Australia - Elysia and her 4 month check up

[Aussiemum]

Hi all,

Not posting much these days but still around by PM or the blog to answer any questions. Always happy to lend a hand or ear to anyone who's child is about to undergo surgery, especially those from down under.

Elysia had her 4 month check up today and it's all good news. Nothing to worry about and everything looks fine. She's still only risser 0 - which means we will still have a quite a while to continue x-rays and check ups - every six months until she's completed growing.

She had an episode of extreme pain from Sat to Tuesday - it appears that she just overdid something as by Wednesday she was back to normal again.

Surgeon also advised that he can see on the x-ray and also feel that her ribs are growing back nicely - that fact is amazing in itself!

I hope everyone is doing well in their Scoli Journeys - you were all such life savers to me during the pre-op the world is coming to and end days!!!!

Cyber hugs to all!
Del :p
xx

[RugbyLaura]

Hi Del,

Thanks for the update, soooo glad to hear that all is well with Elysia.

LOVED your blog!

Hugs,

Laura x

[Susie*Bee]

It was great to hear from you!!! :D I'm so glad all is well and going super for you. Yes, that's amazing about the rib regrowth, but that's what they say will happen...

I'm sure you are the busy mum, dealing with daughters and dogs and all the rest of those things that had us in stitches at times. ;) Big cyber hugs back to you, too. :) Susie

[Pooka1]

That's great Del.

This surgery is remarkable.

Savannah gets occasional pain along her ribs a few times a week although she didn't have any ribs removed. Very strange.

Best regards,
sharon

[txmarinemom]

Sharon,

I still have occasional rib discomfort, and I also had no ribs removed ... from what I've heard others say, it comes with the territory.

The sensation that bothers me most is a periodic feeling of my ribs rubbing together in front (for lack of a better description) on the side that used to protrude. That's mainly in the morning right after I get out of bed (then again, ~everything~ is achy in the mornings - down to my ankles ... LOL).

What I feel on the back side (and not that often any more) is probably muscular ... it's on what was the very short side (the left) and most likely due to the rotation correction.

Tell Savannah it gets better with time :).

Regards,
Pam

[Kitty]

Hi Del,

I was interested to read about your daughter's surgery and would like to know more. I am in Perth and we don't have any support groups here and although Tahlia's surgery is still a few months away, i am starting to get pretty nervous about it. We have another appt in October before the Nov surgery date, and i never seem to feel as though i have received enough information. My daughter's surgeon isn't easy to talk with and rather abrupt (although I hear he's very good).

How did you cope with Elysia's upcoming surgery and how has she coped herself. Was it a long recovery period?? How old is Elysia??

HOpe to hear back from you.

Thanks,

Lisa and Tahlia

[Susie*Bee]

Kitty-- I've been reading your posts this week and want to welcome you to the forum too. I think you'll find plenty of support here. Some of us never do find any other support-- in the way of groups or individuals who have traveled this road... so the forum is such a blessing.

I'm not sure how often Del checks on things on the forum, but if you haven't read her blog, please do so. It will give you a very good look at her daughter's surgery and progress, in a very entertaining way. Just go to her initial post in this thread and click on her blog-- down in her signature.

Best wishes with you and your daughter. I know this is such a difficult time! But you WILL get through it-- everyone seems to agree that the waiting and the surgery are the hardest times-- once you get to the recovery, things are back on a do-able track. :) Susie

PS-- if you want me to add your daughter's surgery to our "UNofficial surgery calendar" let me know. You can see it-- and read how to add it to the official one as well, at this thread: http://www.scoliosis.org/forum/showthread.php?t=7443 We added November in, but you can't change the title of a thread so it doesn't show that.

[Kitty]

Hi SusieBee!

Thank so much for the reply. Everyone who has responded so far has been so friendly and helpful. This site really is a godsend!! Yes, you are right, i am sure we will both get through this, but it really helps being able to talk with people who know what you're going through.

I will definitely access Del's blog and check out the calendar you mentioned.

Thanks heaps :)

L & T

[Aussiemum]

Hey Kitty,

Hope the blog site helped you! I think you got a bit confused in the other post, Elysia has already had her surgery back in Feb this year here in Sydney.

I have a friend who's daughter had surgery in Perth last September. Email me and I will pass on their details to you.

Feel free to email and ask any questions you like or on the forum here. I think it's more stressful as a mum going through this surgery than actually having it yourself! It's so hard to make a decision on someone else's life and body, let alone your own child. There's HEAPS of wonderful people on this forum that can give you words of advice and help, but if you want an Aussie shoulder to cry on I'm happy to be there for you. (Don't worry, there will be plenty of smiles on everyone's faces once the surgery is over!)

Susie Bee - I have my email linked to any threads that I post on so that it comes straight through to me without having to come online and check. I'm still lurking around looking at for any Aussies who may need a hand. Thanks for stearing Kitty in my direction.

By the way Kitty, my older daughter is Tarlia as well.

Hugs to everyone!!! Hope everyone is doing well.

Del
xx

[Susie*Bee]

Ahhhhhhhh... it's good to know that you are linked that way. I had forgotten there was that capability. How is Elysia doing now? Is she pretty much recoverd and doing what she wants? Anymore funny stories about pets? Did dog #2 settle in ok and all? Hope you are all doing well. Hugs, Susie

[Aussiemum]

Oh - Elysia is doing great!!!!! Surgery???? What surgery???? LOL!
She has a little niggle of pain every now and then, but hey, don't we all! Nothing that causes her too much stress!

How's the dog doing, well as I type this, Sunday morning, Elysia is in the bath tub WITH THE DOG!!!!! That's how she baths it. (and then showers herself afterwards - thank God!!!) And how does she dry it??? Well the dam thing right now is running up and down the hall rubbing itself into the carpet. Who should I kill first???? Hmmmmm child or dog????

Okay - must run and get myself on the 6 oclock news, either for child abuse or cruelty to animals - LOL!!!!!

Del
xx

[Kitty]

Hi Del,

I had a look at your blog which was great and has given me some ideas!!! ;) It was VERY VERY helpful. I am amazed at the difference in her curve from pre-op to post-op. Tahlia has a somewhat larger curve that Elysia (I think it's 68 degrees) so i hope her correction will be a fairly large one, although they have told me if won't be perfectly straight, but i think we can both live with that.

You mentioned you knew someone in Perth. Do they come online? How old was their daughter when she had surgery and do you know what hospital/doctor they had??? I would love to contact them.

Thanks very much,

Lisa

[Aussiemum]

Hi Kitty,

Glad you found the blog helpful! That was our intention and am so glad that we are able to help other Australian families (and others) with it.

Can you email me on delphine.misst@bigpond.com and I can send you Ivan's details. His daughter was 12 at the time and had a curve probably around the same size as Tahlia's, I can't remember the name of his Doctor or Hospital but know he would be more than happy to help you out in any way that he can.

Cheers
Del

[Snoopy]

Del,

It's nice to hear that your life is back to normal!

Mary Lou

[Kitty]

Hi Del,

I'm a little cautious about making contact with people i've met on the internet. Can you tell me how well you know this person and have you met him yourself? At this stage, i think I'd prefer to communicate via the web.

But i thank you for your offer. I would like to be able to ask you questions if i can? I know i will have many more as time goes on and the date gets closer. I think it's lovely that you want to help people because it really is a nerve-racking and confusing time when you don't know what to expect??

Thanks and Hugs

Lisa

[Kitty]

Hi Susie Bee

Can you please add Tahlia's surgery to your calendar??? It is on November 18th. I wasn't sure how to add myself.

Thanks,
Lisa

[Aussiemum]

Hi Lisa,

Okay! Yes the web is a scary place and there is a lot of nutters out there. At first I was very apprehensive about broadcasting our blog but thought if everyone thinks like that then there would be no help for anyone!

If your apprehensive about giving out your email address, you can always create a yahoo account that is totally discreet. But anyway, if you want to communciate with me on the forum that's fine. NSF does have PM, (private messaging) problem with that is it's only 1000 characters, (CAN YOU HEAR THAT JOE - PLEASE SEE IF YOU CAN FIX THIS PROBLEM!)

Ivan I have never met! I would never give out someone else's details over a public forum, hence why I asked you to email me and I would give them to you. I met him and another lady in QLD through the forum and we all became great friends through a very stressful time. He was the one who communicated as his wife is not computer savy! His daughter's surgery was in the September (at RPH), so he was the experienced one who gave myself and Mel (QLD) support and information on what to expect. But..... it doesn't always work out that way because what I've learnt is that Scoliosis is a very personnel thing and not only concering the patient but the surgeon as well. No two surgeries will ever be identical.

Ivan doesn't come onto the forums anymore. I don't either as I know there is so many wonderful people on here, some of who have become wonderful friends to me, who can offer so much help. Since the majority of users are in the States, a lot of the help is in relation to Doctors and Hospitals there. I just come on every now and then, to post the blog and say Hi to my Yankie mates and put out the blog for any lurking Aussies looking for help.

We don't have much assistance here as you have found out. We have the Scoliosis Association of Australia and each state has a Secretary. The NSW secretary unfortunately doesn't seem to be active. The Perth Secretary may be better. I guess for a lot of people the surgery is over and they want to move on. Ever see the movie "pay it forward" - that's what I (and many on this forum) are trying to do - pay forward all the wonderful help we received during one of the most stressful periods of our lives.

Anyway, ask away your questions - only too happy to help out.

Sorry for ME being the one confused before. I got confused with your posts for Ausmummy - me being Aussiemum!

Cheers
Del
xx

[Aussiemum]

Thanks Mary-Lou!!!! As normal as can be raising 2 crazy teenagers!!!! LOL!!!!

[Susie*Bee]

Kitty/Lisa-- I am adding Tahlia now. If you go to that thread, you can read how to add her to the official surgery calendar too-- or I can do it for you if you want. If you want more info listed (levels to be fused, doctor, hospital, etc.) just let me know. If you send me a PM, I will get the info quicker because I'll get an email notification. Or add it as a post on that calendar thread and I'll see it there and add it to the first post... :) Susie

[Aussiemum]

Hey Lisa,

Because you were so apprehensive about who you meet on the forum I emailed Ivan and asked him to come on line. He's put a post for you on your need help thread! He's very sweet and couldn't do enough in the way of advice and help for both me and Mel when our daughters were going through surgery. It was good to be able to get some perspective on things from others down under. Like I said before we're "paying it forward".

But... you can still ask me any questions you like on the forum here!

Cheers
Del

[AusMummy]

It was great to hear your daughter had a great 4 month check up. Only 1 week until lauren's surgery. Thanks for your web story on Elysia's journey. It is a bit confronting but also very comforting. 2 weeks time and lauren will be over her 2nd surgery. Can't wait!

[Aussiemum]

Everything will be OK - rest assured that your in great hands with Dr Cree.
And if Lauren is going through Westmead Private - they were absolutely wonderful there as well.
The most stressful part of the whole thing is the BEFORE surgery - afterwards it's such relief when it's all over. The kids just seem to bounce back so quickly - it's nothing short of a miracle.
You must be feeling very stressed out right now, I know I was weeks and even months before hand - but as the time drew near we were kind of looking forward to it - just to have it all behind us. For us we just kind of made the whole experience as interesting and fun as possible for Elysia - (as much as one can on something like this) hence the Blog page, - she's written a book on the experience (not finished yet) - she did scrap booking of her hospital stay, you name it she did it. It was something else to focus on.
If you have any other questions - please feel free to ask me! I had MILLIONS for everyone before Elysia's surgery and the Doctors just don't seem to give you enough time at the appointments.

Cheers
Del
xx