doesn't even begin to touch how we feel after our 48"ish" hour hospital stay...
which means mommy's creativity meter is running low...so I decieded to do a picture story instead...
watch out ninja turtles...here I come...
mommy & trevor smoochie facing
pretty providence
mommy & trevy enjoying to view from 6 stories up
Project Linus donated little cloth toys & the red blankie for you to play with...
sweet dreams - the essentials for a good test
we were *hooked-up* with toys too!
coming un-glued
love the do little man
so at the end of the very long hosptial stay...we're back where we started.
You're still having spikes from your left temporal lobe - your MRI is still inconclusive -
you're still not sleeping well -
you're still our beautiful little monkey
- and we're still wondering what the next step in our saga is.
Hopefully we'll find out Jan. 28th.
13 comments:
My thoughts are with you and Trevor as you go thru this journey.
Thanks Greg!
btw...we're celebrating with your cutie as she's stickin' her tongue out at the IS odds!
...danielle
The hairdo looks very familiar! Trevor is such a doll. Don't worry about those spikes....we're praying for Trevor to overcome. Keep the faith. Getting the vision is half the battle. BTW...my kids wrote the cutest prayers in the chapel book at Hasbro.....you have to read it sometime.
Rebecca
Can you believe we've never been in the chapel!? Bad missionaries! :O)
Thanks for the prayers...we're using them all up...and sending some of our own!
...danielle
btw...he STILL has glue-head even after multi-shampoos & baby oil treatments! My hubby thinks I'm nuts to take him out in public...but I say *wear it proud wear it loud*...and when people comment on cradle cap I get to make them feel really awful! LOL!
I'm SO mean!
...danielle
Hey Danielle,
What is January 28th? We love you.
Jenn
we see Trevor's girlfriend - ie. neuro - on the 28th. We're hoping she can guide us how to move forward from here...there are other tests & meds & options...we just need guidance.
xoxo...danielle
I hate to admit this but he really does look pretty cutsie with the back cap and head cap.
Agreed!
I keep telling the hosptial staff that he can model for them...start paying for college now...that's what I say!
xoxoxo...danielle
I hate that glue! Oil and a soft toothbrush are the best bet. If you are desperate , you could use a little bit of nail polish remover. The kids HATE it though.
It's so hard looking at the pictures. I know how much Austin hates every EEG he has. He's a trooper though!
Refresh my memory...still some spikes, but no seizures right? If he is SF, give it some time and the EEG might clear up on it's own. It's been known to happen.
Jen
AustinBenConnor
You know...outside of having babies we've never been in the hospital. Until all of this! Now it's like once a week...ugh!
I finally got all the glue out...poor baby hated me picking at it. And Toby & Bristel are little pickers too...so pickin' the glue out was a family event! :O)
Interesting...our neuro didn't tell us that his EEG could possibly clear on it's own? I wish I could make my heart believe... It's hard tho...every EEG (even the one with hyps) had spikes coming from his left temporal. It's hard to believe there isn't something there, ya know. We're going to push for a PET...kinda a last ditch for now.
Anyway...I anestesized w/clothes today! Finally found the perfect winter coat...and jeans...and shirts...and... :O)
...danielle
The neuros just don't know everything. They can guess and suppose all the like, but the brain is it's own entity.
At times I struggle to think we are four years into our journey. I have come to accept that his EEG may never be completely clean. He still have the occasional spikes.
I assume the MRIs they have done have all been done with contrast (gadolinium) right?? They only saw Austin's brain lesion with the gado, couldn't see it without. Austin ahad a PET done in Boston...unfortunately those results didn't match up with his EEG or his MRI :(
One of the neuros here told me that some kids, like Trev, have spikes in their EEG but go on to develop normally. Of course, he was unwilling to make promises or even hand out numbers. And he likes to stretch the truth - he's the guy who told me Vig would make Trev blind! We kinda don't get along.
And I'm fuming about the MRI - I just learned that the DIDN'T do a contrast! Unbelievable! Why the heck go thru all the trouble of scheduling a sedated MRI - only to not have it complete!
We meet with our neuro on the 28th - that will def be a topic of conversation.
Anyway...in the meantime I'm trying to relax & enjoy the progress he IS making. And to just trust that Someone knows & is in control of what will happen in the future anyway...
...danielle
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