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momofalotofrugrats
3rd August 2005, 08:27 PM
Hi everyone,

Lauren had her 1st surgery to remove the tumor on her spine on the 28th of July and she was in the hospital for until Monday afternoon. The Surgery went very well they tell us and she seems to be doing well but still in quite a bit of pain. She has finally started walking a little bit again but looks like Bambi at the beginning of the movie we are hoping that's just from not using them for so long. I think the worst part of the whole thing was the trip home as we tried to get her prescription filled for pain meds before we left the hospital and found out they don't accept Tricare and there was no Super Wal-mart anywhere around so she was only on Tylenol on the way home she didn't complain a lot as she tried to sleep but kept waking up saying her back hurts.

They believe the got the whole thing and it must of recess some since the MRI and CT Scan as it no longer seemed to be in the Spine Canal they said which I guess surprised them after about 10 different doctors all saw the same thing on the films. So one surgery down now we are waiting about a month before they due the next surgery for the growing device we are still hoping it's the Veptr verses Growing rods it just seems to be a better thing to be able to follow her NF1 they are still waiting to see if the FDA has approved her for use of this device if not it'll be the growing rods.Soon as we have a date for the next surgery I will let you'll know please continue to keep Lauren in your prays. I truly believe god is answering some of them just by the tumor recessing away from the dangerous area of the spinal cord and canal. Hope this finds everyone well. Now I can start planning for her 3rd b-day party and let her have some real fun before the next step. Thanks again for all the prays. Cathy

titch
3rd August 2005, 10:28 PM
Oh thank goodness! That's truly great news that it had receded :-) I'll keep my fingers crossed for the ok to be given for the Veptr, but either way it sounds like she's an absolute trooper and will make the best of it :D

BeckyH
3rd August 2005, 10:32 PM
that's great news! i feel you on the pain issue: after my fusion 18 days ago i was finally discharged and it took ages before i could leave, all the forms to fill in. then what should have been a journey of not even two hours turned into 3 hours because of a major accident on the motorway. i was on NO pain meds (6 days post op) because i hadn't kept any paracetamol down the night before so it was just trying to doze all the way home.

hope she continues to improve

sins
4th August 2005, 01:18 AM
It's wonderful to see the surgery being so successful.It's definitely a long way from where you were two months ago.Hopefully, her recovery will be uneventful.Don't worry too much if she gets growing rods, it's still a far, far better option than a fusion.She seems like such a brave and strong child.I really hope though that she's a candidate for the Veptr.
Enjoy planning the birthday party.
Sins

momofalotofrugrats
4th August 2005, 03:58 AM
Thanks so much for all the support guys hopefully once my mind comes back some and I'm not so overwelhemed I will be able to help others. I'm really hoping the Veptr approve comes in time for the next surgery. Dr Betz seemed to think they would approve her but he doesn't want to wait to long for the approval and if it's not in when we get ready to do the surgery she'll get the growing rods.

Your right sins from everything I've seen and read anything is better then fusion Thanks again everyone

Cathy ( Lauren's mom)

jfkimberly
4th August 2005, 05:27 AM
From my own experience, anything is better than fusion (anything that doesn't let the scoliosis progress unchecked, that is!). I'm glad they're only looking at options that won't permanently fuse any part of her spine.

Sounds like this surgery was a success, and it sounds like it went relatively smoothly. Is she settling in at home well? How are you doing?

andrea
4th August 2005, 07:41 AM
That's great news Cathy, I'm so glad the surgery went well for you and Lauren. I can't imagine what you went through when Lauren was in surgery - it really is tough on the parents. Hope you're managing to cope ok and getting some rest too. I can't imagine it's easy with 4 children.

As you say, anything is better than fusion, and I have come across a few people at hospital who have the growing rods and they have nothing but praise for them. They say the difference is amazing and they have no regrets about their decision to have them, which can only be good.

I'll keep my fingers crossed that she gets the outcome that is right for her. Keep in touch.

Take care
Andrea

momofalotofrugrats
7th August 2005, 02:36 AM
Originally posted by jfkimberly@Aug 4 2005, 04:27 AM
Is she settling in at home well? How are you doing?
Hi all

Lauren is doing really good she is back up walking around if she pushes herself to much she'll start having some pain but nothing like what she was having on the drive home. and she no longer looks so much like Bambi learning to walk. I'm doing better then I thought I would I'm relieved the 1st step is over and that tumor is out. Thanks for asking Cathy

jfkimberly
7th August 2005, 03:10 AM
Kids are amazing, aren't they? *smile*

I'm glad she appears to be recovering smoothly, and that you're feeling some relief. You deserve a break from worry and stress. You've done well for yourself and your daughter and now it's time to relax for a bit.

andrea
7th August 2005, 02:04 PM
I'm really glad to hear she's doing so well Cathy, and that you're feeling more relaxed. It always amazes me what children put up with without compaining too much. I'm not sure we'd be such good patients if we had to go through it all.

Joy
8th August 2005, 09:40 PM
Cathy - I can't remeber if I directed you to this site ( www.nf.org ) before but I found it quite helpful after I was diagnosed with NF1. Thankfully the only tumour I've had so far was on my hand. I'm glad that Laurens surgery went well and that you're both holding up well. I will keep my fingers crossed that her approval comes in soon. Let us know how everything goes!