new here with recently diagnosed toddler

[Andis]

hi all! my name is andi and my daughter was diagnosed with congenital scoliosis in october. we had xrays and went to the orthopaedic surgeon in our network and it was terrible!!!! he basically said to bring her back in a year. he didn't even go over her xrays with us, just basically read the radiology report to us, scheduled a renal ultrasound and sent us on our way. the xrays showed a hemi at t5, a hemi at t9, fused ribs at t4/t5, missing rib at t9, 30degree curve between t4 and t11 and a compensatory curve below all of that. renal ultrasound came back okay.

naturally, i was not okay with this so i rode out the holidays, did some research and bummed around support threads (thank you for being here!!!). in february i made an appointment for Odella to have a second opinion. that was yesterday and it was so much better than the first appointment!

we did new xrays with her standing--her curve is now 38.3degrees. her new doctor wants an mri and ekg and believes that surgery is the only way to correct the problem. he wants t9 out first as it is causing the most trouble and then he thinks the fused ribs need to be unfused because they will act like a tether inhibiting growth. t5 he is undecided on, it is small but will likely need to come out too. this is still a bit of a waiting game too because she is too small to receive the implants still.

anyways, that is where we are now. it is scary and overwhelming and i would love comments, suggestions, support or whatever!

thanks again for being here!
andi

[Andis]

i think i added her first xrays to my signature. the second ones i don't have copies of yet.

[Amazed Jean]

Welcome to our world at SSO. Try to keep in mind that it isn't anything new. I am glad you found a doctor that is a lot interested in your child! Things to help you: lots of reading and write down questions you may have. Try to take someone else with you to appointments to help take it all in. Stock up on bubble bath and adult beverages to relax when you can! Sending hugs your way!

[GillyG]

Poor little love, that's a lot she has going on there I'm so glad you managed to finally get seen by someone who actually gives a damn! We are all here to help and support you along the way, I'm glad you've joined us

[tiffany.m]

Wow, she's a brave young lady and you sound like a very strong and determined mother.

Wishing you all the best x

[Andis]

thank you thank you for your replies! it is nice to go somewhere where other people are going through similar things!

i added O's xray from monday as my avatar! it is a mirror of the first ones because it was taken standing instead of lying down, but you can see the difference--30 to 38.3 degrees.

[Andis]

we got a call from Dr. Lark yesterday. he had a round table discussion with his colleagues about Odella and they came up with a plan of action. they feel that surgery is about a year out because she is so small and they need the implant to not be too big. so what they want to do is excise t9 and put in an implant and then for t4/t5 they want to fuse the spine instead of excising the hemi and unfusing the ribs. i'm not sure what the pro's and con's are between fusing the spine and excising the hemi. i have a bunch of questions but am glad there is a plan and a time frame. we should have an appointment set today for her mri too and then we will meet again with Dr. Lark after that.

all day yesterday she carried around a copy of her last xray and kept pointing to her back. she loves to look at it! she's a silly lil' bit!

[GillyG]

Oh bless her, she sounds adorable, give her a little hug from me It's good to have a time frame, something to work to at last. Please keep us updated with her progress

[andrea]

Hi Andi and welcome to SSo (I was an Andie at university, but used my "Sunday" name when i left ). I'm sorry to hear about your daughter. What a brave little lady she must be. Unfortunately I don't know anything about congenital scoliosis, other than it seems to behave differently in all the cases I have come across, but wanted to say we're all here for you.

Please let us know how she gets on
Andrea xx

[Sandra2e]

HI Andi, so sorry to hear about your daughter, how old is she? She does sound like the cutest lil thing . I so feel for you and your daughter, you have a road ahead of you . Thankfully you seem to have found a good Dr that means a lot, and they have a plan in hand , Great. Again I don't know alot about congenital scoliosis, but I am sure there a lots of others on this site who will be able to advise you and help you with lots of information. Finding this site was one of the best, comforting things for me, your so not alone when your on this site. There all so good and understanding and will always be there to listen to you, so you have made a really good move.

I wish you and your cute little daughter all the very best.

Lots of good wishes

xxxx

[Andis]

thank you all for the kind words!

Odella will be 2 on may 2nd. it's going too fast, soon she'll be 18 and i'll have a hard time letting go...

so we have her mri schedule for may 31. i'm dreading putting her under but i know they have to or she won't be still. i am glad to have it done though.

[JENNY14]

Best Wishes!

[Sandra2e]

Originally Posted by Andis

thank you all for the kind words!

Odella will be 2 on may 2nd. it's going too fast, soon she'll be 18 and i'll have a hard time letting go...

so we have her mri schedule for may 31. i'm dreading putting her under but i know they have to or she won't be still. i am glad to have it done though.

I understand, my eldest Laura is coming up to 19 in April, Karen will be 15 in April, oh believe me when they tell you the Best Yrs are the Baby yrs they are not wrong, at least at night you know where they are safely tucked up in bed, since laura turned 18 and thinks she can stay out and come and go, Oh My god, I just don't sleep, text her constantly, and yes the years FLY in I just can't believe my girls getting so much older, so treasure Odella, they are really the best years

I will be thinking of you for Odella's Mri, I know it seems scary but it isn't really she will be fine, and you will be so glad to have over. I have had it done myself and its not easy to stay in the one position, so if they can relax Odella so much better for her, she will be fine, a right little trooper she will be......

take care and best wishes to you both, I really hope all goes well......

Look after you too try have your little breaks with your good friends to recharge your batteries every now & then

xxxx