Moya-Moya Huh? What is that?

This is a common question that we have been recently asked. When we first heard the term is was about a year ago (May 22, 2009). It was after Mattie had her strokes and the doctors at the time "suspected" she had a rare disease called Moya-Moya, it affects about 1 in 2 million. At first Dan and I could not comprehend it and we called it every name in the book from Maui-Maui to Mooey-Mooey. Over the past year Mattie has had one cerebral angiogram and recently a MRI/MRA. Last week she was officially diagnosed with the disease Moya-Moya.

So what does this mean?

Moya-Moya syndrome is a progressive disorder that affects the blood vessels in the brain. It causes stenosis (narrowing) of the carotid artery in the brain. The carotid artery is responsible for delivering blood to the brain. When the stenosis occurs, it makes it difficult for blood to pass throw the artery and the result is a stroke. At the same time tiny new blood vessels form and open up to attempt to supply blood to the brain. These tiny vessels are called Moya-Moya. Moya-Moya is a Japanese word for "puff of smoke". On a brain scan these tiny vessels look like a puff of smoke. As stated in the beginning it is a progressive disorder and there is no cure for it and as patients get older who are diagnosed with Moya-Moya they will eventually experience side affects because there brain is not getting enough blood. Such side affects are headaches, TIA's (mini-strokes), major strokes, bleeding on the brain, numbness and seizures.

There are a few surgeries that can be performed to help with re-directing the blood flow to the brain and the surgery would help with reducing the side affects of the disease.

Mattie will eventually have the surgery we are just not sure when it will happen and more than likely she will have side affects to Moya-Moya but we don't know when. It could happen today, tomorrow or 3 years from know. My husband likes to describe it has a little bomb in her head and we never know when it will go off. Of course Mattie is so young and because communication is hard for her she may have experienced something but we don't know. It is up to Dan and I to watch her and her behavior to make sure she is acting ok and if we suspect anything seriously wrong we are to take her to the hospital.

From what I understand the surgeries have been very successful and allow patients of Moya-Moya to live normal lives.

The other questions we get is how did she get it?

The answer to this question is we don't know and no one knows. It is known that the disease is genetically hereditary in the Japanese cultural but what causes it is unknown.

Mattie has secondary Moya-Moya and that means that the disease occur ed because she has another underlying genetic condition, which for her is Down-Syndrome. With this there was something in her brain that just did not form correctly.

There are also healthy people who all of sudden experience some problems and they are diagnosed with Moya-Moya, it could basically happen to you. The chances are rare but it could happen. The chance for Mattie to get Moya-Moya is one in 2 million. Crazy Huh!

At this time Mattie is doing great and we feel that she has not had any side affects. She has re-gained the use of her left side and is showing great strength and use of the left side. She takes 1/2 tablet of low dose aspirin every day to help keep her blood thin. She has another MRI/MRA in 6 months to see if there has been any changes with the Moya-Moya vessels and the stenosis of the artery.

So that is the update on Mattie and what is going on with her and our family. It is something that is very hard to understand and there are numerous times during the day that we think about it. We just never know what the next step will be. If anyone has any questions please feel free to ask. It is a new learning experience for us and questions are what helps us learn and get to know the disease a little bit better.

Yard work

This weekend we all headed outside to do some work in the backyard. Dan taught Michael how to mow the lawn and he really enjoyed, except I realized the picture of him he has a scowl on his face so it looks like he does not like it. David loves the lawn mower and follows it around laughing and screaming. Mattie tolerates it but she hung out on the patio the entire time playing with her garden set. I did not get any pictures of the garden but it is hanging in there. The biggest thing is the zucchini. This week we have pulled 6 giant zucchini's from one plant. We have had a few raspberries and blueberries. I planted spinach early this year and it has done really well and we have been eating that. Also we have had about 5 cucumbers in the past two weeks. Overall everything is growing but I wish it was doing better. The tomatoes are having a hard time. I have gotten a few tomatoes but many of them are still green and I had to trim a lot of brown of the bushes. I honestly think it is because of the cooler the weather we were having. I'm hoping that since it is getting hotter the plants will produce some more.

David in action chasing the lawn mower.

I honestly have no clue why he has a scowl on his face. He honestly liked mowing the lawn. (Notice my pretty flowers in the background)

Another action photo of David chasing the lawn mower. FYI that is apple tree and a grape bush in the background.

Taking a rest from all of the chasing.


Mattie hanging out with mom.

Bathtime Bubbles

David loves bath time and he really likes bubbles to the point that he will eat them. I was finally able to catch a few pictures of David playing with the bubbles.

Fishing Trip

Dan, Michael and Grandpa Hurd (Dan's dad) all went on a fishing trip a few weeks ago (May 7 to be exact) at Canyon Lake. They did not catch any fish but Michael did catch a bush, which he thought was pretty funny.

Mattie's Third Birthday

Yesterday (Monday) was Mattie's third birthday. Dan and I blew up balloons and put them in her room. She did not see them until I went in to get her from the crib. She peeked through the slats in the crib and made her excited face. The kids are having a blast playing with all of the balloons. At pre-school Mattie brought Chocolate Chip Cookies to share with her class and the teacher made her a Happy Birthday Crown. After Michael's T-ball game we came home for a Spaghetti dinner and then cake, ice cream and presents. Mattie and David were so tired from the long and day and neither one napped. So the birthday celebration went pretty fast. For her birthday she got a wooden rocking chair and a cradle and changing table for her baby dolls.





It is hard to tell but they are dancing in this picture. David and Mattie's version of dancing is moving your arms around. Every once in a while you can get David to stand and he will rock back and forth.





I want to take the time to write a little bit about Mattie. Her favorite word is that. She can also say cat,dad,mama, want that, bye, hi, and done. She can also sign, more, please, drink, eat, baby, night-night, hi, bye,no and all done. She is still learning to walk and about a month ago she got a walker and that has really helped her. Mattie is very friendly and loving and waves hi every where we go. If we are at a stop light she will wave to the car next to us. She also stands at the TV and waves to the people on TV. On Tuesdays we go into town for her therapy session and when she walks into the waiting room she stops and waves at everyone before she walks over to me. Mattie loves music and dancing. She recently learned "patty cake" and through out the day she will start doing it on her. Mattie loves her brothers. She thinks the world of Michael and is always laughing at him and of course the times that she will scream at him. She also loves "baby" David and together we call them "frick and frat". They are pretty much always together and they both know how to cause problems and messes like you would not believe. There are many times I hang my head in disbelief. There is never a dull moment with Mattie. She is so precious and over the 3 years has over come many things. Mattie is tough, strong, and never gives up. Oh I should mention that Mattie absolutely hates her hair combed.

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Saturday Mattie had a birthday party with family and friends. Dan and I did not take any pictures except when we sang Happy Birthday to her. There is also a picture of David with a bottle of Coke. He quickly figured out how to drink soda out of glass bottle and we had a heck of a time getting it from him.

Can you believe

That today I turn the big number 3!

My little secret

THIS

PLUS ANOTHER BOOK

AND THIS SWEET LITTLE TREAT


EQUALS PURE RELAXATION AND WHAT KEEPS ME SANE!