Tuesday, August 26, 2008
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!
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.