Levi has tolerated the change from formula to milk very well. We began by adding 1/2 ounce of milk to his formula, and increased from there. Today at lunch he had his first bottle of only milk, with rice cereal, and did very well, so he had all milk at dinner as well. So far so good! In a week or so I will begin weaning the rice cereal from his bottles. It will be very nice to be able to buy regular nipples, rather than the Y cut silicone nipples that stretched out so fast, or cutting bigger holes in regular nipples.
On Saturday night we increased Clobazam from 5 mg to 7.5 mg, and decreased Phenobarbital from 7 ml down to 6. That first night he was already totally wiped out by the time he finished eating, and took a long nap, which of course ended when I was ready to go to bed. lol He's taking long morning naps again, but this afternoon he was very bright eyed and smiley. Pretty floppy, but definitely happy and alert! It takes a few days for his body to get used to the new dosage.
Last Friday our PT brought a gait trainer, which is an adaptive walker. Patrick calls it his Mustang. I've been excited about this because Levi is doing very well walking with me. His legs are ready to learn, but his upper body is still pretty floppy. He likes the gait trainer! We have it set to lean forward a bit. He is standing up and leaning over a large tray, which we put toys or swirly mats for vision therapy. The most amazing thing is that it's really helping his head control. Instead of letting his head loll forward, he is picking it up and looking around!
That brings us up to date on all the changes going on right now. I'm excited to see how the seizures and his alertness are affected by this latest med change, and the things he will learn from the gait trainer. Please continue to keep him in your prayers!
On Saturday night we increased Clobazam from 5 mg to 7.5 mg, and decreased Phenobarbital from 7 ml down to 6. That first night he was already totally wiped out by the time he finished eating, and took a long nap, which of course ended when I was ready to go to bed. lol He's taking long morning naps again, but this afternoon he was very bright eyed and smiley. Pretty floppy, but definitely happy and alert! It takes a few days for his body to get used to the new dosage.
Last Friday our PT brought a gait trainer, which is an adaptive walker. Patrick calls it his Mustang. I've been excited about this because Levi is doing very well walking with me. His legs are ready to learn, but his upper body is still pretty floppy. He likes the gait trainer! We have it set to lean forward a bit. He is standing up and leaning over a large tray, which we put toys or swirly mats for vision therapy. The most amazing thing is that it's really helping his head control. Instead of letting his head loll forward, he is picking it up and looking around!
That brings us up to date on all the changes going on right now. I'm excited to see how the seizures and his alertness are affected by this latest med change, and the things he will learn from the gait trainer. Please continue to keep him in your prayers!
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