Friday, January 28, 2011

Vein of Galen Malformation

     Well, after a long awaited few weeks we have meet with the Pediatric Neurosurgeon at MUSC and found out that Gracie has something called "Vein of Galen Malformation" located in her brain. If you have any medical background you will know that it is a type of arteriovenous malformation or AVM. AVM's are very common and seen all the time. So after meeting with the Neurosurgeon he reviewed and read all of Gracie's MRI results and explained everything to us and in turn recommended us talk to a different Neurosurgeon who specializes in endovascular procedures. This new neurosurgeon informed us that VOGM is very rare and he has only seen it about 10 times. He also told us that he is very surprised that Gracie has not had any other side effects other then her very noticeable facial veins. He said that the most common side effects of  VOGM is congestive heart failure, hydrocephalus, and developmental delays. He also said that Gracie will be the oldest patient he has ever treated. You typically see this in babies who are only days old or weeks old because their in heart failure.
       After hearing this Tommy and I had this overwhelming feeling that God has had His hand on Gracie since the day she was born. The fact that our precious baby girl has this malformation and hasn't had any of those side effects is truly because of the Lord. So from here we have scheduled Gracie to get an Angiogram which is a test where they place a small catheter in her leg and travel through a vein to her brain and inject contrast dye and watch for the flow of the blood and at what pressure it is traveling. We are praying that during this test the doctors find the malformation in one confined area and are able to block off the blood flow.  Thank you so much for all of your prayers, phone calls, emails and text messages it has meant the world to Tommy and I.


k8 said...

We are praying for your precious family.
Love, Kate and Stu

jessie said...

we are praying for your guys
Jessie and Cory

Anonymous said...

We are praying for Gracie.
The Farmers

Rebekah said...

What a blessed child of God. She is so precious and I will be praying that any procedure she has to go through will be a smooth process for her. She is so blessed to have such wonderful parents who puts the Lord first and have reaped the benefits of that. God Bless your sweet family!

Bethany Clawson said...

Jeremiah 29:11....For I know the plans I have for you, plans to prosper you, NOT to harm you,to give you hope and a FUTURE! We love you guys. We are praying!
The Clawsons