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Wednesday, May 27, 2009

On Edge...

I'm watching Niki like a hawk right now. As a matter of fact, I'm holding her as I type this entry.

I suspect that she had a little GI bleed shortly after we came home. She had a bit of blood in her spit up (twice!) and it was not fun. (For me, anyway.) Today was a "no factor day" (NFD) so I know her FVII level is low. Factor VII has a very short half-life and only lasts about 3-4 hours in the body. I'm always on edge when it's a NFD because I feel like she's swimming without a life jacket!

She is definitely not teething so the blood surprised me. (Some babies with hemophilia will bleed once their teeth start to cut.) One can only surmise that she's having a dreaded GI bleed, right? Naturally, we were concerned so we contacted the hematologist on-call. The doctor advised us to give Niki her factor (which we promptly did) and she was cranky ever since. My poor girl JUST fell asleep. Niki is a laid back baby and this is the first time I can honestly classify her crying as inconsolable. This, of course, placed me on "red alert". Unfortunately, this also turned out to be the time that John had to go to work. He helped me calm her down, but I was not feeling very confident about her crying episode. She hardly ever cries. I could've blamed her unusual behavior on "normal baby stuff", but I don't EVER disregard anything anymore. I learned my lesson. Besides, the last time John had to go to work when one of our babies was "acting funny" didn't turn out so well.

That was the night Ethan had his head bleed.

Hopefully, my paranoia is justifiable because I often second guess myself. Niki is fine and I know this. She's finally sleeping and her factor likely stopped the bleed, but I'm still a nervous wreck. I'm a nut, I know. I suppose I just need to get used to the idea of the inevitable. She's gonna bleed! We just won't know when. Even though her hematologist says that Niki's presenting as a "mild" so far, the fact that she's a "severe" like Ethan continues to keep me on edge. She was born without FVII just like Ethan was. However, I do find some comfort in the fact that she's getting her prophy (preventative treatment) dose of factor. I'm not a fan of her Broviac, but it sure is convenient when we need to give her factor! BTW - Get used to the medical jargon folks, it's here to stay! Side note: Hemophiliacs can have symptoms that present as a "true severe" (frequent bleeds) or have symptoms that present as a "mild" (minimal bleeding). Ethan was a true severe, obviously.The only reason why she "presents" as a mild is because she has prophy, but I have no doubt in my mind that she's a true severe like Ethan.

Meanwhile, I just can't wait until she can tell me when she's having a bleed.

Tuesday, May 26, 2009

Touching base...

So much for posting everyday...

My apologies for being M.I.A., but I've been pretty busy with the kids. I seriously don't know how all the other "blogger moms" do it! I has been virtually impossible for me to post daily. Tips anyone? Meanwhile in my neck of the woods...

-Niki had her ears pierced on a "no factor day" and was completely bleed free!
-Kev is *almost* done with Kinder. School ends on 6/4.
-Boo is still Boo. Cute, cuddly, and chaotic! :-)

The big move is only a few short weeks away and I'm slowly coming to terms with it. I'm also starting school in four weeks so I'm trying to make the most of my freedom. Juggling work, school, and kids will reign supreme once again, but at least we have our health right?

Sorry for the short post, I'm lazy. I'm off to cuddle with my warm hubby now. G'nite.

Saturday, May 9, 2009

Mother's Day...

Tomorrow is my only "special day" of the year. My birthday has been nonexistent ever since Kevie was born so Mother's Day is all I have. I don't mind; I like having him as my birthday buddy. :-)

I've had to work on Mother's Day for the past two years so I'm kind of looking forward to tomorrow. Granted, I would get off two hours early on my previous Mother's Days, but's not the same. I don't remember what I did in 2007, but last year I got to watch Alicia Keys! It's so nice knowing that I don't have to work tomorrow. That is a gift in itself.

Mother's Day 2009? No work = so far so good. :-)

On Friday, Kevin surprised me with a beautiful bouquet of paper flowers, a card, his hand prints, and a coffee mug. I just got back from a dinner date with Kev, Boo, and Niki. The lions were perfect angels and people actually stopped to admire how well behaved they were. Ha, fooled them didn't they? I didn't realize that our dinner was Mother's Day-esque until the waitress greeted me. :-)

Even though I have yet to enjoy my special Sunday, Mother's Day has been pretty awesome so far. Being a mother is the best job I've ever had.

Friday, May 8, 2009


I often drive on auto-pilot. It's a miracle I make it to my destination in one piece! My body simply takes over when my mind begins to wander. More often than not, I think about Ethan when it is just me and silence.

Oh, silence is my enemy.

My memory is so vivid, it hurts. Flashes of anguish appear before my eyes and there's nothing I can do to stop it. I have no control over it; it's like breathing. I only snap back into reality when I begin to feel the all familiar sting in my eyes - the sting of tears starting to fall.

I really should be paying attention to the road.

I'm beginning to dread the start of my long commute to and from school. That will be five days a week of total silence - just me and my thoughts. Not even Catholic radio can distract me long enough! I sometimes glaze over and just remember my baby. Remembering hurts. Then again, I shouldn't limit this auto-pilot thing to just driving. I'm starting to feel like Adam Sandler in Click

Oh, I remember all the time! Just earlier today, as my kids were taking a bubble bath with their baby cousin, I thought:

So that's how my tub would have looked like if Ethan were here. That is what three boys in my bathtub would have looked like.

An instantly, a fun moment was turned into a solemn one. I didn't realize I said it out loud until my sister echoed my "thoughts". I've been doing that a lot lately. One minute I'm happy and the next I...remember. Remembering doesn't make me sad, it just makes me hurt. Does that even make sense? I guess I just miss him today, that's all. Well....I miss him everyday, but today just stood out a little more.

Or maybe my auto-pilot just went off.

For Niki:
FVII Deficiency
Factor VII Deficiency
Factor 7 Deficiency
Factor VII Deficient
If you have this rare bleeding disorder, please message me! My daughter has it too and you are not alone!

Thursday, May 7, 2009


It's tough to be in a relationship.

Knowing that "men are from mars, women are from venus" doesn't do jack to solve the daily issues that arise from having different genitalia and social upbringing. Men and women will NEVER truly understand each other. Period.

Okay, I know it sounds cynical of me to say it, but it's true! Sure, it's entirely possible to understand where "he" is coming from, but it still doesn't change how "she" feels. If our issues could be solved by the thousands of "relationship theorists" out there, don't you think there would only be one self-help book published? Exactly. It's simply not possible to fully understand the opposite sex unless you actually are the opposite sex. The cycle of misunderstanding continues. "He'll" always go into his proverbial cave and "she" will always want to

I've been with JD for eleven years. We grew up together and having witnessed his blossoming into adulthood, you'd think we'd understand each other more than most people. Ha, but sometimes I still don't get him, and vice versa! I don't think I ever will. My grandparents have been married for over 50 years and they don't get each other. (I hardly doubt this is a family trait.) It is just the law of the land. Men and women just don't click and are destined to do so until the end of time. But hey,you probably don't get your significant other either, right?!

On the other hand, if being in a relationship is so hard, then why not be single?

There are different schools of thought on whether or not the "single life" is better than the "married life". I haven't ever been single as an adult so I wouldn't know. But, I will say that it's nice to have someone to come home to...and spoon with at the end of the day. ;-) And as corny as this sounds, I want someone to grow old with. I found my synonymous lobster - my life mate! We're not perfect, but despite all the snapping and clawing, I'm still pretty dang smitten with the guy.

I can only hope the kids are so lucky.

For Niki:

FVII Deficiency
Factor VII Deficiency
Factor 7 Deficiency
FVII Deficient

If you have this rare bleeding disorder, please message me! My daughter has it too and you are not alone!

Tuesday, May 5, 2009


Did you know that I usually write my blog titles after I've finished my post? Writing the title first hinders my flow because I'm compelled to stay on topic. I like having the creative freedom. :-)

I should be cleaning right now, but I'm lazy. As a matter of fact, I've been tired all day! I took a nice two hour nap with Niki earlier, but I'm still sleepy. I would like to knock out right now, but I have to prepare for Niki's final home health visit tomorrow. On a side note, I'm not usually this tired unless I'm preggers. But shoot, let's not even go there! Ya have to have sex to get preggers and I simply haven't been in the mood lately. I know, TMI right? Anyhoo...

Today consisted of me doing what I do best, procrastinating. I have a thousand things that I have to do, but I just can't bring myself to do them. Frankly, I'm overwhelmed. I have waaay too many projects I need to tackle. So much to do and so little has become the story of my life.

I need a break.

Monday, May 4, 2009

Spring Cleaning...

I dread getting started on my spring cleaning this year.

There is SO much to do and frankly, I'm feeling overwhelmed. Perhaps it's because this year's "spring cleaning" is actually "preparing to move cleaning". I despise it even more this year because reality is beginning to set in. We're leaving our happy home soon.

In just a few short months my home, with all of it's memories and sentimental value, will be occupied by strangers. They will never love this place as much as I did. It's just not possible. We were the first occupants after it was built so I know where every beautiful ding, mar, and scratch came from. My babies showed their love everywhere. ;-)

But alas, this house is getting too tiny for our growing family. Oh woe is me! A love lost is never easy and I LOVE my home. I really don't want to leave even though I know it's in our best interest to do so. I'm going to be in school full time soon and we need to economize our family budget. Besides, the kids are growing up. We need more space and Niki needs her own room! Or at least that's what I keep telling myself to soften the blow.

But still...breaking up is hard to do.

I often get attached to a lot of inanimate things. Or rather, I don't welcome change with open arms. I desperately cling to pieces of the past. EVERYTHING holds sentimental value to me. I'm not a pack-rat. I'm a schmuck and I have difficulty letting go of things. But hey, that's my trademark so don't go there.

Which is why my beloved deceased Jeepny still collects dust in its parking space. Which is why the infamous Ruff (the stuffed dog I've had since I was Kevie's age) still sits in my closet. Which is why I have boxes and boxes of little scraps of memories lovingly stored away. Which is why I can't bear to part with the clothes Ethan wore. Which is why I've held onto the boys' baby clothes. Which is why I still have Kev's Elmo collection. Which is why I still have the red glittered ball we purchased for Anthony on his first birthday.

Oh, if only I could box up this house and take it with me! Maybe a piece of the rug will do? Or maybe I'll just keep one key...

Bah, I just can't move on!!! I'm procrastinating by blogging about cleaning instead of really getting down to business. I loathe having to pick and choose what to toss and keep. I haven't had to before since space was never an issue. It's hard to choose when every bit and piece holds a memory for me. It's even harder because I know I'm going to bawl like a baby when we finally do leave this place - when all of my treasures have to go back in to storage. I can stall though, can't I?!

What seems like trash is treasure to me. When I am forced to downsize on my "trash", I mildly comfort myself with the plausibility that someone else will cherish it as much as I did. It'll take some time, but I know it has to be done.

The junky old jeep sitting in the parking space? It's really the car I took my kids home in. It was John's first car and our first family car. LOTS of memories in that Jeep. I love my Jeepny!!! Even though it's been replaced by an awesome murdered out SUV, I will love it always. I want the old girl to go to a good home. BTW -anyone know of any good charities?

The raggedy stuffed animal sitting in the closet? Well, Ruff is my childhood! He still has a blood stain on his left ear from when I cut myself on accident. Ruff's ear stopped the bleeding and I used toilet paper to bandage myself. In an effort to hide my injury, I told my mom we were playing pirates when she saw the both of us wrapped in Charmin. I was five, okay?! I still have the scar on my palm... I've obviously outgrown stuffed animals, but Ruff is being buried with me when I die. :-)

The box-o-crap filled to the brim with old movie stubs, dead flowers, concert tickets, birthday cards, stickers, ribbons and squares of wrapping paper? It's really the story of our lives. Movies John and I saw during our youth, dried roses from proms/anniversaries/a marriage proposal, concerts we saw before we procreated, cards we've been given or gave each other, and mementos from birthday parties. These are all pieces of the life John and I have built together. A collection of real life items from our past. You should see the stuff I have from the old skool! Someday, when time is on my side, I'll scrapbook these little bits of memories. Someday...

The box of dirty baby clothes? That is all that is left of my "earthly son". Ethan is gone. His soul is in heaven, his little body has been returned to the ground, his smell is all I have. Aside from his legacy, that is all my baby left behind.

The other box of baby clothes, elmos, and the glittered ball - the stuff I should have donated years ago? Those are what's left of my babies and their disappearing childhood. My little lions are growing rapidly and in a blink of an eye, they'll be grown with children of their own. Maybe, just maybe, one day my grown babies will look at these tiny trinkets of their youth and remember just how lovely their innocence once was. Maybe they will realize just how much they've grown and how far they've come.

So do you see why I'm procrastinating on saying goodbye to my space and all of the memories stored? I don't want to downsize on my treasures, because it means I'm downsizing on my life! I can't bear to leave this house which is why I don't want to "spring clean". I've never had to do this before. Ever.

I know that the chips on the baseboard were made by Anthony running into the walls with his blue motorcycle. He'll outgrow that motorcycle soon, but those dents are here to stay. The smudges on the sides on the door panels? Those are my Kevie's fingerprints! His hands will never be that small again and I've kept them there to remind myself of how fast he's growing. The door to our house? That's the threshold Ethan and Niki were carried over the first time. That's the door John and I closed behind us. When it was just he and I behind that door, we knew 1201 was the unit we wanted. It was the closed door to unit 1201 that felt the most like home. Each room holds a memory. Even the bedroom. ;-) That's where we hit one-in-a-million, twice! Ethan and Niki were created here.

The new owners will never love this house as much as I do. I can't reiterate this enough. I've probably said it a thousand times, but I mean it! It's just not physically possible for another family to appreciate this place like we did. And this may sound crazy but, I like to think that these walls will weep along with me when we finally leave our home.

I'm pretty sure this place loved us too.

So here it is...for Niki:

FVII Deficiency
Factor VII Deficiency
Factor 7 Deficiency
FVII Deficient

If you have this rare bleeding disorder, message me please! My daughter has it too and you are not alone.

Sunday, May 3, 2009

For Ethan and Niki...

I often wonder what life would be like if Ethan were here today...

He'd be one year old.
FVII would mean nothing to me.
"Fly Like A Bird" would merely be another song they play during Communion.
Holy Angels would still only be the name of a church and not also the name of a section at the cemetery.
Niki probably wouldn't be here.

So the question is, if I could, would I change a thing about life as I know it?

Honestly, probably not. Losing Ethan has been devastating, but who am I to wish for something that wasn't meant to be? This was our destiny. He was meant to leave this life just as I was meant to miss him for the rest of mine.

I cling to his memory because that is all I have left. I miss him every day, but losing him has inspired me. I desperately seek answers for Niki because her only direct connection to FVII Deficiency is with a beautiful boy who now resides in heaven. Sure there are two other women that we've connected with so far, but their experience with this condition happened before the blessing that is NovoSeven. Niki really only has Ethan at this point. She needs a friend to grow up with. And maybe, someone out there does too! Maybe there's another mom like me looking for the same thing for her daughter or son. It could happen.

Aside from blogging about the craziness of day-to-day life, I hope that the gods of Google will connect us with another family, another infant or young child, with FVII Deficiency. Somebody out there has has got to be Googling this! Niki can't possibly be the only person in recent history born with this condition. It's a damn shame there isn't a support group for it. The internet is a powerful tool and I intend to use it. Maybe my tiny little speck on this galaxy that is the internet, will shine bright enough to help others like Niki find their way. Or maybe I'm just a dreamer. :-) Either way, it can't hurt.

From this point forward I will start or end most, if not all of my blogs with the name of her medical condition. Hopefully a simple phrase will connect us with people out there who are just like us.

So here it is...for Niki:

FVII Deficiency
Factor VII Deficiency
Factor 7 Deficiency
FVII Deficient

If you have this rare bleeding disorder, message me please!!!!

Friday, May 1, 2009


I'm not back to work yet so it may seem a little weird for me to be thankful for Friday's arrival. Nevertheless, I'm going to say it anyway - TGIF!!!!

Weekdays are crazy with everything that our lifestyle entails. Rushing home from work, picking up kids, homework, baths, chores, feeding, meltdowns, spousal bickering, and the latter make things real hectic around the house. Having three kids ages 5 and under make it REALLY hard to keep your cool sometimes. Especially, when you only have less than three hours to do your nightly routine. Fridays are nice simply because there are no schedules to abide by.

I only have two short weeks left being a pseudo-stay-at-home mom. It was so nice that I'm dreading going back to work. I mean, I'm not exactly the Susie Homemaker type, but I REALLY enjoy being home with the kids. Really. Even though I spent 80% of my time doing jack-diddly-squat, oh how I wish I could do nothing forever. It's not that I'm lazy, it's just that being home made me realize how hard I work. I didn't realize how hard a seven day work week was on my body until I became a complete blob at home. I feel less tense these days.

Dust bunnies or not, I deserved this break.

A lot of things are going to change in a few short months. I start school in July, the house is sold, and we now have THREE kids to wrangle in addition to our work schedules. Our family is making the dreaded move back in with the in-laws to help reduce costs. We have no other choice, I can only work part time when I'm in school! Ah shoot, it's only two years of sacrifice, right? We can do it. The in-laws aren't so bad, it's merely the adjustment period of getting used decreased privacy and space. It's been a few years since we've cohabitated with the in-laws so hopefully the adjustment won't be too hard. We've spent more time there just to soften the blow. It's still gonna suck though. I'm really going to miss walking around in my socks and undergarments at 2am. ;-P

P.S. Niki is doing much better. The redness has reduced and the knot is getting smaller. Thank goodness!