Thursday, June 2, 2011

Finding my way back

I've been trying to talk myself into posting an update for weeks now. I just get in these phases where I want to be as far away from seizure talk as possible. Reminders are not my cup of tea lately. What a year it's been.

Anyway, I got to thinking about my family that I may not keep in touch with like I should. Family that love Austin and want to be in the know and this is the primary source for them to keep up. A lot has happened since my last post so there's no reason for not updating...

First off, we WILL be going to Detroit. Looks like we'll be leaving July 12 and returning July 15. He will have two tests and a visit with Dr. C. An AMT PET scan and 24 hr VMR (EEG). I honestly can't remember whether or not we knew at the time of my last post that he wanted us to come up for testing. Anyhow, he does. I asked him what he was seeing that makes him think they can help and that surgery is a possible option. He responded that they are seeing widespread malformations throughout the remainder of Austin's left frontal lobe and that he underwent only a small resection in that area that did not get it all. The AMT PET is supposedly good for detecting and differentiating between abnormalities and scar tissue. Since Austin has already had one surgery, the scan may aide in determining whether what they are seeing is scar tissue or in fact brain abnormalities.

This is NOT the best timing for us to be going. it ever? When is one ready to forge ahead on something like this? Especially when that path has been taken once before and it led to nowhere? I thought about waiting until closer to the end of the year, just to give us more healing time. It's now or never though. There's no sense in putting off more emotional stress. It will ALL have to be dealt with regardless. Sooooo....~sigh~

I've been scouting airfare and hotels...waiting to hear the last final detail so we can book (our actual appointment time with Dr. C on the 15th -supposed to know this week and NEED to know so we can plan our flight out). As of right now, it appears we may end up spending less on 3 tickets than we spent on two the last time we went (Austin was under 2 at the time, and with seats at $600+/ea, he rode in my lap!). Hopefully...fingers crossed it doesn't jump up before we get the final word from Dr. C's nurse. The hubby's working overtime to help cover costs -thank goodness it's available right now, perfect timing! NO CREDIT CARDS THIS TIME!!! lol

In other news...the head looks to be healing nicely. No surgery required but we're keeping it covered to prevent future scratching. It stopped draining and started to scab over just in time.

We're also into Week 3 of respite!!!! OH...I can't even describe the relief this has been! I have one of my very best friends helping me out and it's been absolutely wonderful! It's taken me a while to even realize the possibilities that this opens up. Things I completely forgot about or had written off because of lack of time or guilt. She is doing amazingly well with Austin too, so I couldn't be more excited about the way things are going in that department.

I know I've lost touch with my Blogger friends lately. I've been horrible about updating and I haven't been reading either. Trust me when I say I've never been more overwhelmed than I am right now. I miss keeping up with all the precious kiddos, and I thought I was finally coming around in March...getting back into the rhythm. Before the bomb dropped. I had a new, healthy outlook on my life and the letdowns we've endured, but I never imagined having to start all over. Now I'm just trying to find my way back to our "normal".

Anyway...that another blog and another topic...


Jamie said...

Its nearly 11pm in Ct land...I just layed my Madie to bed about 930 Then jumpimg out of bed I hear strange noises from her room...A big bad seizure was going this 700 Dollar a month diet working or what?????
I feel as if I need a glass of wine to calm me back to sleep...reading about Austin tonight makes me wish we lived closer. Detroit is a ghetto fabulous place for sure...look for that "f-word" spray painted on the Subway..LOL And dont eat the shitty cafeteria food! LOL We were blessed to have family living outside the city to stay....Dr C is a great guy for sure..madie was not a surgical candidate when we went but it was nice to get some needed info. Did he do Austins 1st surgery? Ok enough of me...I really better get to sleep.Im glad to see an update stranger!
keep us posted. Hugs.

Reagan Leigh said...

I agree with Jamie...Detroit is quite ghetto. Don't walk around alone. My husband, who is quite menacing looking himself, was afraid to walk down the street near the hospital. FYI, Continental has a program to provide flights for children receiving medical care. They paid for 2 of our 3 flights to Detroit (it's one of the few programs not based on income). Let me know if you need more info.

Holli said...

Yes, Tera, I would definitely like more info. I wonder if they would contribute even if we are just going for testing or if he has to be going to receive treatment.

Holli said...

Jamie -HUGS!! Long time, I know. Long story...But, no, Austin's first surgery was in Houston. We went to Detroit about 2 yrs ago but tests were inconclusive at the time. We didn't roam around too much in Detroit, just when we got lost and ended up in Canada! lol We were actually totally surprised at the hospitality everyone showed us while we were there...except for the border patrol, of course! ;) Hugs for you and Madie. I read the facebook updates, but haven't ventured to Blogger in a while. Has the improvement from the diet decreased?

blogzilly said...

You never have to apologize for stepping back. Ever. You have every right to, and you have to sometimes. There is almost an inevitablity to it.

Hell, I am in and out of a fog all the time. Sometimes I come close to the brink of just walking away from the Internet completely. But I need it too much. If not for it, I'd have very little interaction at all with humanity. That's just the way my circumstances have played out as far as Life.

But no matter what the circumstances or how long the absence, you know all it takes is a 'Hi, I'm here' and we all welcome you back and want to know how you are. And when you disappear, we give you your space.

I'm glad you are going up there, it's good. I hope there are some good things that are gained from the trip. I think that there should be some kind of help you can get from some service for two should NOT be eating all the costs for this. Austin should be on some kind of disability waiver and he should be plugged into a lot of privately funded disability benefits when it comes to travel. They are out there.

Glad you are back with an update. Hope it goes well. We're always here for you.

Sophie's Story by Elaine said...

It's great to hear from you and ditto on what Ken says. We love you no matter what and we completely understand.

I'm glad you are going up to Detroit. I hope you get some much needed answers.

happy's mommy said...

Ditto Ken. Sometimes your heart (and head) just need a break. I have been there.

And, honey, I am SO happy you have respite finally! YOU NEED IT! And I love that your BBF is with Austin for you...I deeply believe it will only strengthen your relationship as she starts to get a deeper understanding of what your life is. Because until you're in it...there is just no way to fully wrap your heart and mind around it.


Love you, hon...


JSmith5780 said...

Yay to respite and yay to seeing Dr C. I hope he can give you answers this time.

And don't feel bad about the blogging thing. This is my first time in a LONG time going to all the blogs.