more than a patient

We have always had a special connection with our Dr. Neuro. I can't explain it. It's just something I feel. It helps that she positively drips with love & hope for Trevy. That's huge to (has a tendency towards pessimistic) me. And makes me wish I could clone her for other IS families.


So last week when it was snowing like crazy on appointment day...I called her nurse all frantic. I NEEDED to meet with Dr. Neuro. To get her thoughts on Dr. Boston's. The thing with specialists is...if you miss-ee...you wait-ee. To the tune of three months. And I could not wait three months.


Dr. Neuro called me shortly after Nurse Sue & I disconnected.


I blubbered everything. Obviously more than a little affected by the previous day's appointment.


And that was when she said the words (to get the full impact I must insert that she has a distinctively adorable Hindi accent) that moved me to my core...


"Listen Danielle...you & Trevy are more than just a patient to me!"


My eyes spontaneously misted.


"And you're not waiting three months to be seen, Silly...you'll come next Tuesday. Okay?"


Heck yeah!


You'll never guess the forecast for this Tuesday though?



Grrrrrrrrrrrrrrrrrrrrrrrrr...snow.



Eternal stinkin if I have to shovel one more time I'll lose it snow!



Thankfully the white didn't start stickin' until we got home safe & sound. And I'm totally down with letting Jonathan man the shovel when he gets home tonight!


::smile::


The meeting today was MUCH more positive than last week's. Dr. Neuro completely disagrees with Dr. Boston on the LGS issue. Trevor's EEG is not indicative of LGS at this point. She has always always believed that Trevor has cortical dysplasia. And she still does.


She showed me the (yes...there is only one...but you gotta start somewhere) case study of a child with a similar history as Trevy. Including PVL. Which Dr. Boston adamantly argues is always associated with bilateral damage. But a PET scan revealed that the child in the study had damage contained to his right hemi. ie...he was surgical!


Which is why she included a PET scan in her Trevy-to-do list.


The Plan:

• 24 hour in-patient VEEG
• Increase Vigabatrin to 1000mgs am & 1000mgs pm
• PET scan
• See a Developmental Pediatrician. Trevor's delays are more glaring the older he gets. She puts him around 12 months cognition & speech. Trevor will be two April 3rd.
• Increase his Speech Therapy to once weekly
• Full work-up at the lab. Including a Celiac screening (someone owes me Chinese for dinner! ::wink::)
• And then meet again in three months & go from there

Shew! I'm exhausted. We had the" hurlies" all weekend. That was fun. And then Bristel's 4th birthday was celebrated! I'll post pix. Eventually. And today I parked (in the North 40) in the parking garage to avoid having to sweep off the snow. Only to open the trunk and find. No stroller!