ONE STEP FORWARD, TWO STEPS BACK

Jacob has had a full week without ER and hospitalization. It's a relief and a luxury to have a full week without Children's hospital being part of Jacob's care.
Last week was pretty bad. He was hospitalized for 3 days, was home for one day, and then we were back in the ER on Friday again. Jacob caught a simple stomach bug, but the ocugolyric crises were back as a side effect. They thought he was seizing when he came into the ER, so no admission, no triage nurse - we were brought right back to the trauma unit and the doctor arrived within seconds. It was almost as they didn't believe me that he was not seizing. Benadryl and valium have worked in the past to stop these spells. This time nothing helped. For two days, Jacob was gone. I am not sure how to otherwise describe it. The spells are very short, only lasting for up to 10 seconds, but he had them for 48 hours straight - sleep or awake. Jacob's head arches back, and his eyes roll back, and you get absolutely no contact. We felt completely helpless, since we couldn't help him much - simply hold him, and hoping that the touch would reassure him that he wasn't alone in it. We were on the phone with neurology several times to figure out what to do, but no great solution. Since then, I have talked to his main neurologist, and I do feel that we have a better plan for next time they come back. The problem is that he will need an IV medication, so the hospital will be the place to be. Sunday morning he woke up, was done with the vomiting and the spells - at least for this time.
The calmness of this week gave Joakim and me time to really work with Jacob, and it is sad to see how many skills he has lost again. His head control is really bad, and his muscle tone is very low. It's hard for me to get Jacob in and out of different positions, since he needs so much support from head to toe these days. The most recent thing is also that he can't really shift position, so his arm turns blue if he gets stuck on it either on the floor or during sleep. The myoclonus in his hands has extended to his legs - constant rhytmic movements of the legs all day long.
As parents, we all want our children to do well. We all have different goals and desires, but we all want them to do well. We are way past comparing Jacob with a child his age, but it still hurts to see your child loose basic skills, e.g. head control, and muscle tone. It doesn't matter how many times you have read and talked to doctors about mitochondrial disorder being a progressive disorder, it still simply hurts. What keeps me going is that big fat smile that never leaves Jacob's face. Jacob tells us that he's fine, and we should join in in the small pleasures of life that he sees every day. There are just moments when it's harder to do so than others.