Monday, May 27, 2013

Ronnie Was Here

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Fifty one years ago today a little soul left this world.  His life was short and he struggled, but he lost his fight.  He had hemophilia and back in 1962 in a rural, Texas town, hemophilia was not a disorder that brought a great deal of attention, so I don't know if his life was short because of lack of medical treatment, or even lack of the parents and medical professionals even knowing he was afflicted.

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Thursday, May 23, 2013

Caller ID

Remember when caller id was futuristic?  I remember thinking how cool it would be if you could see who was calling before you picked up the receiver and if I would ever be in a world where you could make a phone call and see the person while you spoke (Skype). 

Being able to see who is calling is the norm these days.  If I don't recognize the number 9 out of 10 times I will choose not to answer the phone.  And sometimes if I do know who is calling I still won't answer the phone :)  But some numbers make my heart race. 

When I see a certain "891" exchange, I know it is the elementary school.  I have a great relationship not just with "Christian's" teacher, but with the ladies in the front office and the clinic.  They all know that if they are in doubt about whether or not to give me a call regarding Christian that I would prefer them to call.  I would rather drop in to the clinic, check him out, infuse if necessary and send him back to class.

Fortunately I have a job that allows me the flexibility to run to the school when I need to.  My husband too.  Between the both of us we are able to check on Christian regularly and this has empowered the staff at his school to feel good about his care.

This week has been a crazy week in going back and forth to the school to check on Christian and give extra infusions.  We do what we have to so that he can stay in school.  We have a half day to go before he becomes a "big second grader" :)

You never know when that phone call is going to be a "little" something that you can treat with factor and a hug and a kiss, or if it is a "big" something that will change your entire day (or week) by needing to go to the treatment center or the hospital.

I hope that as school ends and summer approaches that we all get a little break from the running back and forth and get a chance to breathe.  The new school year will be here before you know it! 

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Wednesday, May 15, 2013

Kites and Play Days

"Christian" finally made it to a field trip!  His class went to a local park to fly kites and have a picnic and he didn't have any issues.  I am so glad he made this trip since he missed the previous three.  The great thing about seven year olds is that they don't dwell too much on the past, they are into the "here and now."

But now I have to weigh whether or not Christian should attend "play day" tomorrow.  Bouncy house (yikes) and games.  His ankle is swollen and even if I send him in the wheelchair, I think it would not be in his best interest.

He misses another day and another event, but the beauty is that he is looking forward to Daddy being home from his trip and going to a birthday party this weekend.

I love my son's spirit.  He is resilient, tough as nails, and the sweetest, funniest kid you would ever meet.

It's been a heck of a journey with him, and I can't hardly wait to see what the future holds for him.  It's going to be pretty wonderful :)

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Sunday, May 5, 2013

Great News!

I received an email from Webicina, a free service that curates medical social media resources and selects the most relevant ones focusing on various disease states, and my blog is one of their featured blogs on hemophilia!

I would love your help to get to the top of the curated lists that are featured on Webicina by clicking the green thumb up button on my blog name.

This is truly an unexpected surprise!