Thursday, June 19, 2008

Sigh of Relief!

Imagine this:

Sitting down at your computer and opening up an email that the subject line says
Re: Daniel S.


Do you feel dread too?! I did!

Opening it and reading this:


Hi
Good news! Everything looks good.
EEG - no epileptic activity. Background waves a little slow - that's because of the syndrome - doesn't worry us at all. And both VEP and ERG are normal!
Let me know if you need anything else.
Kathy


As my daughter would say "Hells yeah!" Me I just sat there and re read it about 5 times, cried and then got up and did the happy dance! It you're not sure what the happy dance is, click here!

Yesterday we went to the hospital got all these tests done and Daniel did not like them one bit. I actually broke down and cried in front of everyone during the second test because he was so upset and they had to give him medication to relax him. Hell I'd be upset too if I was strapped to a stretcher and my arms taped down not being able to move for over an hour. Plus he was overheating from being wrapped up and taped down and screaming. Just got to me this time, just how shitty it is that he has to go through this crap. I know there are other children out there that have to go through far worse then we do. And my heart aches for you, it really truly does.

This was Daniel's 3rd clean EEG since he was on ACTH. This means we can now start to wean Daniel off his seizure medication and the only meds he will be on is for drooling and constipation. Which if I can start to get him to eat things like prunes and such, we will be off that too.

So, 6 weeks from now...Daniel will be off Vigabatrin (hopefully for good!) NO MORE INFANTILE SPASMS. Now please realize that I know we are not completely out of the woods because with his brain malformation (CBPS) seizures will ALWAYS be a great possibility. I know this. But for right now......they are frickin' gone!!

This also means that we can start back up on the TES therapy, the TENS therapy, and the VitalStim therapy! I will hopefully in a few months have a little body who has a stronger trunk, who can swallow better than before, and who will be more alert and aware because he is mostly drug free.

On another note: Daniel started doing swim therapy and he isn't screaming like he was a month ago when we first tried and had to stop because it wasn't productive!! I'll post pictures later of that one. I have to get his therapists permission ;)

9 comments:

Melissa said...

Wonderful news! So happy for all of you, especially Daniel!

Did you really do the happy dance, just like the Hippo? Cause if you did...we want to see a video of it! LOL kidding.

Again, GREAT NEWS!

High Fives all around!

Anonymous said...

That is FANTASTIC!! YAY Daniel!!

I am so happy for your whole family!!

Stephanie

Melanie said...

LOL really you don't want to see me doing the happy dance! It is a scary image that will forever haunt your nights!

C said...

Go, Daniel, go!

We're all cheering like mad.

Justinich Family said...

Way to go Daniel, that is the best news.

ummmhello said...

Wonderful news!!! I'm doing the happy dance for you guys!

laila said...

YEAH...WTG- Daniel!!! I too want to see a video of you doing the happy dance,lol!!! Thats antastic news- Im so hppy to hear that he is seizure free and weining those meds- hugs

Anonymous said...

yea! I loves me some Daniel!

Gracie's Mum said...

HI Melanie I've been directed to your site by another CPecial parent, to read Dr Moses' paper on grief. Very powerful.
Reading on I note Daniel's eeg is clear of Infantile Spasms. Wow! That is incredible news! My darling 3 year old has infantile spasms also, no siezure activity but huge disturbance on all eeg's. Does this mean kids can grow out of it?
Also I'm interested to hear why this means Daniel can resume TENS therapy. We have a TENS machine, sold to us by Princess's HBOT therapist, but I've never used it. Maybe that is a good thing? Did my instinct tell me not to? What's the story? Can you fill me in please?
My darling girl, called Grace, not Princess by the way, has moderate hypotonic quad CP, GDD, CVI, microcephaly, epilepsy and an IQ less than 55 to boot. Non mobile, non verbal. All due to hypoxic brain injury. Braccycardic during labour, emergency c section, resusitated and heart massage etc etc. The good stuff is Gracie is a joy, (mostly!) Happy, heathly, evil giggle, fun to play with and totally gorgeous.
I agree that life sucks sometimes, and I had hoped for so much more for my first born, but, its ok. Grace has exceptional quality of life, no pain, other than constipation, lots of love and more kisses and cuddles than anyone i've ever known. She is universally loved.
Ocassionally I have a bithc, when someone patronises me, and thinks our life is somehow easy, just becasue i try to make it look that way. Well you have to make the most of it! Will whinging and crying every day get me anywhere? Waste of energy I reckon.
Anyway, enough about me.
Thanks for sharing and I hope you can help me with the TENS question!
Stay well
Susan