Update on DD 7

[DisneyMama63]

We picked up her brace Friday. It is a Milwaukee brace with a rainbow design that DD picked out. Friday we were given this schedule:
A schedule for wearing your brace:

Brace wearing is a gradual buildup of time per day in your brace. It will take 2 to 3 weeks until you wear your brace full-time. The following program is designed to help your skin and muscles adjust to having the brace on.

Stage 1

• Wear your brace 6 hours per day. This is best accomplished after school and up until bedtime.
• Apply the brace for 2 hours. Then remove the brace, check your skin, and rub with alcohol. If your skin is just pink, re-apply for 2 more hours. Repeat up to 6 hours total
• If you skin is sore and red, wait 30 minutes, then rub with alcohol and wear for 2 more hours up to 6 hours total.

Stage 2

• Increase wear to 10 hours per day. This is best done over a weekend (only one weekend is necessary).
• Put the brace on for 4 hours. Remove the brace, check your skin, and rub with alcohol. If your skin is just pink, re-apply the brace for 3 hours. Repeat up to 10 hour total
An alternative to stage 2 is to put the brace on and leave it on until it bothers you. Remove and check your skin. Try to increase the time you wear the brace each day.

Stage 3

• Wear the brace 18 hours daily.
• Put your brace on before school. At lunchtime, or about 4 hours later, take the brace off and check your skin and rub with alcohol. Your school nurse can usually help with this. Put the brace back on until after school.
• After school, remove the brace for 6 hours, then reapply at bedtime and sleep in your brace. If you wake up the first night, take off the brace and go back to sleep. You need to be rested for school. If you wake up on the second night, try to roll over and go back to sleep with the brace still on.

Stage 4

• Wear your brace 23 hours per day. You may be out of the brace one hour each day for dressing and bathing. If needed, you may have additional time out of the brace (1 to 2 hours each day) for team sports.

When you are able to wear your brace 23 hours each day, congratulate and reward yourself. You have achieved your goal!



Getting through the six hour requirement the first day was very difficult for my DD. She cried basically the whole time about how painful it is and how ugly it makes her.
When we went to pick up the brace. I asked about a possible cause for her scoli. He did a neurological exam and felt a MRI is in order to make sure everything is okay. She is scheduled for a sedated MRI on Monday. Any tips to make her feel less scared? Can I go into the exam room with her?



Any advice?

thanks in advance

Caitlyn

 

[LindsayDunn228]

She also said" Mama, now I am a freak like my sisters". It broke my heart.

 

[3kidsmommy]

How old is your child? I can't remember...as for the MRI...I believe you can be in with them--I was always in the room when my dd had to have them. When she was 4, I even rode in the machine with her! (and yes, it was a very tight fit, but she didn't have to have any sedation at all that way.) And, I have to ask---why did your dd refer to her sisters as freaks? That broke MY heart. Maybe I just read it wrong? I had a very good friend in high school who wore a brace for scoliosis the entire first two years we were in school. She ended up having to have surgery, but noone ever said a cross word to her about the brace...especially when the school nurse explained how important it was for her to wear it! Best of luck!

 

[LindsayDunn228]

And, I have to ask---why did your dd refer to her sisters as freaks? That broke MY heart. Maybe I just read it wrong? I had a very good friend in high school who wore a brace for scoliosis the entire first two years we were in school. She ended up having to have surgery, but noone ever said a cross word to her about the brace...especially when the school nurse explained how important it was for her to wear it! Best of luck!

You are nicer than me. That comment didn't break my heart, it pissed me off.

 

[BriNJ]

Getting used to this brace is really hard, but its better for her to do it now. A friend of my cousin had to wear one when she was 11 and it was really hard on her. BUT she did it and her scoliosis resolved and she is an absolutely beautiful adult, in perfect physical shape, she is a coach at a university and she's married with a child. It can work and for her, it worked really really well. I know that she doesnt regret it- and it taught her to take good care of her body.

Give your DD time on this, it's a process. All you can do is remind her that she needs this for her body to grow correctly. And give her time out of it, within her control so that she can tell you when she's had enough (but limit that time so its not counterproductive).

About the comment about being a freak- she's not a freak, nor is anyone who has a physcial challenge. I know that your other 2 dd's are special needs and it really does break my heart to hear your oldest refer to them as freaks. I would quite angry to hear that word from her, as a sibling to 2 special needs children she should be thier advocate and not hurtful towards them. I'd really consider why she is saying something like that and between this and the brace, she might need counseling to deal with her life-situation. I know that she was lashing out in anger, but its just not an acceptable comment, unless you refer to her sisters as freaks.

What a hard situation for you, as mommy. Hugs to you.
Bri

 

[DisneyMama63]

DD did say that. after she did, she said mama, I am so sorry. I didn't mean to hurt you or their feelings. I then hugged her and she burst into tears. she said I am sorry and hugged her sisters and kissed them. I then explained that none of them are freaks and that they are all special in a good way and I love them all. She is getting much better adjusted,.

 

[DisneyMama63]

Today, I gave her a small prize for being cooperative and wearing her brace with no complaints. I gave her a coloring book with a new set of crayons. she has been colorign with them all day and ever offered to share them with her 3 year old sister.

 

[BriNJ]

Your news is great to hear. I'm glad it was an outburst, unfortunately I've heard too many people refer to SN kids that way (I'm sure you have too). It would be awful if she did feel that way. I'm glad to hear she wore the brace today and did well, its such a hard change for a child.

Keep us posted & HUGS!
Bri

 

[Earstou]

Does she know that the MRI machine will make very loud thunking noises, and that the noises will probably change? Knowing this will help make it less scary for her. I've had 7 or 8 MRIs, so I've spent alot of time trying to entertain myself! One game I've played is to think of the sound as something else, maybe a jackhammer, then when it changes, maybe a giant playing the piano (very badly!!). Or I try to think of a song that the thunking sounds like. Having something else to think about makes the time go faster.
Good luck tomorrow!

 

[luvmarypoppins]

I was thinking of your dd. Prayers and blessings to her and your family. I sincerely pray that the brace works. You saw my previous post. My condition was so bad they just skipped the brace and went to the surgery. I hate to say this but I was in the hosp. with alot of girls who wore the brace and they ended up having the surgery in their teens, they were really resentful like you made me go through all that etc. and I still have to have the surgery etc. After alot of venting they were o.k. They were actually jealous of me, what, just because I didnt wear it we still all had to have the operation. I dont mean this to be rude etc. Just saying what happened in my actual situation. Besides anything neurological are they looking at any other causes, 2 of the people with me had it because of polio and cerebral palsy, one girl had a history of addisons disease in her family and my own family doesnt have such great genes either with marfans syndrome. Sometimes its just the idiopathic one and they can never pinpoint the cause. Maybe I will run into you in the world in April. Bless your little