roll call
 

It has been so long
I am hoping all is going well with each of you and your dear sweet children

Austin is now moved into his apartment right next to college he starts college this Monday
he moved there 2 weeks ago that same day as moving he had a Neuro appt. following a 3 day ambulatory EEG,(4 days wired for sound) we as always were hoping they would find he had no seizures and he could go off seizure meds, but instead they found Austin to have both Seizures and a movement disorder so Austin started college with 2 strong meds, his seizure meds and Sinemet, so instead of just college worries, we are all worried about the side effects of this new dopamine med. and the real worry is what this is all progressing to. but as Austin always does we talked and as he said he is no different then last month so, he will just keep going on, this was a blow we were not expecting.
Austin's Apt is nice real big with 2 pools a weight room Jaz. he has washer and dryer in the apt. and 3 roommates, he got a new computer, all his books, the college is offering him some services and he has taken the public bus all over and feels comfortable going to Balboa island, Newport and Huntington beach on his own, he has a roommate who also has no car who has gone with him too. in his neighborhood in walking distance is everything, stores, drug stores, his bank, P.Office and the college, his roommates know about him and were more concerned on if they might see a seizure, then what to do, they are young and very able to call 911, my family, father and Aunt live 20 to 35 mins away we have plans and notes in place. They check on Austin and take him to lunch….so off to college Austin goes
I could not be more proud, worried and miss the hell out of him
how are all of you? I have thought of you all so much......
next...

Hello All
 

It's me, Heather (formerly hedda). It has been so long, I couldn't remember my password, so I did this instead. Been wanting a different user name anyway.

Megan is pluggin' away. She is finally taking steps that get her somewhere besides on her butt! She has had a couple seizures since the crash, and we actually avoided one... because she is showing some pretty hard to ignore signs before hand!

Chris and I both have new jobs... he is a security guard at a college nearby. I am now a 3 year old preschool teacher. We both LOVE our jobs, but we don't get to see much of each other because he works 4pm-midnight, and I work 8-4pm. That's what the weekends are for. I am also taking college classes on line.... What was I thinking?!?!?! SO, sleep is a luxury for me right now, but I love it. Since Chris works at the college I am enrolled in, I get a discount on tuition, so how could I pass that up?

Jack wanted so badly to go to school this fall. He is 3 1/2. :eek: I didn't want to enroll him in my preschool because I would probably be his teacher, and I didn't really think that would work. So maybe next year.

Who's next? And, it is SO GREAT to be "back".

Hey Roomies!
I'm here... once I figured out that I needed to redo my registration. For those of you who may not have noticed, this in NOT John Lesters original BT forum but a new forum using the BT name. So that is why we had to register again.
Anyway...........................
We are still hanging in there. Hannah has been diagnosed with Dysautonomia (basically means her autonomic NS doesn't work properly) and her older sister Kate with Rheumatoid Arthritis. Never a dull moment I'm afraid. Hannahs cardio (yes we have one of those now too) is arranging for us to take Hannah to the Mayo Clinic for further evaluation. So we are waiting for a call back from them. Not much else to report.
I missed you guys and am glad to see old friends as well as new faces!
love and hugs,
lisa

I am here, having a few issues so I am headed to the NS office in a few minutes. Hoping everything is fine.

I finished school on the 16 of August and I am presently looking for a job.

LIfes never dull with me.

Suzie

Hellloooooo! :D Great to see everyone again! I went into hospital two days after it shut down. (This site, that is, not the hospital! lol). I've had a rough few weeks but feeling a bit better now; my VA shunt was overdraining and I had to wait 4.5 months for my revision operation and during that time my vents collapsed (but I hadn't realised; just felt awful). Had my full VA to VP shunt revision which went fine but problems with pressure after; first it went too high, then after several (painful) adjustments, too low. Now they're very gradually increasing the pressure by one notch at a time. I've been home for 2 weeks. Also had dreadful stomach spasms caused by trapped air bubble when they inserted distal (?) end of shunt. MAN, that hurt!! :eek: Didn't count on my stomach giving me such horrendous pain - thought the head would do that! Still trying to get stomach under control. Been in touch with HailiesMom a lot; that poor Hailie has had the most difficult time and they're still trying to get her better. I'm sure her mom will be along here soon. But really pleased to be able to say hi to you all again and find out how everone is!

Roll Call
 

Hi all..it's been SOOO long. Thought the original was back up again, last I heard (YESTERDAY) was they were waiting for some Mac OS CDs to come in the mail to restore everything. Sounds like that'll be up sometime in September, if you go to http://brain.hastypastry.net, there's an updated message as of the 22nd or something.

Anyway, I've been dying to share the news. I FINALLY got my programmable! It's a Medtronic Strata (I thought some of you guys had those, I don't remember). He was originally going to swap out the old VP I have, but due to the 22+ yrs it's been in, it's become a "part" of me I guess. Too much scar tissue to risk it. My neurosurgeon says it shouldn't hurt being in there. It's still on, but he doubts after so long it's totally functional to its potential. There was just too big of a risk of brain hemorrhage to pull the old shunt out.

The cool thing is, he NEVER did any ICP Bolt or lumbar puncture, so I totally got out of that icky experience. He did a trial of having the old shunt OFF (I have an OLD Medtronic MultiPurpose Valve with an on-off button). His idea was to see how I was with the shunt off for a week, BUT I didn't make it to 48 hrs without getting it turned back on. So, obviously I am shunt dependent. Really having a rough time of it through the healing process though. Nauseous a lot...not sure how normal this is as it's only my 2nd revision. Last one, I was 5 yrs old. I'm 29 now.

The sad part in all this, I lost the job I had just over 2 yrs, the day I went in and told them I was going to need off for the surgery. The department I was working in got shut down. I was in Business Development, BUT I also did some sales and stuff. They chose 2 people to go into Sales for smaller accounts and I got let go. I made over 80,000 in sales since the beginning of this year for the company. My best friend got picked who was right up there with me in amount of Sales. and so did this other girl who was pregnant, but DIDN"T EVEN COME CLOSE to the amount of sales Eric & I had...I think it was because of having so many medical appointments, with my neuro trying to figure out what was going on with my head....I'm pretty bummed... :(

We're here
 

Hey everyone. Glad to be back. Congrats hedda, thats why I haven't heard from you lately, sounds quite exciting. I am anxiously attempted to secure employment, with little success. Hailie has had lots of problems since June resulting in 7 revisions, 1 cranial expansion and 1 fenestration. She's not doing so well and we will be heading to the hospital on Wednesday. She is experiencing increased headaches, lethargy, and severe side pain, its been building for about 3 weeks now and her bradacardia still isn't dangerously low or we'd already be there. She could probably go sooner but my 17 y/o Courtney has a celebrity make-over and senior pics taken tomorrow(Tuesday), we've rescheduled twice this summer cuz of Hailie's health and I am trying not to disapoint Court again. Anyway, Hello everyone, we missed you much.