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Tuesday, August 26, 2008

Hemihypertrophy


When we learned of Norah a few months back, her special need, they said, was left hip dysplasia. We were sent an xray of her legs by the orphanage and I was just thrilled at that. I took it to work a few nights later and had one of the ortho guys look at it. He told me that if it was indeed hip dysplasia, it was the mildest that he had ever seen.
When Norah joined our family in China, I did what every mother does. I counted all 10 fingers and toes. I also noticed that her left leg was smaller than the right. It was shorter as well as smaller in circumference. She was walking in China, but it wasn't without falling alot and needing to hold my finger.
When we got home, Norah started walking really well. She wasn't needing assistance. She was and is all over the place. She seems to have compensated for her limb difference (2 cm when we went to get her medical check-up in China) and for the most part she doesn't let anything slow her down.
Before we left for China, I made an appointment for her at MUSC Children's Hospital with a Pediatric Orthopedic doctor. He basically said that she does not have hip dysplasia, she has what is called hemihypertrophy (hemihyperplasia).
Hemi, as it is generally called, it a rare condition that is characterized by the unequal growth of one side of the body. Hence, why one leg is bigger than the other. It can affect the outside of the body and/or the inside as well. There is an increased risk for childhood cancers in people with hemihypertrophy (about 6%), particularly cancers of the kidney (Wilms tumor, 3% of individuals), adrenals, and liver. So Ms. Norah will have a full schedule I think. Her treatment plan will be:

-Once a year (maybe more) visit with her Ortho Dr at MUSC
-Blood work every 6 weeks to check her AFP until age 4( alpha-fetoprotein) levels - for cancer
-Ultrasound to check for tumors (Wilm's Tumor) every 3 months until the age of 7
-A friendly visit with the local podiatry clinic to fit her for lifts for her shoes
-She will also see a Geneticist to get a conclusive diagnosis.

Lifts are used in her shoes to help compensate for her limb difference. She doesn't HAVE to have them, but it will help deter scoliosis and hip problems due to the unnatural way that her body moves when she walks.

She will be able to play sports, take dancing, run, anything that normal kids can do. Hemi will not shorten her lifespan and she will not be discouraged due to her special need. She will be encouraged to live her life to the fullest.

There are a few websites that you can visit if you want to learn more. I am still learning everyday and I am sure that I still have alot to learn!

www.hemisupport.com
http://www.geocities.com/HotSprings/Spa/6112/

So that is where we are right now. We will be seeing someone in the next few weeks to have her fitted for a lift and we will also schedule her ultrasound and blood work. Please pray that our insurance will be cooperative and cover some of this! We have not always had the best of luck with them! Also please pray that her body will remain cancer free and that all of these routine tests will not take a toll on her body and spirit.

I love being her mother. I love the fact that God chose ME to be her mom, out of all the other women in this world. I just cannot imagine what we ever did before her. She is just an amazing little girl, already touching lives by her smile. I will never be the same.

48 comments:

Janet said...

Hi Pen,
That sounds like a lot of stuff going on for Norah! But now she has a loving family of her own, I am sure she will cope with all the testing she will face and thrive :-)
Take care
Love
Janet (yaya)
xxx

Mac said...

Hey Pen,
Sounds as if Little Norah has a quite a schedule in front of her, but she has the best parents to help her through it. She will flourish.

Anonymous said...

Hi Pen,

Norah will be tested lots but with the strenght of mom and dad and prayers she will come out on top. I will definitely pray that she will stay cancer free. What a specila gal you have and sh eknows she is loved. With you and Shannon how can she not do well. Here is a big hug to you
Carolyn

Sarah said...

Hi, Recently came across your blog while researching for my daughter as one of her diagnosis is hemihypertrophy. I am going to add your blog to my blogroll, hope you don't mind.

Sarah

Justin said...

Hey my name is Justin. I'm fourteen years old, and I have hemihypertrophy as well. i've lived with it for many years now, but there has to be some way to make my right leg normal size. If there is a muscle exercise or a compound to inject into my leg that would make it normal or even just normal in my thigh area i would greatly appreciate it. It is ruining my life and the more I think about it, the more i wish I didnt have it. You gotta help me out

Justin said...

my email is live4sk8ing95@yahoo.com please contact me

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kaylee said...

Hi Pen:

My name is Kay Lee Bevans. I am 14 Years old. I was born with Hemihypertrophy and i have had my struggles. But God was good to me and kept me safe as i hope he will to your little one :)... I didnt get cancer and i didnt need a lift, i had surgery a little while back and they inserted 4 in long 2 inch wide bolts into my right knee growth plate so it would stunt the growth for my leg to even out my hips for child birth. All is well and i am so pleased that this little girl got you as a parent. I go to Shriners Hospital in USA and they are AMAZING!!! look for them. they do the type of my procedeer 20 times a day so they know what they are doing. I have been going there since birth and i would requimend them to anyone. But since ive gone there forever, i have seen some things. I have seen little boys and girls with no legs or arms and have it way worse than me. and all that makes me praise my lord for he has treated me well.
God Bless and i wish you everything good to come to your family :)

love sister in christ;
KayLee :)

kaylee said...

email me i have a lot to say :) i had hemyhypertrophy and my page is too long
peeweebevans@gmail.com

love sister in christ
Kaylee Bevans

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