*sigh* it's been a looooong Day!!

Last night we had an incident where Harley was mistreated by a therapist...Took 3 hours to calm him down after she left.
Here;s a couple of pictures...I think you can see them?

This morning started bright and early with pain waking me at 4:30am...Dr has suggested that I now take 2 percocets every 4 hours (vs. one every 4 to 6 hours) after calling him to tell him I needed something a little stronger.

Then the continuing saga of reporting and contact with aforementioned therapist...Robert to the bus....Harley off to the bus...Tyler off to Tricia for school...Zachary's birthday!!

Nine o'clock we had Robert's IEP meeting...he's qualified for special ed services after graduation for job training and placement!! WHAAAHOOO!! He's gonna need it.

Got a letter from my doctor telling me I had to reschedule the mediation...currently scheduled for early January...Now he wants me to reschedule for late Feb or early March! That seems so far away but he feels I won't be able to deal with the stress and fully and correctly heal if I don't put it off that long *sigh* now I just gotta wait for my ex and his attorney to go through the roof and possibly file contempt charges on me?! And of course I have to get notice to the judge as well!?

Back home...trying to respond back to the mediator and the computer just won't cooperate. Made a deal with Andrew I would go and get a laptop today instead of waiting til after Christmas sales. I have TOO many important things going on to have the computer constantly freezing up on me.

Oh yeah...Santa Swap (if you don't know about it, ask me what it is about!)...is being advertised on the radio every hour this weekend...Lindsay is out of town til tomorrow afternoon...That leaves me and possibly "anonymous" to moderate the slam dunk of members and postings we are anticipating...but this is something I am enjoying immensely!!

Tricia gets Tyler home from school and she and I plan to go to Walmart because she had heard of a laptop deal for $299...Just as we are about to walk out the door, Harley's school calls and says to come and get him....he is becoming physically violent and they couldn't calm him down...he was still having 'issues' with the incident from last night...Andrew rushes off to get him. He gets home and we discover the 'incident' from last night left bruises on him! I'm hotter than a hornet!!

Finally Tricia and I get to walmart and the lady claims they can't sell it for that price til tomorrow...not good enough...I can't head out into crowds tomorrow, it was hard enough trying to do it today after going to the IEP meeting...She rang it up and amazingly enough it scanned at the special price!! Whoot!! Laptop purchased and homeward bound.

Get a call from Kelly's school...she's failing Japanese and needs extra help. Not very thrilled with the boyfriend nowadays since he's being a butthead, but you can't tell a 16 year old anything bad about her first "love"...even though everyone including her friends at school are telling her how much he's been treating her like dirt and she deserves better. So who's gonna try to cop a tude with me? At least when I told her I didn't need the attitude from her today she knocked it off...

Oh yeah, Tyler went to the museum with school today...he was so excited he got to see REAL (and BIG) dinosaur bones up close...he wished he could've crawled on them like curious george and turned them into a puzzle...darn it! LOL

We had planned to have cake with Zachary for his real birthday today, but he turned 2 today and seems to know it!! He had a bad case of the terrible twos!! He wanted nothing to do with parties or cake today...Good thing his party is scheduled for Sunday!!

Needless to say I've been a ball of nerves all day...I am ready to take my ambien and resume my sleeping spot (on the couch because I feel like I'm drowning if I sleep in bed...even with the wedge pillows LeeAnna gave me :( ). I miss sleeping next to my husband, but breathing is more important...or is it?

I know there's more that's gone on today and I probably have updates for some of what I wrote above...but I'm too ready to go down for the night so it'll just have to wait til I have some time. It seems I will most likely spend most of the weekend on the computer...on my perch on the couch recuperating from today...

Sleep well everyone...Ambien will relieve me til the pain wakes me up at 4 or so...*(sigh)*

Team Tracy

I finally got my Team Tracy blog up. (You can click << there or it's in my sidebar under other Blogs). I am going to ask Kelly to keep it updated as recovery progresses.

Thanks to everyone who voted. There are a couple of videos there I ran across on YouTube and the initial workup and diagnosis process.

I am hoping that other patients can read it...I have yet to find any information on the internet about this type of tumor from a patient's perspective so I am hoping it will be an educational tool for those who search the internet for this type of information.

Sorry again...no throwback pic today...

Maybe if I can't sleep later...I had my pre op appointments today...I posted updates on that on my other blog (ask me if you need a link to it).

I am super busy trying to get arrangements made for when I'm not home and when I'm recovering. I'm sure you all understand.

I won't even try to promise to post a Flashback Friday pic as we have appointments tomorrow...6;20 Robert to bus; 6:45 Harley to bus; 7:10 Tyler to bus; 10:00 we have our interview and scheduling with our 19 yr old babysitter; 1:00 we have our appointment with the life insurance guy (for Andrew of course, I am not insurable right now :( ); 2:30 Harley's home on the bus; 3:00 Harley physical; 5:45 shadow training with one of our new respite providers...

Those who haven't been on facebook, did you know I got a haircut last Friday? I'll try to get a pic posted...although I don't like the "after" pic as Kelly was far too close with the camera!

Surgery--sitters, meals, recovery!

Wow, looks like I'm gonna get a little bit of time to do some updates on my blog! I can't relax until Andrew gets home from work safely which I am guessing will be about another 2.5 to 3 hours! (about 1AM)...

Once again, I sit here to blog and don't even know where to begin...Today's snow day was great...you see how many things we got up on the blog? Not having to go anywhere, no phone calls to make -- almost an actual "vacation" day for me...

So I ended up going back to the post I made on the 17th (almost two weeks ago?!) where I said..BBL and listed some things to talk about...At least some of the items I have more information on so this won't be quite as stressful of a post as it would've been had I wrote it two weeks ago...

I think I've already touched on some of the issues, but there are even updates to those:

Harley's behavior plan--update is that we had another meeting..He has an official behavior plan in place now and a health plan that includes his psychosis and seizures. I am so happy that I had Patricia in our corner to help us through it. I have to admit that I dropped the ball...feeling so overwhelmed about everything else that has been going on. I'm sure most of you know how hard it is to admit that you are overwhelmed, but at this point I don't think I can hide that fact.

I think i've already blogged about my surgery date...November 20th...I have a bunch of pre-op appointments on Thursday! It's getting closer and closer! In this whole process I've had so many logistics to work out. Andrew managed to get 5 days off work starting the day of my surgery. Marion (the lady we gave a car to in March?) is coming over to help him out so he doesn't get too awfully stressed out. My teens will be home (and not in Wyoming after all) and that will give Andrew some help as well.

I managed to get my resourceful mind working and asked for, got approved additional respite for Harley. He will get 4 hours a DAY from the 20th to the 25th--so that should reduce some of the stress on the family as a whole. I hated to do it, but the more I can keep him on routine the better off everyone will be. It will be hard enough on him to not have me around...who knows his schedule and routine better than even himself! I was also able to get him approved for 8 hours a week for 4 weeks after surgery. I am trying to arrange those so that it is on Saturday and sunday at Zachary's naptime so I can get some quality rest. We have our first interview on Friday afternoon. It was this request that made me ask for a 'letter of necessity" from my neurosurgeon...when I received it I completely freaked out because I was not aware of the restrictions they would be placing me under...of course I knew about the no driving...but...Here, I'll let you read it for yourself...
Tracy has received treatment from this office on 10/9/09. Tracy is scheduled for surgery on 11/20/09 and will need additional assistance in caring for her 12 year old son. Tracy will not be able to drive for at least two weeks after surgery while in a cervical collar. Tracy will need to have several follow-up visits scheduled after surgery. The first one is 10-14 days after surgery for a nurse visit to assess incision. Following is 4-6 weeks after surgery for a post-op visit. And then 3 months after surgery for a final follow-up.

Tracy will have the following restrictions after surgery: no bending, lifting more than 10 pounds, or twisting. No lifting anything above the level of her shoulders. No driving for two weeks, while using narcotics or muscles relaxers or wearing a cervical collar.

Now, I was NOT aware of the need to wear the cervical collar, the lifting restriction nor the bending or twisting. This even knocks me out of diaper duty for a little while.

Since I cannot drive, it is creating a unique situation...after all I do so much driving on a daily basis and trying to cover those areas won't be easy...that I am still working on. I have asked the owner of his behavior therapy group for special consideration to have them pick Harley up at home for therapies. Typically they pick him up from school but their policy is that if the child is not attending school for that day, you must provide transporation to the center. I am still awaiting a response from her. Then I have to figure a way for him to get home. He will start going til 5pm instead of 4pm (oh yeah, we got approved to increase his behavior therapy hours from 2 to 3 a day for 3 days a week)....and Andrew has a client at 6...in bad weather he will be late to his client. Legally Kelly can't drive for us, even if I am in the van because the rule of an underage provisionary licensed driver is that they can have only one passenger under the age of 16 in the car (including siblings). So if the owner does not approve transportation for both ways...I still have quite a bit of footwork to do...I actually have two options -- but can't say I am comfortable with either of them...(1) Find a respite worker who can do transportation, but then we are wasting 3 hours of the day while the worker is waiting for Harley to finish with therapy. (2) There is a special medicaid transportation service that-because of my medical restriction on driving - will provide service...somewhat like a taxi or cab service. It would be door to door--but we are talking a time of year when the weather could be bad and that I don't know either of these people?!

One of the moms from Tyler's school is willing to drive Tyler to/from the bus stop each day while I am on restriction. She doesn't live far from us...she also has five children (ages 10-4).

Babysitters, meals, general household help and other assistance...
Friends I've met through freecycle are bringing over meals while I am gone and a church has 'adopted' us for a time (not sure how long) after surgery where the women's guild will make meals and have them delivered to our house. Marion contacted some of her friends and we will have coverage here at home 24/7 while I am not home--and when I am home in recovery if that's what I choose to do. I am also hiring a 19 year old boy to help with the boys (babysit) during the day who is a friend's son. She does foster care and he comes highly recommended by another friend. He is charging us only $6 an hour but we haven't decided for sure what hours we are going to ask for him to come over...I'm still trying to nail down an "at home schedule" But we figured even if we have him here for about 50 weeks the kids' first week back at school it would cost us less than $300 for the week. That's really not bad at all! The church who is getting their ladies' guild bring meals has offered to help with part of the cost. I had also applied for some emergency funds from Harley's caseworker (but was denied, thanks budget cuts!) just in case I ended up having to hire an official 'nanny' which would be double that cost I am sure...This is all help I am assuming I will need and am preparing for when I return but am still on restriction--I definitely don't want to take chances on overdoing it and ending up hemmoraging in my brain!

Oh and we've been "adopted" by that same church and Tyler's school to help out with the Christmas gifts so that means I only need to really shop for my two older children...and that is something I can do online or send Andrew out :))

Whew, that was a lot more to say about that than I realied! I may write more tonight, but I'm gonna take a break for now.

Stressors and Surgery Scheduling

Going back to my post from Saturday (finally right?)

Surgery has been scheduled. I'm not happy with the scheduling...I have to be at the hospital for check in at 11:00 on 11/20. I will be in the hospital for 3-5 days-Two of those in ICU.

Then I will need help at home for another week after that. The surgeon has warned me that the most prevelant side effect from surgery I will notice is fatigue and exhaustion--which will last about 4-6 WEEKS!

I will not be able to drive for 2-4 weeks after surgery either. Not sure how that's gonna work yet.

Needless to say, I have been super busy trying to get volunteers lined up to help with driving and around the house (for the first week I am home).

I'm worrying myself sick because I've never been away from my little ones overnight...or even more than 3-4 hours at a time...I'm not sure how they are going to deal with it or even if anyone else is going to be able to console them.

Harley is accustommed to me helping him with his daily routine. Andrew has a hard time keeping to Harley's routine...he's really not sure on what his routine is and when things start running behind and Andrew gets stressed he tends to yell...which leads to Harley having either a severe behavior meltdown emotionally thinking everyone hates him or he becomes physically violent...which then leads Andrew into a bigger tissy fit and it's a never ending cycle unless I get involved and defuse it. I'm not sure what I am going to come back to here...It's so damned stressful.