.   We had a wonderful weekend at the resort.  No more bleeding.  The Easter Bunny found our room and everything! 

And here I am, I want to write about my story.  Welcome to my normal.