Update on Peter

A Peter update:

Peter has improved some developmentally while on the ketogenic diet.  His poor vision probably hampers his development as well.  Now he will at least lie under a baby "gym" and whack at the toys with both arms and legs to make the music go.  (Before he didn't seem to even realize he had arms to do anything with.)  So although he does not yet deliberately touch things with his hands or hold things, at least he will move his arms to make things happen.  His vision is improving slightly - I guess it's a matter right now of his brain learning to use whatever vision he has.  One of his therapists who comes regularly is giving me ideas of things to do to encourage him to use his vision.

His latest drug (started in May) looked really good for the first few days and then not so helpful after that. Because of the potential for serious side effects, and because it was not stopping Peter's spasms as hoped, we are tapering off that drug and (at the same time) starting a different one.  Please pray that something will be found to stop the spasms so that his brain can function more properly and help his development. 

We don't know for sure if the diet could be helpful in stopping Peter's spasms, because it has not ever given quite the blood levels that it should to be helpful.  Some things are being modified to see if that can be improved.  Please pray that this would work so that we can see if it would help after all in regard to seizures / spasms.  Pray too for a good relationship with our dietitian (who controls the diet), who knows a huge amount about the diet and manages it for lots of kids, but is resistant to changing things from the way she wants them (or to the parent having much control over the diet).  We tend to "butt heads" frequently over things, and I haven't yet figured out how to advocate for my child while at the same time being a witness for Jesus in my interactions with her. I haven't figured out how to be a witness in almost any of my neurology appointments, since they usually end up with me in tears over something.  Either frustration over drugs and treatments not working, or frustration with the dietitian's unwillingness to change anything easily. Or something.  I feel like I ought to be above that, serene and accepting meekly whatever circumstance Jesus puts me and Peter in, always remembering that He is in control and loves me and is wise and powerful.  And then I look at Peter and am sad over what he is not and may never be.  And I need to learn from Joni to rejoice in whatever there is good in my situation.  Which there is a lot of.

An Enigma

Peter is an enigma. That has to be ok. I have to be content to know that nobody knows what is wrong with him, not really, nor why the drugs and treatments are not working.  I have to be content if none of the drugs ever work. Content to have the almost certainty of a significantly handicapped child, mentally if not otherwise.  Content to rest in Jesus for His wisdom and care and power, rather than putting yet another vain hope in this next drug to maybe make everything better. Content to have Peter's vision never improve.

I'm not there yet.  But the sooner I am, the less agitated my heart will be.  It won't take away the tears of disappointment, frustration, and grief. But perhaps it would give a song through the pain.