Monday, June 27, 2011

I hate thinking up titles...

I seriously thought I was going to get on a better roll with the updates, but nothing major has been happening! Austin's condition has remained fairly consistent with few changes. Seizures aren't terribly high...or low. Head wound appears to be 100% healed, although I still keep it covered with gauze to keep him from scratching again. Health-wise that's about it.

Therapy seems to be at a bit of a stall. He really needs physical therapy again, but the PT at our center is leaving and that leaves us in limbo for the moment until they can get a replacement. In the meantime, we're targeting gross motor in OT. I know, I know, OT is for fine motor, but his tone is terribly low and gross motor is a major issue right now. I'm extremely hesitant to get him back in the previous PT program at our local hospital's outpatient center. We were going 2x a week, an hour commute round trip, and $100/week not to mention the ridiculous gas prices. They did absolutely nothing with him. His OT now is working him much more than the other PT ever did. So, I think I'd rather just wait until we can get him in where we're already going anyway.

As for Detroit, flight is booked and hotel is reserved. Naturally, I waited around until airfare went up, but I'm just relieved fares weren't quite as pricey as the last time we went. So, all is ready and a new travel bed is even on the way. Speaking of beds, I finally broke down and moved him back into his room! Wow, I almost forgot how I used to be able to access my closet without moving a bed or sucking my tummy in to squeeze by it! We also bought him a new bed frame to get the mattress off the floor on Friday. We were so excited to get home and put together his new big boy bed. As luck would have it, we started taking it out of the box and both end pieces were damaged. Nice. Of course that was the last one in stock, so it looks like it will be another 2-3 weeks before the new one comes in. At least now they're going to throw in free delivery and assembly. ;)

And respite. Respite, respite, RESPITE!!!! What else can I say??? It's been amazing! Austin is in terrific hands, he loves his aunt e, and mommy is refreshed and semi-sane again!

Back in his own room with his fishy wishies (aka his fish lamp -lol)

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...