Lydia Eileen

Lydia went two complete weeks without have any big seizures. We were internet quiet because there just wasn’t a lot to say - she was doing wonderfully. We had a wonderful Halloween (as you hopefully saw from the pictures) and we went to church. Let me just tell you - going to church when you haven’t gone in several weeks because you have a baby who the doctors told you would probably not live to the end of October, but then you take her to church on NOVEMBER 1st, a day you never thought she’d see - boy, that’s a perfect storm for all kinds of weeping. It was an amazing weekend. And an amazing, blessed, peaceful, joyful two weeks.

The seizures started back up again today, complete with the not breathing thing she does. Interestingly enough, we have been in touch with a doctor in Maryland who is the leading doctor for Zellweger Syndrome and has seen more babies with it than anyone in the world. He told us that it isn’t uncommon for babies with ZS to have stretches of time with seizures and then stretches of time without any at all. We’re hoping this is just another short stretch of seizures and that we still have many good days in store.

Having finally found someone who has seen more than one or two cases before, we have inundated him with questions. Unfortunately, there still just aren’t any answers. We want so badly to know how things will progress or deteriorate, how we can see anything coming. He told us that there’s absolutely no way to predict what will happen - every case is different. He said she’s just going to do what she’s going to do, despite whatever we might try to do. Knowing that we can’t know what’s coming is both an encouragement and a huge pain in the neck all at the same time.

Next week we have appointments. Monday Lydia has a routine cardiology check-up for the hole in her heart. Tuesday, we return to Yale to get a “button” put in instead of the dangling g-tube. The procedure is pretty simple and quick, but of course they warn you of all the potential problems. One is that her stomach could separate from her abdominal wall if the scar tissue hasn’t healed correctly. Please pray that this isn’t a problem and that everything goes smoothly.

Two weeks of no seizures - a blessing but also kind of a tough thing for me. It makes me forget that she’s really not OK. During a good day I think about how normal everything feels, and then I remember how very not normal it is and makes me break apart a little. Yesterday I hit the “this is so unfair” wall pretty hard and I’m having a tough time bouncing back from it. But we keep holding on to the good moments, thankful for each one and hopeful for more.

We just recently painted one of our walls with chalkboard paint and a friend inspired me with her chalkboard wall that she writes a new Bible verse on every week. This week, we have up Isaiah 33:2: “O Lord, be gracious to us; we long for You. Be our strength every morning in time of distress.”


And He is.