high flyin' hemo

Zander is wondering if being a trapeze artist is on the "do not participate in list" for Hemos...If so he may just have to break the rules, look at his form, his technique, his smile. He is a thrill seeker!

You Want Grady to do What?

So I have made the executive decision that Grady (Twin brother to Jack) will learn how to infuse him this summer...yes that's right I am giving permission for Jack's brother to to stick him with a needle! Jack thinks I am totally nuts...and maybe I am, but after the Valentines Day fiasco I need to make sure someone has Jack's back. Jack isn't too keen on Grady trying the needle, so we are starting slow for now. Grady set up the kit, and pushed the syringes. Jack's expression in the picture say's it all. I think Grady knowing how to infuse Jack will bring everyone more piece of mind. These boy's are young....but they are mighty!!

Get yourself a girl

I knew a woman several years ago, who came from an affluent family in Peru.  She always used to tell me that I needed a girl for stuff (laundry, housekeeping etc).  Apparently "sexism" means something different in Peru than in the US.  However... sometimes, when I'm feeling overwhelmed with the many tasks of motherhood, I do find myself muttering "I need a girl".

Which brings me to - our daughter, who is deep in tweenhood and quickly approaching teenhood.  She is taking on more and more responsibilities in our house (although she is certainly not utilized as a domestic servant- although she might disagree) and this week, she helped me do Harris' infusion.  She held, I stuck.  She did really well - especially considering the weight to length ratio of her brother.  I am so glad that we have another helper around and I am so glad that our kids can be raised with such a broad idea of what makes a normal life... especially since she has a chance of having a little bleeder of her own one day.

He's a big boy now

Yesterday morning I had to leave the house early and didn't get back until the afternoon. Travis needed to go to work when I got home. We were just going to infuse Zander that evening but I kept having this nagging feeling that I should just get it done. So, I braved the infusion process alone.

Zander is really good to just lay there but I worried a little about him reaching into my sterile field. I told him that I would turn on Buzz (Toy Story--his current obsession) and explained he needed to keep his hands behind his head. I got my sterile field ready, laid him down, put my gloves on (that is the point of no return) and did it. He didn't move, fuss or try to run away.

I felt very proud of him (and me). This is really great because it is an added measure of freedom. I don't have to worry about Zander having an incident and needing another set of hands to infuse. Yay for MORE independence.

Is this a sign of obesity?

Does anyone out there ever look in those celebrity magazines, they have the sections labeled something like "stars are just like us" then show the celebs taking out their trash or walking a dog. Well this video could be labeled, "hemos they are just like us." Oh, and I don't read those magazines either, I have just heard about them from a friend.

ps-If Zander continues to eat in his sleep, we will need to make sure he gets some extra play time so we can avoid having a "hearty" kid with bad joints.

Sometimes you have to be the giver

I love me a good mom catch phrase.  I am certain that at some point it was fun and games until someone got their eye put out, that someone's face did stick like that, and that some fool actually did jump off a cliff because their friend did it first.  When my kids tell me I'm the meanest mom ever, I say "Good.  I love being the best at stuff".  Also, I think I'm going to teach them that the Constitution of the United States has a "because I said so" clause.

One saying I use with my kids a lot is "sometimes you have to be the giver."  I made that one up myself and it is good ammo when someone in the family is whining about doing something that doesn't make them the center of the world.  I always want our children to realize that in relationships and in life, sometimes, you have to be the one who helps meet another's needs.  I think this is especially true when families deal with conditions like bleeding disorders that can easily ooze over every part of life sucking attention continually toward hemophilia.

I want my kids to know that whether a person has been dealt a lousy hand or a great one, the obligation to serve others is the same.  My son is not exempt from giving to others just because others will spend time giving to him.  I want him and his siblings to know that there are lots of people in the world, with lots of different problems.  Some problems you can see in bruises, some you cannot.  Our problems are not more significant than those dealt with by the billions of other people that live on this planet.

That is why every year, we help raise funds for the Cystic Fibrosis Foundation.  I have two nieces with this disease and I want a cure.  We also participate in the annual CF walk with our family and friends to support the foundation and our girls... and because the walk begins and ends at an amusement park, there's never any complaining about being the giver.

Warming up for the big walk

Our family baby... diagnosed with CF just after birth

Harris getting bossed

Harris with cousin Arden (diagnosed with CF at 4 months) and her soccer team

Harris and Derek along with uncle Matt and cousin Maisy on
"Big Pink"  (I have been lobbying for a name change for
that slide for 4 years now)

... post Big Pink

Harris and Henderson piloting their plane in opposite directions

The Frog Hopper part 1... yep, my kid's wearing shorts and rainboots.  Classy.

Harris and Zander cruisin' in their sparkly ride...

...with a chaperone.

Frogger part 2... 

Zander remains unimpressed

The Frog Hopper story... way better than the actual Frog Hopper

Hmmm... does this mirror make my head look big?

brothers on a coaster... in the front of course

Walk the plank

I was in the kitchen when I heard my 8 year old son say "OK.  Walk the plank Harris". Huh? (Clearly, this is what the inventor of pillows intended...)

The plank... (aka- the chair mom's been about to reupholster for 5 years.)

Man overboard

... and again

and again (nobody panic, Hurley did not land on the baby)

look out below...

...a dive with a twist.

why are my hands as big as my brother's face?

I am your captain.