worried mum from Australia

[dapsbounce8]

I really didn't like the whole shower issue either. I had my mom wash my hair for about the first week at home (second week after surgery), but only if I wore a bathing suit while she did it. I also had difficulty doing my hair, so I got into putting it into a side bun...it was very easy to do, though not very stylish .

Cami bras are a good idea for now. I tried wearing an underwire several times, but the pressure on my ribs caused me great pain. I was never very worried about the scar ripping open though.

Good luck, I hope I've helped.

[mumof5]

Amber's hair was just below her hips. When we were approaching the second of the dates that we were given I spent almost 8 hours plaiting it for her so that it would be easier to look after. She left these in in for 7 weeks. Between that date being cancelled and getting the final date she decided to have it all cut off and it is now above her shoulders. Although she can brush it she can't wash it and covers herself with a towel while I do it. Styling it isn't a priority for her a the moment (though it was a big one before surgery) I guess that will come. She had a rather quiet day yesterday, I think she over did herself the day before. She was a little bit cranky that her body won't keep up with what she wants to do. She did say that in hind sight she was glad I held her back on a couple of things, namely the stairs. She said ahe didn't realize that a good day like she had would affect her so much the following day and she will have to "listen to mum" and pace herself. It was nice to hear her say I was right but I wish it had been for something other than this. All said she is still very positive and looking forward to getting outside. The only trouble now is rain is forecast all week and it's very grey outside already. Well here's to laps of the garage!
Cheryl.

[mumof5]

I forgot to say Pre-op Amber was 174cms (5ft 81/2in) Post-op 180cms (just under 5ft 11in). She was very relieved that I am still taller than her. (I am about 185cms).
Pre-op they did an arm span measurement saying it was a good indication of what your height would be if you were straight. Amber measured 190cms. Needless to say she panicked. That's around 6ft 4in. I think that the measurement was high because of her rib hump. I have checked it again today and I measure her arm span to approx. 182cms. Has anyone had this experience?Cheryl.

[Peggy]

Hi,
Hope Amber is continuing to progress well. My daughter STILL won't take her own shower alone. I stand by the door. She is so afraid of slipping. Tomorrow is the day I am making her do it alone. Sometimes it is sooo hard being a mom! We never did that measurement of the arm span. My daughter is 5'11 too and afraid of growing more. In answer to your message about having friends cheer her up...she is a total loner and really has only one friend that she spends time with and she has only talked to her once since the surgery. Doesn't want to have her over at all. It would be so much easier with peers to help. But she is the way she is and I can't change her. I just hope she changes socially as she gets a little older. Good Luck with everything. Its great Amber has such a good attitude.

[mumof5]

Amber is a bit of a loner as well and won't even ring anyone from school to let them know everything went well and that she is home. She had her first outing yesterday. It was very funny watching her get into & out of our car. We have a people mover and she has to climb up to get in. But our 3 yr old had to go to pre-school and so Amber had to go. We are going again today. That makes 4 trips a week that she has to do 'cause I won't leave her home alone. There is a bridge near our house that has started to sink and I am taking her to it today. Everyone has said that you can really see a bow in it, she is excited to see it.
Amber came up stairs for the first time today, I think she was getting annoyed that I wouldn't let her come up before. But her op was only 2 weeks ago today.
She is now using the excuse that it is too cold to have a shower. So I am going to put the heater for a couple of hours so that she can't complain. Maybe I should tell her every day that she can't go upstairs until she has a shower!
Good luck Peggy, things can only get better. If I think of anything that might help I'll let you know.
Cheryl

[Peggy]

Hi,
I don't know if this would help you but this is the way we do our showers. My daughter wears a long white t-shirt in the shower and washes under it. Takes it off just as she is getting out so that she isn't embarrassed. Funny I know, but it works. I don't blame you for not leaving her alone. That is good to make her go out. Wish we had a bridge about to fall here! Well, no I guess not really . But would like to have something interesting to bribe my daughter with. Good Luck to you too. By the way, what is a people mover? A van?

[mumof5]

Our 'people mover' is an eight seater van. We were only out for about 30 minutes this morning and when we got back Amber sat down then a few minutes later got up in a lot of pain and said I have to lie down. She had a pain in her side just above her hip bone. I gave her pain killers and she stayed in bed for a couple of hours. She says it's gone now. Thank goodness cause she looked pretty bad. Maybe we just have to be patient with this.
Peggy
Amber has suggested that you let your daughter choose where to go and within reason try to get her there. My suggestion is if you can think of a special treat ( ice-cream, burger, etc) that she only gets if she 'goes to get it'. Or maybe if there is something she really wants to buy, you could give a monetary reward for getting out and about. You know the further the more she gets. (hope she doesn't read this and then send you broke) Good luck.
Cheryl

[mumof5]

Amber has just asked me to post this:
When I sit down I can hear my back 'cracking' but I can't feel it, so I can't tell where it is coming from. Has anyone else experienced this?
Cheryl & Amber.

[Alison]

Can you try and describe the cracking a bit more. Is it more of the "cracking noise" that you can get when you move your wrists around or is that cracking noise that you hear when people twist and crack their back (I've never actually done this one myself, but I've seen many people "twist" and you can hear this cracking noise going down their back). Or is it more of an "empty" crack.

I agree with you that the differences in Ambers arm span is probably because of how they measured it (across the rib hump). I just measured my arm span by going across the top of my shoulders and then by across my back (which still isn't even on both sides and the measurement was different)

I know that people mover vans have pretty comfy seats, but an idea I have that you could try to make it less "back achy" afterwards could be for the moment taking a pillow/two pillows in the car ie one long one at her back and one on the seat. It might give her a bit extra support.

How was the bridge. Has it collapsed yet? It sounds exciting, I have never seen a bridge collapsing

Alison

[mumof5]

The cracking: Amber says it is more like a hollow - joint crack. It doesn't happen often. she thinks it is just everything settling. But says because she can't feel it is hard to describe. Amber doesn't seem to concerned and I don't know if I should be or not.
I don't think our bridge will collapse. It is about 50 years old. One of those opening span ones. It is sinking into the channel that it is crossing. There is a lot a ground movement around here. The water table is close to the surface and it is gradually sinking, so everything on top is going with it. Alot of buildings have big cracks because of. Maybe that's what happened to the leaning tower of Piza. She enjoyed going to have a look.
We have not long come back from pre-school and she does seem to be sore when she gets out of the car. Standing around is giving her the most trouble though. She doesn't/can't stand still and shifts her weight from foot to foot. Is this normal?
Cheryl.

[Alison]

As long as it isn't causing her pain, I don't think the "Cracks" are something to be too concerned about, but monitor it over a period of time and get it checked out if it continues or starts to give Amber pain.

Is Amber's difficuties with standing still more of a can't stand still because she feels fidgety or is it more of feeling faint. If it is a feeling faint it is most probably effects from the surgery. If it is more of a fidgety/wriggly sort of feeling, I have never been able to find/come up with a reason why, as I experienced a similar problem with wriggly/fidgetiness inability to sit still when sitting at my desk in school (when I went back after surgery). I asked my surgeon and then the physio about it many times, and they were at a loss to explain why.

My personal theory on it is that the body is trying to get used to being in a different position, but the brain is trying to tell the body that it is still in its olf position and mixed signals are coming through the body. I never quite got used to sitting without fidgeting (I have had special exam arrangements since year 10, where I have had an ergonomic chair and been able to get up and move around) but it did get better after time. My advice for now is to for Amber to try standing with a bit of a wider base (legs a bit further apart than shoulder width) and if she has to stand still for any length of time to wriggle her toes around.

Alison

[mumof5]

Amber says it hurts her to stand still. She gets pain in her hips which is sort of eased when she moves around. Maybe this is because they went to L4 and took a bone graft from her hip as well? Has anyone else had this happen? She is not sleeping well and gets up very stiff. She rarely takes anything for pain, preferring to move around for relief instead which is good in one way but also means she doesn't rest much. She is getting annoyed that she can't get up and just keep going. It's not her physical limitations but the pain, stiffness and tiredness. She remains positive and is happy. Her Aunt from QLD has just sent her a beautiful jigsaw puzzle of two dolphins. It even glows in the dark. I think our table tennis table may have a new use for a while. Maybe this will help with her standing.
Cheryl.

[Peggy]

Hik
My daughter has the pain in her hips also. The surgeon said this is because when the spine was crooked the kids leaned on their hips differently. Now that they are realigned correctly it is hard on the hip muscles because they aren't used to being straight! This will pass with time. It has been 6 weeks since my daughters surgery and she rarely has the hip pain now. She still gets uncomfortable when she is on her feet for a long time. Remember this is a huge surgery. It takes most kids 3-4 months to feel "normal". And longer than that to lose most of the side effects. Tell Amber to keep her chin up! And thanks for the hints about bribery, but unfortunately I've tried it all! I think she is getting more positive each day though. I've been doiing gardening the last few days and leaving her alone inside with her brace on and she is getting around without fear. Just needed a little push. Thanks again for the help. Hope you two had a good day~

[AndreaElle]

sickness before surgery

Hello!

I do see that you have had many replies, however, I just joined the site today and wanted to tell you my story!

I actually had a similar situation before my first surgery. I was 15 years old and had mono for months! Finally, my surgeon decided to go ahead with the operation even though I had the mono.

I am fine! I am now 27 years old and honestly quite happy that I made that decision to have the operation.

Before and after my surgery I had many people that wrote me letters and were able to identify with what I went through and was going to go through in the near to far future. I think that is a very important part of your daughter's overall look at the whole situation. As a mother, I think you should be proud of her strength, too! She may, indeed, be worrying about it-you have to! However, she could be handling it in worse ways, I'd say!

If you ever need anything at all..let me know!

Much luck and success and love to you both!
Andrea in Tucson, Arizona USA

[Alison]

Hi Cheryl,

This is simply a curiosity question, why did they take bone from Ambers hip instead of/ with bone from the bone bank. A glow in the dark puzzle, now that's something that you don't see every day, SPECKY :-) Thinking back i hindsight and after reading Peggy's thread, I'd have to agree that Amber's achiness in her hips most likely relates to that he went to L4 (I know that people find that the sorest part of their fusion is the top and the bottom and it spreads to the bits near it. Another question, "how" is Amber sleeping, what I mean by this is she taking pain killers before she goes to bed, is she on her side, is there any pillows around supporting her,

I think the most frustrating thing after a fusion is that your mind has not changed, you want to do lots, but your body just won't do iit or it'll let you do it, but you end up very sore and stiff.

Alison

Hi Peggy and Cheryl

This is a bit to Cheryl and a bit to Peggy (I am typing this between classes otherwise I would have reposted). Perhaps your daughter Peggy could wear flip flops/ thong shoes (I don't know what they are called in America but in Australia this is they call them) when she was in the shower it would give her a bit more grip/security on her feet in the shower.

I wish that I could relate to having my hips "Straightened". There was only a degree of correction from my fusion as it was more of a holding operation. But I like being "Crooked" (it has been a part of me for a very long time, and it is a part of what defines me) How was the correction that Amber gained, or your daughter gained Peggy from their surgeries

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