Cousins!

Cyrus had a visit from his cousin, Tangerine! She kept telling us that "Baby Cyrus is so cute!" while she stroked his head soothingly, and anytime he started crying she was quick to reassure us that "he's okay mommy." He even seemed to look straight at her a few times! 

His seizure count has stabilized around 2-3 seizures per day. And daddy proved today that he can still see after shining bright neon pink flashing lights in his face... he was very startled at first, and then pretty interested. smile emoticon

And now he's passed out with the second full blown cold in his life.

Learning to Cry

Cyrus's seizure count is way down! Over the last three days he's only had one per day! And on two of those days we're weren't even totally sure because they were so weak and subtle. 

Which gives me so much time to worry about other things - like the fact that he seems to have learned to cry. And since he usually never cries, when he does it's just so sad... 

The infant specialist that works with him every week suspects that he is cortically visually impaired, which means that his eyes are perfectly fine, but that his brain may not process the information correctly. She thinks that his vision goes in and out a bit - or that he sees in a series of still shots - the motion in-between may be hard for him to catch. I guess it's something new for me to research!

Smiles!

Cyrus has managed to stay home all this last week! His medication is working well enough to prevent any major status seizures, if not all of the little seizures and he recovers from them quickly to his happy smiling and laughing self! Mostly, we're just experimenting with amounts and types of meds.

And only after a week and a half of trying I finally got a picture of that smiling face!

Physical Therapy

Cyrus had physical therapy today! He did super well!! He was purposefully grabbing things held within his reach and was able to pass an object from one hand to the other. He finds tummy time (with a towel under his arms so he can't tuck his arm to roll away) exhausting! But he worked super hard - his reflection is apparently pretty cute (who knew?!) and the second his therapist left, he fell asleep where he lay!

Best Day EVER!

Cyrus had the best day yesterday! He spent time batting at dangling toys, babbling in his own unique language, making faces at his awful tasting medicine (he's never done this before), playing and splashing in the bath (something he usually hates!), and making himself laugh! 

He did have a short seizure this morning. But it didn't turn into a status seizure (a prolonged seizure lasting more than five minutes) and he came out of it on his own, immediately took a 27 minute nap, and woke up ready to play once again!

Back home!

Today Cyrus participated in a swallow study to insure that he was feeding well and not inhaling his food into his lungs. He passed with flying colors and so will not need a feeding tube at this time. He has been taken off the IV fluids and was laughing up a storm for daddy. Assuming he continues to do well overnight, we will be going home tomorrow with our new meds (that have worked all week) in hand and our new clearly established emergency protocols!

Cyrus did well off of the IV and we've finally made it back home!! We're settling in as the cats treat us suspiciously. 

We also got to see the actual pictures from Cyrus's MRI this morning which showed the damaged basal ganglia and thalamus, however all his higher brain functions are intact so he is likely to continue to cognitively, socially, and emotionally mature - just with weird sporadic uncoordinated movements interrupting him from time to time.

MRI

We got our MRI done yesterday. The results explain a lot of the new and strange behaviors in our son. Basically, he looks like he's conducting a symphony all the time with the way he waves his hands around constantly. Apparently, this is not voluntary movement and is likely due to damage done to his basal ganglia. We're currently exploring medication options to help him control this. Luckily there are some meds that help control this and fight seizures simultaneously.