Sunday, October 19, 2008

Arthrogryposis **UPDATE AT BOTTOM**

My Linzhi.

I know it's a pretty big word but both of my little girls can pronounce it. Our Linzhi faces it's challenges everyday. I decided to write about it because I want my little girl to read her mother's words one day and see how much she inspires me.
I praise God everyday, Linzhi has Arthrogryposis. I know some may scratch their heads at this but it's truely how I feel. Arthrogryposis is not a condition that will worsen, spread or keep her from living a long, happy, productive life. I have seen so many families hit with life or death situations that we will take Arthrogryposis with open arms. Yes, she will face her challenges that will require some accommodations and creativity but I have to tell you, our little girl would knock your socks off if you could see how she manipulates the rest of her body to get what she needs to get done!

Today, as I was holding my little baby from China, I was filled with emotion thinking we're almost at the one year home mark. I just held, kissed and sniffed her precious head thinking of all she has overcome and all HE has in store for her. I praise God when I hear her say for no particular reason "mama, I happy" Oh, Linzhi, if only you could get in mommy and daddy's head and heart to know how happy you make us. God blessed all of us with Linzhi. God blessed us with Arthrogryposis and the sweet victories we see when our little girl who was abandoned at a hospital stairwell can scratch her head and feel her hair on her own for the first time. I see God and his grace in all my children and I thank him everyday for all their special needs(cause none of us come perfect) and that CJ and I are able to care for and love them just the way they are.

A few have asked what is Arhtrogrypsois. Here is some information I received from stuff I've dug up on the Internet. All is in aligned with the doctor that sees Linzhi at Shriners. **Please note, Linzhi only has it in her elbows, hands, fingers and wrists. She is considered mild because it has only affect her upper exteremities.

Arthrogryposis is the name given to a group of disorders characterized by multiple joint contractures throught the body present at birth. In the U.S., it occurs about once per every 3,000 live births, and affects both males and females of all ethnic backgrounds.

CausesArthrogryposis is usually caused by decreased fetal movements in the womb. The fetus needs to move his/her limbs to develop muscle and joints. If the joints don't move, extra connective tissue develops around the joint and fixes it in place. Some of the causes of decreased fetal movements are:

· Malformations or malfunctions of the central nervous system (most common cause), such as spina bifida, brain malformations, or spinal muscular atrophy
· An inherited neuromuscular disorder such as myotonic dystropy, myasthenia gravis, or multiple sclerosis
· Maternal infections during pregnancy such as German measles (rubella) or rubeola
· Maternal fever above 39 C (102.2 F) for an extended period, or increased maternal body temperature caused by prolonged soaking in hot tubs
· Maternal exposure to substances that can harm the fetus, such as drugs, alcohol, or phenytoin (Dilantin)
· Too little amniotic fluid, or chronic leaking of amniotic fluid, may cause reduced space for the fetus to move around
SymptomsThe particular joint contractures found in an infant with arthrogryposis vary from child to child, but there are several common characteristics:
· The legs and arms are affected, with wrists and ankles being the most deformed (think of the fetus folded up inside the uterus, locked in that position)
· The joints in the legs and arms may not be able to move at all
· Muscles in the legs and arms are thin and weak or even absent
· The hips may be dislocated
Some infants with arthrogryposis have facial deformities, curvature of the spine, genital deformities, cardiac and respiratory problems, and skin defects.
TreatmentThere is no cure for arthrogryposis, but early vigorous physical therapy can help stretch out the contracted joints and develop the weak muscles. Splints can also help stretch joints, especially at night. Orthopedic surgery may also be able to relieve or correct joint problems.
Ultrasound or computed tomography (CT) scan can identify any central nervous system abnormalities. These may or may not require surgery to treat. Congenital heart defects may need to be repaired.
PrognosisThe life span for an individual with arthrogryposis is usually normal, but may be altered by heart defects or central nervous system problems.

Information for this article was taken from:Chen, H. Arthrogryposis. eMedicine, accessed at http://www.emedine.com/ped/topic142.htm

6 comments:

Anna 'B'anana said...

Isn't it amazing how God expands our hearts and our abilities and that the things we once saw as trials become our greatest blessings????

What a sweet post for your beloved Linzhi. You are so blessed!

Katy said...

What exactly is Arthrogryposis?
Your sweet little Linzhi is a doll and I am so happy that she has found a loving family that is centered on God! She was born to be your daughter! God is so good!

Jessica said...

Hi Amy!

What a wonderful post! Thank you for educated me (us) on Arthrogryposis. What a blessing you have found in her and she from you all. I am so glad to have met you and your family through this journey :)

Can you believe we are getting ready to reach a year? I just had Jude's 12 month post placement meeting and we were looking back at how far he has come in just one year. We have also been blessed!

I would love to adopt again...it is so dear and close to my heart...it's just not the time right now. I've been praying and know that God will make it happen if it's meant to be.

Have a wonderful week!

Hugs~
Jess

Barbie said...

What a blessing she is! I am sure it is amazing to watch her and see her overcome any obstacles before her. God is good!

Katy said...

Thank you for giving us that info Amy! I have never heard of it before! I am so glad that Linzhi's case is so mild! Does it cause pain or just make things more difficult for her?

Sherwood said...

Thank you for writing this.

Our son, Luke (light) Benjamin (son of my right hand), has Arthrogryposis. I find it hard to explain to people how "PERFECT HE IS".