If you aren't happy...write a letter

I was raised by a very strong mother, who taught me a magical phrase that seems to be helping me out a lot while dealing with Hemophilia. Repeat it with me, "Everyone has a boss and I want to talk to yours."
I have adapted this a little to fit my situation, since Zander started receiving treatment I have written more letters than ever before. I never just write a letter complaining about service (although that is included in the letter) but I always offer suggestions on how to make the situation better.
If you were to peak into my medical folder on my computer you would see a lot of saved documents that start this way, "letter re Zander's _____". I must admit this has seemed to work really well for me. I have had two bills paid that were originally denied. I have the pharmacy implementing a training on factor (or so they say...).
I just thought I would share my mother's wisdom. If you aren't happy do something about it, make a call, write a letter, stand up for your child (self) and help make some changes.

you are going to stick that needle where?

Today was a BIG day for us, we accessed Zander's port for the first time. I was pretty nervous and my hands were shaking really bad but I took a couple of deep breaths and calmed myself down.
I got my sterile field all ready to go, with all the necessary supplies. Travis helped Zander stay calm, he asked him lots of questions about who was giving him his factor. It was then time for the maiden voyage of the port. I poked the needle in and said, "I didn't get it in all the way." Our wonderful nurse C said, "it will stick up a little, just check for a blood return." And boom, just like that, blood. Blood is a good thing, it means the needle is in a good place and it is okay to give him his factor. And as quick as we started it was all over, I pulled the needle out and we stuck a band aid on.
Zander cried a little but not that much. We will do two more times at the center and hopefully next week pull his picc out. Then one of our wonderful nurses will come to our house and make sure we are ready to do it at home, then we will be free!! The plan is for me to do one more try and then Travis will do a couple tries. We both want to be able to do it, especially once his picc is gone.

(here is the port, the redness will go away soon.)

Here is Zander waiting in the waiting area today, he pulled out the purple plastic couch and made himself at home.

The best part of factor delivery day...

Bubble Wrap.

A year in the life

Harris turned one a couple of weeks ago.  I keep trying for a baby that will stay a baby, but they keep sending this fast growing variety.  I am totally sending a complaint to their shipping department.

Derek and I were talking about how much our plans changed over the course of Harris' first 12 months.  If you would have told me that by the time he turned one I would be infusing my baby on our coffee table three times a week, I would have asked you to hand over your keys.

It may seem counter intuitive, but I cannot express how lucky I think my son is.  This morning I was able to access his port, infuse him to some of his favorite music while his dad held him and then pop him right into a warm bubble bath. His crying and escape attempts are subsiding substantially - he hardly fussed at all today, and I have every hope that the routine will be less and less dramatic with each infusion.

As I was wrapping him up in a big old bath towel, I thought about how amazed my father would be at the advances in care for those with this condition.  If he were alive, my dad would've been 60 years old in May.  There was not even an effective treatment when he was a child.  He did not have the luxury of good joint health, or instant relief from the pain of an active bleed.  In the end, the miracle treatment led to an early death.  (Which I'm still a little pissed about.)

 I do not have a memory of him that doesn't include a wheelchair (although I've seen pictures with him on crutches.  It's a little weird to me.), but it has never crossed my mind that my son might someday lose the use of his legs due to joint damage.  60 years can make all the difference in the world, I guess.

I have learned that in hemophilia, and in life, the choices you get aren't always the choices you pictured yourself having to make.  Sometimes that means choosing the least crummy of all the crummy options... and sometimes you can end up believing that the option that scared you the most has become the biggest blessing of your life.

Happy birthday little man.  Next up - soccer.

His face says it all...

I mentioned Zander had to stay an extra day in the hospital because his levels were all over the place. We went in today and they did another recovery study and his levels are still pretty low. We will stick with infusions three times a day. We are quickly learning Zander doesn't want to be like just any hemo, he wants to be in a bleeding class all his own! No one is sure why his numbers are so low, since he is getting a lot of factor. We may be fighting that stinking sneaky inhibitor (still....again?!?)

Port or bust

Zander is now a proud owner of a Port. His surgery went really well and on the outside Zander appeared to be perfect....but that is not what the labs were showing. Zander's factor levels were getting down pretty low, we started with doing factor every eight hours. When his levels stayed low it meant we had to stay an extra night in the hospital. We also went to doing factor every six hours, which meant he was getting about 2000 units of factor a day. To give you an idea of how much that is, our nephew Jack gets around 1500 units of factor for his prophy and he is eight years old. We aren't sure if this means Zander's sneaky inhibitor is still lurking around or if Zander just metabolizes factor that fast. When Zander's levels started being a little more consistent we were able to go home. We are still doing factor three times a day and will do another recovery study on Monday to see if we can drop that down to two.






The top picture is before his surgery (bright and early).
This is Zander after his surgery.













Here Zander is in the push car, we put A LOT of miles on this car.











cheese!











Here he is making a break for it...












playing on the playground at the hospital (same day as his surgery).











showing off his new cool scar!

port land here we come

As I typed that I laughed, port land...get it we live in Portland. Okay, tomorrow Zander goes in for his port surgery. I would be a big fat liar if I said I wasn't a little nervous. I know it will be okay just the thought lingers that something might go wrong. Endre keeps telling me that this is the best thing and I will just love Zander's port. I will update tomorrow...wish us luck.

Sterile technique and a Nigerian beat

Today we did our first solo infusion via Harris port.  We did so good. Seriously.  Derek was able to hold/restrain him by himself and I don't even flinch anymore when I stick him.  (Kinda morbid, but there you have it.)  Harris still cries when we hold him down, but he cries when I hold him down for a diaper change too, so...

Upon the advise of our hemo nurse, we played some of Harris' favorite music during the infusion to see if it would help him stay calm.  Once we got the needle in and he realized that it was not so bad, he stopped crying and let the Nigerian rhythms fill him up.  Mormon Tabernacle Choir:1  Harris:0.

Monday we're rocking it old school. Rad.



Good luck little Harris.  May all of your infusions be fast and all of your factor be clean.
-Mom

PICC be gone

Today we pulled Harris' picc line.  Watch out bubble bath... here we come.