weary days

It's easy to be discouraged lately. To not fix my eyes on Christ but rather on my surroundings.

In December Peter was put on ACTH (like a steroid) which lasted 10 weeks before he was totally off it - in an attempt to stop his infantile spasms. This works for lots of kids, but wasn't much permanent help for him. Instead we got 2 months of a sad and miserable Peter who was hungry all the time and did not sleep well. His spasms (which are like seizures) improved while on the ACTH, but now that he's totally off it, they are almost as they were before we started treatment.

He's been on 2 anti-epileptic drugs, which did nothing for the spasms, although one of them seemed to stop his other (longer) seizures from occurring. Since then we have received results from a gene testing panel that was sent off in December, and the one gene that showed a problem was one that causes a person to have glucose transporter deficiency (glut-1 for short). This means that the protein that transports glucose into the brain is not functioning properly, so the brain does not get the energy it needs.

The one and only real treatment for this is to put the person on the ketogenic diet, or some form of it, so that the body burns fat instead of carbs (glucose) for energy. The resulting ketones in the blood can then be used by the brain for energy.

We do thank God very much for granting us this diagnosis so early in Peter's life, as many kids are not diagnosed till years later, after the time when the brain most needs its energy for growth.

So Peter has started this ketogenic diet. It's mostly fat (oil and a special formula). However, he wasn't drinking the volume of fluids recommended when having this diet, so he has ended up with a stomach feeding tube (g-tube). Theoretically he can still take things by mouth, but I don't think he likes the taste of what he's eating, so lately he won't take anything by mouth. Which is frustrating to me, since he needs the oral stimulation of eating and nursing to help his future speech development. And, I haven't seen much if any benefit from the diet yet, which is also discouraging. For some kids it takes longer to work, apparently. It just makes me wonder if this is really the thing to do. But we really don't have any other option.

Also his vision is pretty bad. Probably they would call it CVI (cortical visual impairment), which basically means the brain is not interpreting what his eyes see correctly. Possibly he also has optic nerve problems, which would make the issue worse. We know he can see light and bold patterns, but he doesn't respond well visually to the world in general.

At least he is generally happy now (a wonderful change from his first 8-9 months), and opens his eyes a little more than he used to. And he does smile some. I'm thankful for those things.

It's easy to forget that in my trials, the Lord is yet "compassionate and merciful."
"Indeed we count them blessed who endure. You have heard of the perseverance of Job and seen the end intended by the Lord—that the Lord is very compassionate and merciful." (James 5:11)

O to remember that. And that heaven is not far away.