The Scoop

There are so many details to our story, oh where to begin. I thought I would work from today, and as time allows share our journey backwards.

As of today, Eamon is without an underlying diagnosis. He has hydrocephalus ex vacuo, which means there is increased spinal fluid in the ventricles of his brain, cushioning and protecting the decreased amount of brain tissue present.

He has hypotonia, low muscle tone through-out his body. This condition, in particular, causes much of Eamon's current problems. The weakness, or floppy nature, effect every normal function of his little body. For example, his ability to take full, deep breathes is compromised because his chest muscles are so weak. Therefore, Eamon requires supplemental oxygen. He has a g-tube, feeding tube directly into his stomach, because there is a great potential for Eamon to mis-swallow his food (into his lungs). The mechanics for swallowing are there, but slow and sluggish. Eamon fights constipation because there is low motility of his bowels. He has a very hard time clearing his oral secretions, so he sounds gurgley. His cough is just not strong enough.

And lastly, Eamon has infantile spasms. This is a seizure disorder very specific to little ones. It is under control, his last EEG showed no seizure activity - Thank You Jesus! However, Eamon takes a high dosage of vigabatrin daily which has the potential to cause peripheral vision loss.

Certainly, there are many areas of concern, but no real understanding as to the reason. Some days, that is a blessing. There are no words spoken over his future, limiting him or our ability to remain hopeful. But on other days, it feels lonely. Eamon does not fit neatly into a category. That can be hard on me, his mommy, who is sometimes looking for a guidepost, or at the least a fellow traveler who can understand where we are, and maybe where we are headed. Even as I write this, I am reminded that indeed I always have a co-traveller. God has said, "I know he plans I have for you (Eamon), declares the Lord, plans to prosper you and not to harm you, to give you hope and a future." Jeremiah 29:11

Eamon comes with a lot of bells and whistles. He is usually connected to an oxygen supply, his foot lights up with the probe for the O2/heart monitor, and every four hours, for an hour, Eamon is connected to a feeding pump. It can be quite a mess of wires getting tangled and restricting how freely we move around our home. We often joke about our dream to have a wire-less baby.

The background "music" of our home is the beeping of Eamon's monitor, the hum of the pump, and on certain nights the gush of air from a bi-pap machine. Such noise, we all have become a bit immune, only jumping to check after several beeps.

There are certainly no shortage of prayer requests from us. I want to thank you for the beautiful part you play in our lives. For Eamon, simply being, is miraculous ( I'll share some of those details another time). And, we have such expectation for how God is going to continue to make all things work together for Eamon's good, and ours as a family.

Beep, Beep, Beep...I hear it on the monitor, the sweet sound of my little man calling for mama -his voice for now.