2.03.2009

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!

9 comments:

JSmith5780 said...

No clue where the North 40 is, but any time you head to the hospital with no stroller is a bad day!

Glad the local neuro has a good plan of action. Are you going to be able to get the PET locally or are you headed to Boston? Hey maybe they can get a PET and a VEEG at the same time we are there?!? Feb 23-25. At least we can wallow in misery together!

baby trevor's mommy said...

haha...to be honest I don't know where it is either. That's a Jonathan-ism.

Unfortunately we're doing everything local...but I am trying to get them scheduled for the same admission at least. If it weren't so stinkin' far...I'd say we'd come visit. Who knows...if I have respite by then...maybe we will anyway!

...danielle

Adesta said...

D...glad to hear that you got better news from Dr. Neuro than you did from Dr. Boston!! I'm sure that's quite a load off your mind and heart.

~Mama Skates~ said...

hey, maybe trevy & i will have PET scans 2gether! ;0) sooooo glad u have dr. neuro!!! we need more docs like her in this world!

Shanna Grimes said...

I second that one, Sharon. Our Dr. Neuro is the same with us too. Glad you have a plan of action too. Hope all goes well. At least the dark clouds are starting to clear a bit. There are a few rays of sunshine peaking through. Hang in there ;)

Monica, James, Connor McGuire said...

Ok, i just told James that we are moving to RI b/c I love your DR. Neuro. I'm sure it's glaringly obvious how much I despise ours. I'm glad she was able to give you some better inklings & a PLAN instead of Dr. boston's big pile of poo. I need to look up the cortical issue some more. I'm always looking for our cause with Connor. Going to the hospital without a stroller...oh brother!!

Mmmmaaahvelous said...

I love your Dr. Neuro!! She's amazing for so many reasons and I'm so excited the there are more options for Trevy, and that Dr. Neuro listens and takes action and that you travelled safely and that there's respite in your future and....
need I say more?
What a wonderful appt...yay for you both!
I hate no stoller moments....they give me hives. I once used a wheelchair at the hospital for the boys to share bc my back was killing me ( it has it's moments) and I just couldn't carry one and have the other pulling at my arm/hand too. There were lots of spares about....that's how I justified it!
Hopefully the "hurlies" are long gone from your family.

Holli said...

Can I just tell you how jealous I am that you have found such a compassionate neuro??! I'm so thrilled that she turned such pessimism from Boston into optimism for Trevy!

Holli

Molli Salzman said...

Danielle,

Sorry I have not posted in so long. I enjoy reading your blog so much!

I am so happy that you have found an excellent neuro to be on your side. It is so important to have.

Take care,
Molli