Shriners Update

[mylittleangel]

Im am happy to announce,with al of your wonderful advice!!! My daughter got into shriners.......Our first appt is Feb 5.I am so happy I cant explain it.Whats even more wonderful since we are driving 412 miles Shriners is putting us up in a Haven house room.Again thank you to all who took the time to inform and educate me on Shriners and the possibilities!!!

[mariaf]

mylittleangel,

That's great! I'm so happy for you - you sound so relieved, understandably

I'm sure you will be very happy with the care you receive at Shriners. Which one are you going to? I know you said you're in Arkansas and are driving 400 miles - are you going to Philly?

keep us posted,

[mylittleangel]

MariaF, im sorry that was a typo.312 miles.We will be seen in St.louis Missouri.It is a BIG sense of relief.

[amandap]

I'm so glad to hear you got in so quickly!!!

We go to Shriners in Philly but I'm sure you will be in excellent hands!

Good Luck and keep us posted.

Amanda

[mylittleangel]

1st Appt At Shriners

Hello I just wanted to update we went to our first appt yesterday at Shriners.First off id loike to say,what a wonderful place.Good news and bad came from the visit.My daughters curve is alot higher than I was told.It is actually at 42 degrees.The doctor stated he believes the previos Dr may have mis measured it,as he doesnt belive it would grow that fast due to her physical immaturity.I also found there were several other patients there who came from the same Dr I was seeing who were just as unhappy as my family.
Comments were made from the staff(none direct of course due to laws) also we heard conversations amongst the staff about here is another from the doctor good thing she came early on in treatment.We also heard them talking about a patient that they were having to "clean up the mess"that was made from the previous Dr.We were also urged to continue treatment at shriners.It is scary that all you hear is your are seeing the best...Then you see all these patients and realize you werent I am glad we went with our gut.
This Dr walked us through everything as the previous told us nothing and had a cocky attitude.
Well anyway her menstral cycle looks to be a year to two out.Which means alot more growing.The Dr told us we are prayiong that the brace does nothing more than buys us time.If she reaches 50 we discuss surgery.He also added to be prepared for it her chances are extremely high due to the growing left.I am so scared you know.I dont want this.I will admit it makes it easier when you are at a place you are confident in.Shriners had a very caring fun and loving atmosphere which I feel at times like this is equally as important.I hope everyone is well.

[mariaf]

mylittleangel,

I'm not surprised at how much you liked Shriners. The hospital in Philadelphia is the same way - the medical staff is incredible and, after staying with my son for nearly a week when he had his surgery, I told a friend that it was about "as pleasant a stay as one could possibly have in a hospital".

As for your daughter's diagnosis - I know that 42 sounds worse than 35 (that's what you were told before, right?) - but remember there is a 5 degree margin of error. If her curve is around 40, and it does not progress, perhaps surgery can be avoided.

Also, since she has some growing left to do, did you research the stapling procedure at all? Sometimes, at 12, a child is too close to the end of growth to be considered a candidate for it - but it sounds like that may not be the case here. Just another option that you might want to take a look at.

Best of luck - and keep us posted,

[rainbow2010]

I'm glad that all went well with your daughter's appointment. I know you had so many questions bfore. There is a big difference with a good doctor sharing all the information you need and answering your questions. We know how hard it is to get questions answered. One of my daughter's teachers approached her yesterday about being a peer counselor to another younger student with scoliosis. She was so excited that she printed off her xray to take and show the young lady. She is also going to give her this website!

[nikyergen]

Mylittleangel
As far as I am concerned SHRINERS is the BEST. I have three daughters. All that have had various orthopedic problems. The oldest has Kyphoscoliosis and had surgery and doing great. To see her go two years after surgery is incredible. You wouldn't even know she has had surgery. The middle daughter only has a very slight scoliosis and was done growing. She still gets checked once a year and nothing has changed. The youngest daughter has kyphosis and wore a brace for 18 months. She was still growing and the brace did stop progression and do some improvement. The rest of the improvement has been from her keeping her back and shoulder muscles strengthened.

I understand the long drive. We drove 250 miles one way. Shriners put us up at a local motel too. They are so awesome.

The best piece of advice I can give you is to take a deep breath on a regular basis. I lost lots of sleep and cried a lot. I was scared to death. Today, I look back, and realize I lost all of that sleep for nothing. It is a very serious surgery, but I had to finally put everything in God's hands. I know this is easier said than done. I remember another parent giving me the same advice.

Hang in there and you will get through this too. Another one of lifes stepping stones to go across.