Surgery - No Longer Delayed

The time has finally come -- the boys are to have their shunt surgery tomorrow, Thursday, May 14. The scheduled times are 1 and 2 o'clock PM, but times often change.

To be honest, Amanda and I weren't prepared for how hard this would hit us. We knew the surgery would happen eventually, but for those few days that it was delayed, the prospect of an operation became this academic thing floating out in the void, something without form or weight. The anticipation has been difficult, certainly, but we would gladly have endured that anticipation for the rest of our lives in exchange for only having to hear, "We don't need to do the surgery yet. We'll wait a little longer."

But the time has come. Knowing that the boys are having surgery is difficult, but what's more difficult is that they need surgery...that their challenges extend beyond getting through this procedure. Hydrocephalus alone can be a challenge -- it's a lifelong condition for most who have it, and the shunts will be necessary for the rest of their lives. The shunts will also prevent the boys from engaging in certain activities. Full contact sports, for example, won't be an option.

But the hydro is only part of the challenge. The doctors have diagnosed the boys with semilobar holoprosencephaly (or, HPE). Never heard of it? Neither had we. And even after talking to the doctors and doing some research online, we still don't know much about what to expect. Semilobar HPE has the widest range of results of all forms of HPE, so the boys could be looking at effects ranging from mild to severe. We're encouraged by the boys' condition up until now (good muscle tone, good functional development, regulating heart rate and respiration, etc.), and because they have been developing well so far, we're hopeful that their development will continue positively. It could be years before we know what we're facing. As the doctors have said to us, "Time will tell."

We know the boys are in good hands. They have great doctors and nurses, and they'll be at high quality facilities. Nonetheless, please keep us in mind tomorrow.