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

 
 
 
 

Important Updates


Update: 8-05-11

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.

 

New Update!

Update: May 9, 2013

Mikaela had her second MRI in April to check on the Gray Matter Heteratopia and Abnormal Pituitary Gland. They told us if nothing has changed over the past year they will just call us up and talk over the phone. Murad called me while getting Mikaela off of the bus after school and told me they wanted us to come in.

The morning of May 9th we went to Cedars to meet with Dr. Tavyev. She told us that the gray matter hasn't moved, which is good. She also explained new findings regarding the previous thought of extra ectopic pituitary tissue. The new MRI shows no pituitary stock at all, and actually a smaller pituitary gland then expected. The impressions are that she may have pituitary dwarfism and/or hypopituitarism.

We are scheduled to go see her endocrinologist in July, who was informed and saw the results to her MRI. So as of now we won't be able to answer any of your questions, except as to why Mikaela is so small.

It's all making sense to us now. We're very relieved and on a clearer path to helping her. There may never be an explanation as to why these rare occurrences happened to Mikaela, other than she might have been a twin. As I see it, if that was the case, Naomi came right after and we move on with life.

Once we have more information, I will update the website.