Lucas James Stisher: Merry Christmas to US!

Last Wednesday Lucas has his MRI to check the shunt. Everything looks great, and it was the best MRI yet! There was one ventricle that shrunk since the last scan in June, which means more brain tissue. Dr. Yaun said this last view is probably his baseline, that we shouldn't expect it to get any better from here... the fluid in the picture that appears is all now considered missing tissue, and is no longer fluid build up (in other words, there probably won't be any more brain expansion and this is the true view of the damage done at birth). That's ok though, because he has a whole lot more than anyone ever expected. She even said "this is a very good looking brain... you can do a lot with what he has, and obviously he is showing us that!"

What a relief! I have to admit I was worried this time around. Lucas has been acting up more often lately and since headaches and crankiness are the first signs of a malfunction, its hard to ignore the possibility of the shunt. But guess what... its because he's two! Its amazing the difference in him this year versus last year. I remember always posting in the first year how quiet he was, what an easy baby he was, how he never cried. Well not anymore! He can turn "on" those tears as quick as anything, then back to a smile in a split second. Total 2-year old behavior! He definitely knows what he wants and is throwing fits when he doesn't get it. Its not exactly a fun thing to deal with as parents... but alas, its normalcy!!

We also got the report from Dr. Roman last week, such an uplifting summary of his progress. There's a lot more detail on each visual category in her assessment, but here's a few comments from the report...

"Despite his complicated history, Lucas has made impressive developmental progress. Although he continues to have gross motor challenges and is not yet walking, he is able to prop sit briefly and demonstrates nearly appropriate trunk control."

"Another impressive skill obtained by Lucas pertains to his receptive language. Lucas is able to understand and act upon an extensive list of repetitive requests. He is also able to respond to nearly as many requests when they are uttered in Spanish. It is interesting and important to know that Lucas has obtained skills in Spanish almost equal to his skills in English. These signs of receptive language learning are a great indicator of his overall potential to learn in other areas."

"Lucas has also demonstrated significant progress toward the resolution of his CVI. At our last session, Lucas scored 5 out of a potential 10 on the CVI Range. This Range is used to determine the extent of affective CVI on a 0-10 scale. Using this scale, 0 represents little or no functioning and 10 represents typical visual functioning. Today's evaluation revealed a score of 7 to 7.5 out of 10. This indicates that Lucas has now moved into Phase III CVI. In this Phase, a number of characteristics remain to be addressed, however, it also signifies that many other characteristics have been resolved."

"Because Lucas is a child who has some important splinter skills, I believe it is critical that expectations remain high and that educators collaborate to facilitate his ongoing learning."

"It was my great pleasure having the opportunity evaluating Lucas today at the Pediatric View Program. I am so delighted with his progress and feel as though his family has given him the support necessary for him to come to this point."

So, it feels like we got some early Christmas presents. Here are a few cute pics from Lucas' first time meeting Santa. He was pretty cute, kept telling Santa "hi".

Saying hello