Son with Down syndrome spinal fusion March 29

[Lura]

I just found this site, so I hope I can get some responses! My son is 12 years old, Down syndrome, and has scoliosis. His surgery is fast approaching, and I am terrified! I cannot explain it to him (he's cognitivly 4). Any one else with Down's kids with scoliosis? Any advice from anyone is greatly appreciated!

Thanks!
Lura

[nikyergen]

Lura,
I wish I could help you with your Down Syndrome situation, but I have no experience in it. My 16 year old daughter has no handicaps to deal with. She was actually able to make her own decisions about her surgery. I think it surprised the doctor and nurses that we just looked at her and said "You've been given all the facts and now you get to make the decision and we will support you in whatever decision you make."

I can understand the terrified about surgery, but you have even more stress than I do. My 16 year old daughter has surgery on 3/15. Fast approaching. We are getting prepared to leave tomorrow afternoon. We have a ranch, so it takes a lot of work round here to leave for even part of a day, let alone a week.

Be sure to read different posts. Some of them are just comforting, and knowing you aren't the only one out there. When you have a fear, just post on your original post. Someone will notice that there is a new post and will sooner or later reply.

I will be checking the posts while we are in at Shriner's Hospital in Portland. So, if you just need to talk, leave a post. I'll be looking for it. I check it on a very regular basis.

I am praying for you and your family.

'til later,
Nikki

[Lura]

Nikki,
Thank you so much for replying so fast! I was afraid I'd posted too late for anyone to respond.
I will say a prayer for your daughter and her doctors. We are going to Shriner's in Spokane, checking in on Easter Sunday by noon.
I think the most difficult thing for me is preparing Alex for surgery, there is really no way. Cutting his finger nails is major trama.
As for reading the other posts, I was up past midnight last night doing so. There are so many great postings, and a few I wasn't prepared for. I got some peace and some anxiety!
Please keep in touch and let me know how surgery goes!

Lura

[nikyergen]

Lura,
We considered using the Spokane Shriner's Hospital. The only reason we didn't is that all of our family is in the Portland area. I really enjoy reading the posts. Because, I can say "Gee, I'm a normal mom." You aren't the only one that has so many feelings going on about this surgery.

If you are worried about your son getting an IV and things like that, they will give him an oral sedative if you need them too. The hospitals are so good about that. If they don't offer it, don't be afraid to ask for one. That will take some of the trauma out of the getting ready to go into the O.R.

You may want to read our thread called "Getting Ready for Surgery." I started it, but there have been a group of moms that have joined in on it. Sometimes we write about our worries, other times we just try to laugh and visit. You are more than welcome to join in on it. There is also another forum called spinekids.com. It is pretty good too. I find that when one of the forums isn't very active, the other one is. So, I jump back and forth with them. Join in on any thread (post) that you are interested in. Everyone here is great.

I think we all pull a lot of spiritual strength from each other. As, you will see we all pray for each other.

If you have any questions, please ask, ask, ask. There is never a silly question. If you think of it to ask, it is worth asking.

I look forward to your next post. You will be amazed people are on these forums 24/7.

'til later,
Nikki

[Lura]

Nikki,

Alex doesn't tell us when he hurts (teeth, head ache, sore throat) so I spend a great deal of time guessing. I was reading the thread you recommended and you indicated that Crystal has had a great deal of back pain, what is the degree of her curve? Alex's was 27 in April of '04 and 43 in December '04. I don't know if he is in pain, but the doctor indicated he should be.

The thing I am the most nervous about is the surgery (waiting). I have a great support system, so I won't be alone. The hospital will probably kick someone out as my dad and his wife, my mom and her husband, my ex-husband and my fiance will all be waiting. I am so greatful.

Alex is my only child, so I am extreemly over-protective. This adds yet another element to my stress.

Thanks for the responses, it is really helping!

Lura

[Gail]

Hi Lura,

I have a sister who has Downs Syndrone and is 49 yrs. old. What a Blessing she has been to our family. I understand your fears and concerns and will be praying for you!

Kindest Regards,
Gail

[nikyergen]

Lura,
Crystal has a 58degree Kyphosis. She has a lot of pain, because she works so hard to stand up straight and her muscles get real sore. I was thrilled to hear you had a doctor actuallly say that your son probably has pain. So many of the doctors say these kids don't have pain from scoliosis/kyphosis. It is nice to know that there is a doctor out there that feels differently.

I have a friend that has a 23 year old son that has some handicaps and is autisic. He doesn't tell her when he hurts either. She watches his mood changes. If he gets really pushy and moody, he usually has a bad headache or is not feeling well. I've spent a lot of time with her over they years and got to where I could tell he wasn't feeling good too.

Well, today is the day that we leave for Portland. Crystal is admitted to the hospital at 1pm tomorrow, with surgery at 7:30am on Tuesday. I've slept pretty good the last three nights, however my stomach is really giving me what for this morning. I'm going to get some pepto on my way to town, mayb that will settle it.

I'll keep you posted on how surgery went and how Crystal's recovery goes. She is bound and determined that she is getting out as quick as possible. She hates hospitals and has seen to many of them, she has severe asthma.

Well, I need to get. Have things to get packed.

I'll keep you in my prayers.

'til later,
Nikki

[lorrie]

Hi Lura,
I do understand how hard it is to explain things to youngsters with cognitive problems: my daughter doesn't have Downs (she has cerebral palsy) but she does have cognitive difficulties. We find that you need lots of repitition and just to talk about things in everyday conversation (sometimes she gets upset and then we drop it and just cuddle her till she calms down) The other thing we have found helpful was to borrow a plastic spine and pelvis (life-sized - we called him Elvis) from a local hospital's physio dept. Luckily we have a friend who works there. Genevieve is not good at abstract things - you have to make things concrete for her to understand so being able to say "This is in your back" and have her feel the knobbly bits on her sister's back was a big help.
The other thing I've always done with her is to not understate how horrid things are going to be "It's going to be really nasty for a while but we'll be here to look after you and it will be better afterwards. It will help to keep you well and we've got a new stock of cuddles in specially for you".
We've always told her it's OK to be scared too.
Hope some of this helps - I'll be thinking of you.
Lorrie

[Lura]

Lorrie,

Thank you for your thoughts. Has Genevieve had surgery, or are you preparing for it? I wouldn't trade Alex for the world, he has been such a blessing. My heart is breaking knowing what is ahead of him.

There is a woman here (I live in Montana) who wrote a play called "Same Difference." The play is about people with disabilities in an inclusive environment. Alex is starring in the play this time and it is fantastic. There are children and adults with and without disabilities in the play. It puts a very positive spin on including people with disabilities in everyday life. I truly appreciate her for writing this play. My degree is in Elementary Education, so Alex has been included in regular education classes since first grade. Sorry, I am rambling!!

Lura

[Lura]

Gail,

Thank you for your kind thoughts! Alex is an amazing little boy, and the absolute love of our lives. I often say that if Alex had to be born with a disability, I'm glad it is Down syndrome. Alex loves music, appreciates every thing, is kind to everyone, and approaches every day with a smile. But you know what I mean!

Thank you for your thoughts and prayers!

Lura

[Lura]

Nikki,

You will be in my thoughts constantly, especially on Tuesday. I was telling my mom and Scott (my fiance) about Crystal's surgery and we will all be saying prayers. I hate so much that our children has to endure this surgery and I hate that we, parents, have to watch them go through it, but how great that we have this site so we can connect with others who are as scared as we are!! I am very thankful for you, Nikki! Be strong and let me know how it's going when you can.

Lura

[SarahH]

My son Trenton will be having surgery this Thursday. He is 11, hearing impaired and developmentally delayed. His curve is 77% and he doest complain about pain, yet I do know he is uncomfortable. We have explained alot about pain, what the surgery will do, and best of all... all of the fun things he'll be able to do after surgery. I have focused more on the positives, even telling him that he'll get gifts,balloons, etc... I hate to sound superficial, but he needs something to look forward to. That is how his little mind works. I'll keep you posted on what works or doesnt. Take care, and please know that your not alone!

Hugs!
Sarah

[cdhheidi]

SarahH

Sarah,

Be sure to check in with the Child life department and the play room. They have some good stuff to play with, and you can choose what he would like and bring it back to the room (including videos... they have a huge selection!) until he is ready to go himself to choose. And thats pretty good incentive too... Sean loved to play pool and air hockey, and they also have a PS2 and Xbox with a fairly decent selection of games to play as well in the playroom itself.

Will be praying for surgery to go well this week....

check your PM for a note from me with my email addy....

Hugs, Heidi

[lorrie]

Hi Lura,
Genevieve has not had surgery yet - we expect to get a date any minute ( we got a letter six weeks ago telling us surgerywould be in 6 - 10 weeks) and do feel a bit like we're living on the edge of a precipice waiting for instructions to jump! Genenvieve is currently on antibiotics for a chest infection so we're just keeping our fingers crossed it clears in time!
Regards,
Lorrie

[Lura]

Sarah,

It is so nice getting replies from moms of children with special needs. The one thing I've said over and over is that the disability should be enough for these little ones to deal with, but I also believe in God, so I know there is a reason for everything.
As for the gift and balloon idea, there is nothing wrong with painting a rosier picture.
Are you going to a Shriner's hopital? We are using the Spokane unit. It's comforting to us who are waiting to have a few going through it and then walking us through it, I know that I find some comfort in the knowledge and look forward to passing on some words of wisdom as we go through the surgery.
I will pray that all goes well, and look forward to the successful news from you when your little guy is all done.

Good Luck!!!

Lura