It was exactly one year ago today that Ethan had his port surgery. At about this time, Ethan wasn’t long back from the recovery room… Likely still snuggling in my arms!
I can’t believe the difference Ethan’s port has made to the quality of his life – and ours!
We have a routine; and a good one at that!
Like I’ve said a thousand times before, this has become our normal… In fact, it’s ALL we know!
In between morning showers, getting dressed for day care, eating breakfast, and packing lunches we take ten or fifteen minutes out of our morning to access Ethan’s port so he can have his dosage of Advate (Factor VIII replacement). This happens three times a week in the comfort of our own home.
And while it may sound like an inconvenience to some of you, it is NOT.
It’s not an inconvenience when you can see how ‘normal’ it lets him be.
We are so blessed to be able to provide Ethan treatment from home rather than having to rely on a doctor to do this.
In ONE year, Ethan has had 158 infusions at home!
That would mean 158 trips to the doctor.
Because we were given this option, Ethan can run and play like any other 21-month-old.
Ethan dances on the kitchen table and jumps off the couch on a daily basis. This winter Ethan tried sliding and skating for the first time (and it certainly won’t be his last) and had his first ride on his Daddy’s ATV.
If it weren’t for Ethan’s treatment, we wouldn’t feel comfortable and confidant in letting him do these things! It really is a blessing.
Some people ask how we do it… Some people ask how we feel about poking him with a needle every other day. A year ago I didn’t know how to answer that. A year ago I didn’t know how I would ever build up the nerve to poke my own baby with a needle… But after realizing how much it benefits him and helps him, my thoughts are: “SO WHAT!”
We quickly realized things can be so much worse.
We would do this every day if it meant Ethan living a ‘normal’ life being able to do all the crazy things toddlers love to do without risking his health and safety… Or our sanity, ha ha!
Kerilynn
Ethan’s Steps: A Walk with Hemophilia 
Ethan is a lucky little boy to have such great parents, and Bill and myself raised 4 boys so we know how how much energy they have, keep up the good work he is perfect little boy.
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I need to meet this little cutie in person. He’s such an inspiration! I worked with his nan and pop smith and got to see his journey because of knowing them. You guys have a special little boy!
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Thanks for the update on Ethan. You are so right about all the trips you would have made to the hospital but for the port. I recall some 30 years ago spending endless hours at Emerg waiting for treatments and usually by then some damage was already done. Wonderful that he is learning to skate, a sport unheard of years ago with a severe bleeding disorder. He’s a sweetheart and keep up the good work.
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