"I need a needle"

Those four magical words are not ones I expected my 2 1/2 year old to say. Zander woke up earlier in the day complaining about his knee hurting, I thought he napped on it funny but later that night he started to cry (randomly). He was grabbing his knee and he came over to me and said, "I need a needle!" I was very surprised: this was a first. We have had other times where I ask him, "Do you need a needle?" Sometimes he says yes and sometimes he says no. But he was adamant that he needed a needle. So, we infused him. He seemed okay and went to bed a happy camper. There were no issues to speak of the next day. I am not sure if he was having a bleed, I am not sure if he "needed" factor, but we have it and we can give it. I think it is important to show him that this is his body and his disease and if he felt like he needed a needle, then by all means a needle he will have.

Prophy (we're back)

Zander is back! It is funny as a result of his downward spiral with prophy we started some new traditions and some have stuck (ha ha no pun intended) and some have gone away as he is just laying there again. Here is a little video of one thing we do each time we infuse...it makes me smile. Let me clarify a couple of things, when I ask, "What are you going to do with your hands, legs and mouth?"...he shows me what he is NOT going to do. My favorite is what he is not going to do with his mouth...

One Anniversary and One Happy Birthday

In September we passed the one year mark for Harris' port.  A few weeks later he turned two.  The weekly trips to the HTC and the multiple needle pokes required to pin down a sneaky vein seem to be a very distant former life.  Getting the port placed in Harris' chest was undoubtedly the best decision for our family and I have been very pleased with the results.  We have experienced no break through bleeding and no joint bleeds since starting our regular prophy schedule.

One of the goals that my husband and I have is to encourage Harris' hemophilia to be a peripheral part of his life, rather than the defining center. The freedom that we and our other children have gained by being able to infuse him anywhere at anytime and with very little fuss allows us to integrate a once-problematic bleeding disorder into our lives just like other somewhat inconvenient things like soccer practices and sixth grade band concerts (seriously- who knew there could be so many different notes in "Hot Cross Buns"?)

While prophy might not be the choice that feels right for everyone, we are sure that it is the right one for us... unless you ask Harris.  His new favorite phrase - "I'm not infusey day".  Sorry buddy.  I'm pretty sure you'll thank us later.

prophy...ebb and flow

I have posted pictures of Zander in the past, just laying still while getting his prophy (or poke day/needle day as he calls it). I'm not sure if it was a mix of no longer using the numbing cream (his choice) or when we went on vacation it just through him out of his routine. But he, for the first time, struggled and fought so much with his infusions. It was a nightmare. But, we might be turning another corner (he wants cream again) and he also wants to infuse something before we infuse him. Today's patient of choice was his Woody doll, he is very serious about getting his gloves on and getting his patient his factor. He is having a bleed of some kind right now and he has been back to his better days (I keep telling myself maybe he knows it is helping him...) but it has been nice with having to poke him a couple times a day. Other things I tried (other than letting him infuse toys) to get him back to not fighting, showed him lots of pictures of him being infused and how still and happy he was, talk to him before I infuse about what I need him to do to help me make it an easy poke day (hands where they aren't over his port, legs not kicking, not screaming (although the screaming I could handle). Hope it keeps getting better.

Hemo Survey.

Who says being a hemo can't make you a few bucks? I saw a link posted on NHF's website, if you participate in the survey they send you a 75 dollar gift card. It took me maybe 35 minutes to do. They are only taking 200 participants so act fast!

Boys with arrows ... what could go wrong?

For those of you who have no family history of hemophilia, your frame of reference is a bit different than mine.  Butterfly needles, factor in the fridge and being my biology teacher's favorite example of X-linked traits were the same as shoes and socks and homework.  I have an advantage because I have seen what hemophilia was and what it is now.  (PS- it used to be lots worse).

I was reminded again of how life with this condition has changed when I read a blog post from a man named Guy Boss - it was published in HemAware online a couple of days ago.  Guy is older than my dad by a little bit but they are in the same generational cohort as far as bleeders go.  He writes a lot about his childhood and his parents efforts to raise two hemophiliac sons in a time when you didn't exactly pop a needle into your kid's port and call it good.

In this particular post he talks about wanting to be a cub scout.  After much anticipation and confusion about why the other boys were hauling their super rad scout uniforms on over to their den meetings, he  found out that he was not being allowed to join in the scouting fun.  The scout master gave many reasons, none of which I can repeat because I don't say things like that - even in quotes.

Fast forward the hemo time clock 60 or so years and there I stand (as a chaperone) with my son Henderson (not a hemo), my nephew Jack (hemo) and his twin Grady (not a hemo) at cub scout day camp... where they encourage 8 year old boys to shoot real arrows and real b.b. guns under the careful supervision of ... 16 year old boys.  There is hiking and full-contact-capture-the-flag and lots of "boy humor" the primary focus of which is underwear, butts and poop.  Clearly, this is what goes on when girls (and moms) are not around.  All of our scouts had a whole week's worth of scouting fun... a tiny act of cosmic redemption for my father, Guy and every man of their generation.  It is a tender mercy to be able to offer these experience to all my sons and I breathe a sigh of relief that I am me and not my grandmother when it comes to caring for our little (and not so little anymore) hemos.

*The picture at the top is Jack on "the jumping rock".  I did not take pictures at cub camp... I was too busy covering my eyes.

FYI: Factor Recall

Hey, saw this on Hemophilia.org site. Thought I would post it just in case it affected anyone out there that reads on our site.

Medical Advisory #413: Baxter Voluntarily Recalls One Lot of Recombinate Baxter BioScience has announced that it is voluntarily recalling one lot of Recombinate Antihemophilic Factor (Recombinant). Baxter states that this recall is being taken as a precautionary measure after a retrospective review of its manufacturing process revealed a breach in aseptic processing. This lot did meet all in-process and final container specifications, which include sterility and pyrogenicity. There have been no adverse events reported regarding use of this lot of Recombinate to date. This action is being taken with the knowledge of the U.S. Food and Drug Administration (FDA).

Recalled Lot: Lot Number – TRA09834AB
AHF IU/vial – 1060
Expiration Date 1-28-2012

If you have any of this product in your possession, please contact Baxter Customer Service at: 1-800-423-2090 for instructions on how to return the product and obtain a replacement.

PHYSICIANS: Please distribute this information to all providers in your area who treat patients with hemophilia.

CHAPTERS: Please distribute this information to your membership.

Please sign up for the Patient Notification System (PNS) to be notified directly about the latest recall or withdrawal of recombinant and plasma products. The System is confidential and time sensitive. It is administered by an independent third-party organization and is free of charge.
To enroll in the PNS, please call (888) UPDATE-U or go online at http://www.patientnotificationsystem.org.
This material is provided for your general information only. NHF does not give medical advice or engage in the practice of medicine. NHF under no circumstances recommends treatment for specific individuals and in all cases recommends that you consult your physician or local hemophilia treatment center before pursuing any course of treatment.