So glad I found you guys!

[hdugger]

Elisa, I'm in the Portland area. I'm not on the forum every day, so feel free to send me a message when you know your date if you want to connect with someone in the area. (Also perfectly OK if you don't - I was always so frazzled with I traveled alone with my son that I just wanted to collapse most of the time). I'd be happy just to point you to good places to stay/visit in the area.

My husband and I were talking today about how we could have missed all that curving my son was doing during his adolescent growth spurt. I don't think I would have seen it until much later (it was 35 degrees when diagnosed) except that he also had kyphosis and his head was just *way* far forward. Even now, when he's in the high 50s, I can't see the side to side curve at all, even if he takes his shirt off and I try to look for it. His neck is a little tilted to the side, but that's it.

[Elisa]

^^ Okay, thanks for the offer. As soon as I get an actual date I will post it as well as send you a message. I have only been to Portland once and we spent the night there on our way down to California and across to Mexico. I recall Portland being a lovely city with lots of bridges. I'll keep in touch, thanks for the offer.

Edit: I asked this question in another thread but will ask it here as well... I noticed there is a Shriners hospital in Spokane Washington who deal with scoliosis so I was wondering why we are making plans to go to the one in Oregon? Not that it matters at all but I was just curious.

[hdugger]

That's a good question (to which I don't really know the answer). We never went to the local Shriners (because we were under the impression that my son was all done curving at age 16.)

I do know that the only other local family on the board went to the Shriners in Philadelphia, but that may have been because they have an excellent juvenile treatment name (your son is a teenager, isn't he?)

[Elisa]

Yes, my son is 14 and will be 15 at the beginning of June. I don't know why either that Spokane wasn't even mentioned but I'm sure there's a good reason.

It's back to the waiting game. The woman at Shriners in Burnaby (close to Vancouver) did say that nothing much goes on in December b/c of the holidays but it sure would be nice if someone called me in the next little while to give me some sort of idea when our appointment will be. I have been carrying my cell phone around in my back pocket at work even though we're not supposed to, just in case I get 'the call' but nothing yet. Our passports won't be here until January 15th. so we're not going anywhere until then but I still wish they'd call.

[Pooka1]

Our passports won't be here until January 15th. so we're not going anywhere until then but I still wish they'd call.

You might want to mention that to them in case they make all kinds of plans with the surgeons to see you earlier.

[Elisa]

When I talked to the Shriners' lady last week she told me they used to book appointments for people but have recently changed it to where they call first and ask when a good time is for us and then they arrange it from there. I guess the scheduling works better that way. I could send her off another email though telling her about the passport issue but I got the feeling when I last spoke to her that she's handed all my paperwork/emails/letter/x-rays over to Shriners. I can't wait to get a date! Haha, that sounded funny b/c I am married, lol.

[Elisa]

Got my husband to call BC Children's hospital yesterday to update them on new cell phone numbers as we're finished with our current plan and bought new Koodo phones. Husband asked how our file was doing and the secretary said: "Your son is right at the top of the list" which is the most information we've gotten out of them in about nine months. I'm assuming him being at the top of the list means he's on some sort of cancellation list OR as husband said: "someone dies while waiting so long so he gets their appointment" hahahaha!

[leahdragonfly]

Hi Elisa,

Sorry you are still waiting to hear something. Have you considered politely calling the appointment desk at Shriner's Portland to see if you can schedule it yet? It can't hurt--you know, the squeaky wheel and all. I'm like you, I want to know the date, especially since you are traveling a long distance.

I had actually never heard of Shriners in Spokane until you mentioned it, so I was reading about it online briefly yesterday. There was an article saying that the Spokane hospital was being considered for closure (although I think that didn't happen). It may be that Portland has a much more active spine program. I saw that Spokane only had one spine surgeon, whereas they have several in Portland.

[Elisa]

I think I might just give them a call Gayle. I've thought about that but I'm trying to be patient b/c of the December/holiday thing, that and I have been in contact with Shriners' office in Burnaby. Also b/c I know our passports won't be here until the middle of January so it's not like we can go until then anyway. I think I will call though when I get home from work. I don't have time to look it up right now but do you know if Shriners' appointment department is listed on their webpage? I'll have more time to look it up when I get home as I do have to get back to work but it should be relatively short day.

[Elisa]

Gayle, you rock! I did call Shriners in Portland, got transferred to the person who manages appointments, left a message and she just called me back now. They have my son's application and although not officially approved, she is assuring me that he WILL be seen ASAP some time in January as he is of the right age/curve etc. She was really really nice and promised me she'd call back with a date as soon as she has one. Whew.

[leahdragonfly]

That's wonderful news, Elisa! I just can't imagine having to wait over 9 months and counting with such a vague hope of being seen in Canada.

I think you will find that most everyone at Shriners is friendly and incredibly willing to help the kids, something that sometimes gets forgotten these days in healthcare.

Please keep us posted as you hear more.

Gayle

[Elisa]

I will definitely keep you posted Gayle. Heck if I get an actual appointment I'll be damn excited I'll have the cap lock on! It is Friday night and no call this week and I doubt the hospital calls on the weekend... do they? My boss has no problem with me carrying my cell phone around in my pocket b/c she knows I'm waiting for a very important call and besides, she loves me, lol.

[Elisa]

WE HAVE A DATE!!!

Just received a call from Shriners in Portland and have been given the date of January 20th. 2011 at 8:15 am. Woohoo, my son will FINALLY get looked at by a spine specialist after almost one year of waiting and watching his back get wonkier each day it seems.

I really want to thank Pooka, Ed, Gayle and the others who suggested getting in touch with Shriners as well as everyone who participated in my thread as I truly appreciate all your input and your caring and encouraging words.

[leahdragonfly]

Elisa,

I am thrilled to hear you have a date, and it won't be too long now! Great news. Do you know which orthopedist you are seeing?

Is Shriners helping you to arrange lodging? I am pretty sure there is a Ronald McDonald House near the hospital. There are also numerous local hotels that offer discounts to Shriners or OHSU patients.

You may want to plan on bringing a few snacks and some light reading material or other activities. Hopefully the clinic won't be too busy, but there is usually some waiting involved especially during the first appointment.

Take care,

Gayle

[Elisa]

I have no idea who we're seeing Gayle. But it is SOMEONE WHO KNOWS SPINES! Sorry for all the caps but I'm just a bit excited b/c we have been waiting for so long which is pretty sad actually but I'm not going to focus on that. They'll send me all the details in a letter so I'll know more then and of course I'll let you all know. Called the wonderful Shriner gentleman today who came and had tea with me when I was at my worst and he listened and helped. He's so pleased to hear things are moving along. I absolutely have to keep him up to date on things for sure.