Neurology doc came by about 11 this morning to talk to us about MRI and EEG. He said the EEG continues to show enough abnormality to keep him on the anti-seizure med. It is a very low dose and mostly precautionary. The activity he sees is not exactly like seizures, but enough to warrant the low dose of the medication. Our understanding is that it is a pretty benign med, with the greatest side effect being mild lethargy.
The MRI didn't show anything concerning as far as neurology is concerned. Endocrinology will be talking to us later about his pituitary gland. It appears to be somewhat underdeveloped and displaced, but we will have to wait to hear from Dr. Irene about what that might mean for Athan.
A physical therapist also came by and talked to us a bit about exercises we can do to make sure his physical development goes well, and pointed us to some other resources to help with that. Basically, she used come clinical language to tell us that it's good to play with your baby! :) There isn't any indicator that Athan will actually need any formal physical therapy - joints and muscles seem to be doing pretty well. We'll know more as he is increasingly alert and active, as well as watching him as the infant edema (swelling) subsides.
Also, the lactation consultant came by during last feeding and helped us with nursing a bit. He did nurse pretty well this time, so that we only had to supplement with half the usual amount. Again, I think once he is more alert, we'll be good.
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Ryan and Amberly - We've never met, but Tammy is in our SS class. Also, Ryan, you probably know our son, Chad from Fairlanes Bapt. in Borger - I spoke with him last night and ask he keep you guys in his prayers.
Our 1 yr. old granddaughter Claire also had some difficulties early - however, we had no hint of oxygen dificiency until she began having slight seizures at 6 wks. It was actually another 2 months before we diagnosed it as epilepsy - altho' that is still questionable - and got her on phenobarbitol. That took care of her seizures until 2 months ago when she became resistant to it - so, after 6 weeks of weaning, she is now on Depakene and seizure free again.
One of her difficulties was eating; severe acid reflux and spitting up; and hypotonia - very low muscle tone. Therapists have been helpful - she is just now sitting up on her own at 13 months. We are prayerful she will eventually outgrow all of this and catch up physically. Her situation was complicated by a vision problem, but that too is improving. We - our entire family from Chad and his wife, to our daughter Mandy, (mom of 4 year old Hope and 1 year old Claire), her husband and ourselves have you way high on our prayer lists. Know that God is the creator of these little lives and they are for His glory, no matter what obstacles they face.
In Christ's love,
nancy chaddick
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