Monday, September 26, 2011

The School Nurse

Yes, I think my "Christian" has become a regular at the school nurse. Part of the problem is that his teachers are still pretty nervous about hemophilia. When in doubt, off to the clinic! Don't get me wrong, I would much rather he go to the clinic than have an injury overlooked. But, yes, I am getting a few calls weekly and go up to the school at least once during the week to check on him.

I am a little worried that he might think that going to the clinic is a "treat." I've already been telling him to "stay in class and not go to the clinic all of the time." I think he gets it, he's just excited about everything at school.

Have you had issues with your child at the school clinic?

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Friday, September 23, 2011


I don't like change. It is inevitable. But I still don't like it. We are having some pretty major issues with the deterioration of our current Hemophilia Treatment Center. It is very scary, especially when the next closest one is at least six hours away. But sometimes the decisions that are most difficult are the most important and extremely necessary.

I need a hematologist that is experienced with inhibitors monitoring my "Christian." Any hematologist will not do. That was an important piece of advice I picked up at the Inhibitor Summit this past summer. I can't keep my head in the sand and think that overnight everything will be in place at the treatment center. It will take time.

No matter what it takes...traveling out of state, making phone call after phone call to follow up, driving a long distance for routine blood work...I have to make sure my son is being monitored as best as possible.

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Thursday, September 15, 2011


My "Christian" brought me a surprise from school...a pipe cleaner bracelet with five beads. I wear it proudly. Not just because my sweet boy made it for me, but because a year ago he could have beaded this pipecleaner. The nerve damage done by the first PICC line attempt was severe. It took many, many months before he could touch his index finger to his thumb. I am stepping back and taking joy in the little things...assisting with kindergarten homework, cleaning the kitchen after a satisfying meal, and little beaded bracelets.

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Tuesday, September 13, 2011

Why in the world....

Why in the world am I saying this, but since we bumped up "Christian's" daily dose of NovoSeven from 2 mgs to 3 mgs, things have been really good. Even when his tooth fell out recently, there was not any blood. Maybe I am over reacting a bit by thinking that the boost of his factor has been that big of a deal, but maybe it truly has helped to even him out. Christian has been through so much and a few good weeks of being a typical boy has been really nice.

We will take it when we can :)

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Monday, September 12, 2011

The Tooth

As the mother of a child with hemophilia, you always dread the call from the nurse at school. What in the world happened today?! Friday afternoon, with an hour of school left, I received that call. Actually, it was the school secretary (she steps in when the nurse is away from the clinic). My "Christian" was enjoying his afternoon snack and when he bit into his orange, his tooth fell out! There was not any blood and all seemed well, but I told the secretary to let the teacher know I was on my way to make sure everything was okay (mainly to ease their minds….they are still getting familiar with hemophilia). I walk in and here comes the teacher at the end of the hallway with Christian and his buddy "Jason". They were coming from outside. They were looking for his tooth that he dropped on the playground! Like a needle in a haystack :)

That sweet teacher went out of her way, and into the afternoon heat, to try and help my boy find his little tooth (so completely not in her job description). My heart was overwhelmed with that act of kindness. I reassured Christian that we would leave a note for the tooth fairy and all would be well (the tooth fairy did stop by the next evening).

I give thanks to the teachers who teach my children. From learning to sit and focus on an activity for a few minutes to conjugating the newest Spanish verb, I don't know what I would do without these men and women.

Teachers are not paid enough and not respected enough. We are surrounded by people who are giving information and pushing us to believe a certain way. But some of our biggest heroes are the men and women in classrooms day in and day out. Working after the last bell rings for the day and even on the weekends. Paying for supplies out of their own pockets and making sure every child understands a new concept. Going the extra mile to make sure each child feels special.

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Monday, September 5, 2011

A great day...until we came home

We have had a fantastic weekend! Getting things done around the house, spending time together as a family, eating some great, home-cooked meals and we went on a picnic in the mountains today (high of 62 degrees).

Just to come home with a bleed. I thought his ankle had swollen up due to walking around in the creekbed (it sure felt nice) but it also looks like a bug bite may have been the culprit. Who knows …… the reality is that "Christian" is having an ankle bleed. Here we go every three hours :(

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