Tap Tap

Here it is...the long awaited infusion video. This is a typical infusion experience in our house. You can hear Mia in the background fussing a little because her foot was hurting her; but she knows that when I am doing an infusion on Jack she just has to stand back and wait her turn...we did get her foot fixed! Grady was on camera duty. Something he took very seriously. He wanted silence through the entire production. You can even hear him tell Jack to be quiet because he is being recorded...that made me laugh. You will hear us refer to an infusion as Tap Tap. When Jack was little and getting infused in the hospital once a week, the nurses use to tap his veins to make sure they were good candidates for a needle stick...hence...tap tap....Everyone is involved when we do this. Mia, my 4 year old even gathered all of Jacks supplies for his infusion the other day.
I didn't show the set up, because everyone will have their own way of doing this. The other step you don't see me doing is wiping the syringes with alcohol swabs. This was done outside of the camera angle..:) Everything else you see is typical of a tap tap day.

Jack, a.k.a The Participant, Grady,a.k.a The Producer,
Awny a.k.a The Infuser, and Mia a.k.a, Sound Effects

The Power of Prophy, part 2.

Lots of people ask questions about exactly what treatment for Harris means.  I think they imagine it to be lots worse than it is...

Prophy day (we have a standing appointment at our center for once a week treatments:)

• 7:30 wake up.  Have a nurse.  Have a bath.

• Daily bruise inventory? Check.

• Get dressed in short sleeves for easy access.  Go for a layered look with a sweatshirt to keep the veins warm and plumpy...and stylish.

• Electronic distraction for 4 year old brother? Check.

• Factor? Check.  Extra box of Factor?  Check.

• Arrive at treatment center a little early for parking...

• ... and playing

• Favorite exam room?  Check.

• Purple gloves.  You know you've got trouble when they pull out the purple gloves.

• Pick a vein... any vein.

• Mmmm.  Hot packs.  Warm veins are happy veins.

• Mix the factor.

• Cross your fingers for one good stick.

• Let the good stuff flow.

• Voila!  

• Get big love from the amazing team.  Seriously.  They are like prophy Ninjas.

• Get big love from Mom.

Done and done.  Now, what's for lunch?

The Power of Prophy

Last week was our 7 month comprehensive appointment for Harris.  (It was supposed to happen at 6 months, but I sort of didn't schedule it.  Oh well.)  He has had 2 infusions so far... both within the last month... and he is trying to walk.  In case you missed that... he is 7 months old and trying to walk.

The title of "Earliest Walker" is currently held by a cousin of ours... 8 months- full on walking.  Zander, who you will also know from this blog, walked at somewhere between 9 and 10 months.  Harris currently holds the family record for "Biggest Baby" (9lbs, 10 oz) and "Longest Gestation" (42 weeks, 2 days - hence the biggest baby thing).  At this point I'd like to go for the hat trick just so that we can get past the crawling... which is basically a phase where your kid becomes a human vacuum cleaner/Lego detector.

Between the family bleeding history (namely all the hemos are covered in bruises all the time) and the shaky standing/walking... we have made the decision to start Harris on a "step wise" prophy protocol. (Prophy is short for prophylaxis... which is short for "we're going to just go ahead and put that clotting factor back in your veins before you start that pesky bleeding.")  He will go into the center once a week to get his factor on... until he needs to go in twice a week to get his factor on... until he needs to go in three times a week to get his factor on.  (Factor is - in our case- clotting factor 8. Which is what Harris' blood does not have, but what his medicine does.)

It might be the first long-term plan I've ever had.

For me this decision came down to one basic question.  Is Harris' risk of developing an inhibitor (an auto immune response that is sort of like having an immunity to the clotting protein), by starting prophy early greater than the risk of him sustaining irreversible joint damage by putting it off?  We're going with "protect the joints".  The research study we discussed with our hematologist shows that the children (who they followed from birth to age 6) who only infuse when there is an "episode" already showed signs of joint damage at age 6.  Even kids who never had a documented joint bleed followed this pattern.  The kids who infused with prophy - no joint damage at age 6.  Unfortunately, the study did not ask or answer the questions "when is the best time to start prophy" and "what is the best way to administer prophy treatments".

We know, based on family history and genotyping that Harris has a low risk of developing an inhibitor.  We also know, based on watching him  fall on his bum, knees, head, elbows, hands and wrists that he does not have a low risk for developing a joint bleed.  I also know what joint damage looks like (courtesy of my father) and it ain't pretty people.

SO... this week we are putting on the power of prophy... if they can find a vein in Harris', um, "healthy" little arms.  Which is another post all together.

PS - Here's what Harris thinks of all this...