I've had love on my mind...being Valentine's Day and all. One of the hymns that continually ran through my mind during the first very difficult months of Ben's illness was "Love lifted me, love lifted me, when nothing else could help, love lifted me." I was singing this all the time...in fact, James knows all the words and he now associates it with "mom's favorite song".
Tonight we are expecting another 6-12 inches of snow. If it isn't snowing, it is because it is too cold to snow! We are all looking forward to Spring...though today Chet and James are at some ice fishing derby, they were telling me that the ice is 18" thick!
A quick update with Benjamin. We saw the keto doctor Feb. 3. Benjamin's last blood work showed high ketones (7.6), initially we were told they do not like to see blood ketones above 7, but by this visit they had been seeing this trend in some of the other kids without having made any dietary changes, and some of these kids became seizure free when they hit (8). So we decided as long as he is still tolerating the diet well, we will wait and see if his blood ketones continue to climb. We did increase his daily calorie intake and made some supplement changes, both of which have given him additional energy, but have left medications and ratio alone. Ben has an upcoming ultrasound as a preventative check for kidney stones, the diet and one of the medications he is on both increase the risk for them. He will also have a CT scan, as there was an issue on his last MRI. The cyst is still decompressed, yeah! But...a small object was seen. The radiologist report said it could be a fragment of a catheter, but our neurosurgeon said it was most likely a calcification. The calcification view was confirmed by our keto doctor who also had access to the images, however it is agreed that a CT scan will help clarify this. We have been assured that the size of the object is so small that it poses no risk to Benjamin. But as I have thought, and Chet has said, "How do they know that?" As Chet and I look inside our son's brain at home due to the marvels of modern technology, I can't help but wish this same technology was giving us an answer to why? and a cure for epilepsy to boot!
What we do have...is LOVE! And for this I am so grateful!
I was sinking deep in sin, far from the peaceful shore,
Very deeply stained within, sinking to rise no more;
But the Master of the sea heard my despairing cry,
From the waters lifted me, now safe am I.
