So glad I found you guys!

[Elisa]

I bet you guys thought I dropped off the planet. I haven't been online for about five days b/c we're having a bit of family crisis with my dad, he has Alzheimer's and was getting settled in his new place when he started throwing all his furniture around and was threatening people. I've also been busy training a 'replacement' for me (which of course isn't possible, ha) and she is do so amazing that if she quits I'll cry.

Okay, all updates.

MRI says no abnormalities which means his spinal cord is normal, it isn't tethered or short or... which was a HUGE relief. He just has a bad case of scoliosis which is of course we all knew.

He has a first surgery date of March 22nd (my birthday) and a second surgery date of April 19th.

I didn't bring my cell phone with me in my pocket at work b/c mostly I forgot but wasn't worried b/c at least the MRI came back good. Walked in the front door and my husband looked and said something about two surgery dates so of course I called back and confirmed them.

Actually for a tiny moment I thought he was going to say that BC Children's Hospital called for a first appointment and I was ready for a fit of laughter but it wasn't them who called.

I have so much catching up to do and preparing for THE DATE. It's so good to have a date to plan for.

[hdugger]

Good news on the MRI and the dates. So, he'd be here between those two dates, and for some time after the second surgery?

Sorry about the Alzheimers. We went through that with my husband's mom. Very tough thing to watch your parents go through.

[JenniferG]

I've missed some of this thread, but glad to hear you're making progress Elisa.

[Elisa]

It's been a battle Jennifer and I am glad that we've pinned down a date but I also feel so bad for all those who are just starting out.

Shriners came through for me, first class, and I will always be indebted to them somehow and I will support them. They are good. The best feeling ever is to surround yourselves with good people.

[Elisa]

Good news on the MRI and the dates. So, he'd be here between those two dates, and for some time after the second surgery?

Sorry about the Alzheimers. We went through that with my husband's mom. Very tough thing to watch your parents go through.

Yes, he'll be there between surgeries. The first one is to "loosen" up his spine and to put a halo on and the second surgery is to put instrumentation in. His spine is/was 110 degrees, he's collapsing. He should have been dealt with earlier. That said, I'm looking forward to being in Portland again.

[hdugger]

Will they put you up closer to the hospital? Or is the hotel you used last time the same one they use for longer stays?

[Elisa]

Will they put you up closer to the hospital? Or is the hotel you used last time the same one they use for longer stays?

I'm not sure where I'll be but I'll let you know. I quite like the place I was before but it is a bit far away from the hospital but the shuttle was good even though the elderly boys' driving scared me, lol. I'm sure it will work out, it always does.

[jrnyc]

great news, Elisa!

i think 2011 is going to be your son's year for good things!

jess

[mariaf]

Hi Elisa,

I've been wondering how you've been doing (and also if you were able to connect with that other mom about the halo traction).

My dad, who will be 80 in March (I am also a March birthday), has Alzheimers as well. I guess a lot of us are about the same age (I know Sharon and I had this conversation about age), having kids or teens with scoliosis, as well as elderly parents. Not an easy thing to watch.

I'm so glad you have dates now and the plans to help your son can move forward. I know that at the Shriners Hospital in Philadelphia, in addition to nearby hotels and Ronald McDonald Houses, they also have accommodations right in the hospital, on an upper floor, for parents. They are like hotel rooms where one can sleep, shower, etc. They generally aren't used long term, but rather for example when a child is in ICU. Since the parent cannot stay bedside in ICU, they put them upstairs for a night or two.

At the Shriners Hospital in Philly, there is a woman (Susan Schailey) who is in charge of Social Services and handles things like accommodations, transportation, etc. I'm sure there is someone in Portland who is assigned these same tasks and who could hopefully get you accommodations closer to the hospital.

Best of luck and thanks for the update!

[Pooka1]

MRI says no abnormalities which means his spinal cord is normal, it isn't tethered or short or... which was a HUGE relief. He just has a bad case of scoliosis which is of course we all knew.

That is great news!

He has a first surgery date of March 22nd (my birthday) and a second surgery date of April 19th.

I didn't bring my cell phone with me in my pocket at work b/c mostly I forgot but wasn't worried b/c at least the MRI came back good. Walked in the front door and my husband looked and said something about two surgery dates so of course I called back and confirmed them.

Actually for a tiny moment I thought he was going to say that BC Children's Hospital called for a first appointment and I was ready for a fit of laughter but it wasn't them who called.

LOL. Good one.

I have so much catching up to do and preparing for THE DATE. It's so good to have a date to plan for.

They will fix your son and everyone will move on in life. I'm so glad you have the dates.

[Elisa]

Thanks everyone! We've made so much progress in such a short time since joining this forum just in November and here we are: seen by a spine specialist, MRI and now two surgery dates. I really couldn't have done it without the support and knowledge from you all but especially from Pooka, Ed, Gayle and hdhugger for getting me on the Shriner bus. Thank you!!

Maria, I have not called the contacts you passed onto me as I've been dealing with my dad's situation as well as my work situation. That week I was away was a gong show and I had so much to do when I got back just to fix all the screw ups but we're back on track now and I feel MUCH more confident leaving this time and it is for much longer too. I will call and talk to the ladies you suggested, thanks again.

I'm going to call Shriners BC on Monday and let them know that we have a surgery date and give them an idea of how long we'll be down there so hopefully they can give me more of an idea about where I might be staying. When I was at Shriners hospital on the 20th. of Jan. I did speak to a coordinator there and she did tell me about the parents' rooms so maybe I'll stay there?

[Elisa]

I just had the weirdest phone call. I called a Vancouver number that I thought was one of the Shriners fellow who picked us up in Campbell River and brought us back over when we were finished with our Portland trip. We were having coffee on the ferry and he said he really hoped we'd get an appointment soon so I asked for his phone number and told him I'd give him a call when I found out.

Turns out I had the wrong number and the lady who answered the phone said her name was Marina (BC Shriners coordinator) and I realized I'd called her cell number instead of the driver's b/c hers was the next one down on my scribbled list. I told her I meant to call the driver not her but was glad to talk to her anyway b/c I was going to call on Monday. Told her about the whole trip and all and that we'd be back down on March 22nd. and asked her about where I'd stay.

She said each patient has their own private room with bathroom and TV and it has a bed for one parent so I'm going to stay right in my son's room! There are also guest rooms on the 7th. floor that two parents can stay in or two same-sex people can share but I'd much rather stay right there with my son.

Then she told me how to get around Portland using the bus that stops right at the hospital as well as the train (I know that's not the right word) that is free and goes right into town, woohoo!

[hdugger]

That's totally great. I just couldn't imagine you leaving your son every night to go back to a hotel - it's just such an instinct to stay close to them.

[Elisa]

^^ For sure.

I was hoping to be able to stay right there at the hospital but if I did have to stay in a hotel I was really hoping it would be one that was close and not the Portlander Inn where we stayed last time b/c it is quite far away from the hospital but I'd deal with the travel issue but there won't be one after all.

[titaniumed]

Elisa

It seems as though you are being put through a test with all of this. Even though we all go through tests of endurance in our lives, I think that when our parents need help, it’s the hardest. You already have a full plate, and your expected to handle more.

I myself went through that when my dad had ALS. It was a period where I had to be strong, wondering what was going to happen. I knew all along that the odds where grim, accepted it, but was still there helping, trying to balance all my thoughts in between all the phone calls from the nurses, and the many daily events. The Doctors don’t know much about Lou Gehrig’s.... or many of the problems with the brain...

With all of this, you seem to be holding up quite well, and that’s good. You will go through this chapter in your life, and will continue on a much stronger person. So will your son. You learn to accept these things and realize that curve balls will be pitched across the plate, and you have to swing at them. Sometimes, you strike out, but you learn to accept this, and continue on. I’ve been batting for years, and I’ve gotten pretty good at it.

I knew when you posted that 1st x-ray that something had to be done right away. I think it should be law that all Chiros should have to refer all patients with large curves. There should be some sort of age/curve parameters set on this. I wouldn’t worry about the past too much, just keep looking forward, things are going to be fine. We are following.

If you can possibly get the chance to get away down there, I would recommend a trip to Mt St Helens, there are several really neat museums along the road.... Mt Hood would be great also, the Timberline lodge is up there. Don’t go if there is a storm rolling through, I wouldn’t want you guys to get snowed in and miss surgery. he he. maybe Timberline isn’t a great idea, Jack Nicholson might still be up there.
Ed