During the last couple of months Kalle's urine was tested three times. It's important for all kids on the ketogenic diet because they get kidney stones much more often than other kids. The test didn't look okay twice, but was okay the third time. An ultrasound of his kidneys looked fine. What a relief.
We participated in an interesting workshop: Saito, a japanese massage technique for special needs kids. It's all about loosening up the muscles by shaking them so the kids feel more relaxed. If they feel relaxed they are more alert and more capable to learn. And if you loosen up the muscles around the spine it's good for the development of your brain, they say. We're not sure if Kalle really liked it, but we will try Saito for a while. It's supposed to be fun, not a strict routine. We'll see.
We let Kalle drink out of a cup at least once a day now, just to practice. His record: 100 cc! Not bad :-) He still gets five bottles a day, but within the next couple of months we want him to use the cup instead of the bottle. He will loose his sucking reflex at a certain moment. So we have to practice drinking from a cup now if want to avoid a feeding tube.
The pediatrician wants to check Kalle's groth hormone level cause he is way too small for his age. They tried the test half a year ago. It didn't work cause it's extremely difficult to draw blood from Kalle's very hard-to-hit veins or even his fingers. This time the test didn't work out because they couldn't check his blood pressure (difficult if you have a little more fat around your arms). So we still don't know if he has enough growth hormones. It's important to know cause it influences the way the bones grow. Not enough hormones might result in serious problems, not only in a smaller Kalle... Today they took a photo of his left hand, in order to check the bone age. This might be another method to see if something is wrong. Or Kalle would have to spend a day at the intensive care unit where he would get an arterial line to draw blood and check the blood pressure at the same time. The doctors are still thinking about the next step.
No, we are not getting used to all those doctors appointments, the daily worries, the unsecurity, the sadness. We are happy if we see just a glimps of Kalle, between those stupid seizures. He still loves to drink his bottle, he stretches his arm and lifts it if it takes too long to move the bottle to his mouth. He recognizes it, he makes sure we understand that. Beautiful. We hope to see ore of him in the future, but we are not sure if this is just wishful thinking or if it will become reality.
