Mikaela Frances Jane

A website for our family and friends to keep up with Mikaela and her Arthrogryposis. Also to help families find their way through this journey.

"Strength does not come from physical capacity. It comes from an indomitable will." - Gandhi

Update on 8.5.11


Latest News!

Mikaela had her eye surgery on July 18th and is doing great! The surgery that was performed on her was called Strabismus. It was her left eye that would pull to the side when she was tired, but to make sure her eyes would be symmetrical, they did both eyes. It will take up to 6 weeks healing time.

We also went back to Cedar Sinai to see Dr. Graham who is a Geneticist, referred to us by Dr. Hall. We were really looking forward to this appointment in hopes that they would tell us what exactly Mikaela has and why. Well, we found out what she has but there is no definitive reason as to why she has it. We brought our briefcase full of every paper ever written up about her and all the tests that were performed since she was born. The doctors reviewed everything, researched their records of diseases and no one matches up to Mikaela's exact condition and none of her conditions link to one another. Dr. Graham told us there are only two reasons he could think of as to why this would happen. One, I had a virus or infection (none were found). The second reason would be that Mikaela was a twin. He told us that 10% of twins do not make it past 8 weeks. It's called Vanishing Twin Syndrome. What happens is when one twin dies, the water within the twin's tissues, the amniotic fluid, and the placental tissue may be absorbed through the other twin and can cut off the blood supply, which would cause Mikaela's Amyoplasia Arthrogryposis, Gray Matter Heterotopia and Ectopic Pituitary Tissue (Extra tissue surrounding her pituitary gland). As of now, we do not have an answer as to why any of this has happened. Twins do run on both sides of Murad's family, and it does bring joy to our hearts knowing Naomi came so quick after Mikaela, but again - we do not know for sure.

We will be seeing an Endocrinologist at the end of August to have Mikaela's hormone levels checked. Because of the extra tissue on her Pituitary Gland, Dr. Graham believes this is why Mikaela is so small. I will update everyone once we know more.

Mikaela will also be getting lots of new therapies to help her reach new goals. A few doctors have noticed that Mikaela's ankles are low toned, so she will be getting AFO's very soon. AFO's with help Mikaela gain balance and support her so she can start taking those first steps!

We also just got back from the 6th Annual AMC Convention! It was held in Kansas City, MO. To see more about it, please visit AMC Convention 2011.

And when you have the time, please visit the new page - The Sweetest Gift. You'll be thankful you did.