Decisions

The last 3 weeks have been a somewhat of a blur. Phone calls, doctor appointments, and lots of research on the Internet. We have no idea what time it is or even what day it is! We have had lots of comfort, love and care from family and friends and we are so grateful for them all and all they do for us! We would not be able to get through this without them.

If any of you are like us we had heard of Spina Bififa but didn't really know much about it. There are 3 different types of Spina Bifida which are:

-Spina bifida occulta is the mildest and most common form of spina bifida. In spina bifida occulta, one or more vertebrae are malformed. The name occulta means "hidden" and indicates that a layer of skin covers the malformation, or opening in the spine. This type of spina bifida rarely causes disability or symptoms.

 

-Spina Bififda Meningocele-In meningocele, the meninges protrude from the spinal opening and the malformation may or may not be covered by a layer of skin. Some patients with meningocele may have few or no symptoms, while others may experience symptoms similar to those of closed neural tube defects.

 

- Spina Bifida Myelomeningocele is the most severe spina bifida type. It occurs when the spinal cord is exposed through an opening in the spine, resulting in partial or complete paralysis of the parts of the body that are below the spinal opening. The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction. (this is what Ally has along with Arnold–Chiari malformation which is A congenital anomaly in which the cerebellum and medulla oblongata protrude down into the cervical spinal canal through the foramen magnum; it is almost always associated with meningomyelocele, spina bifida and hydrocephalus.

 

There are also different stages of Arnold-Chiari, but we are not sure which stage she is at. We know that from our last appointment it was not bad but it can get worse or better.

 

Now that you know what it is you should also know there are other kids out there that have the same type of Spina Bifida as Ally, and they can walk, run, talk, play sports, read, write, just about everything that you and I can do. It might have taken them a little longer to learn to do this, but this just gives us hope that we can beat the odds.

 

We have a very big decision coming up in less than 3 weeks. We have two options for little Miss Ally and our family. 1- We can wait and go through our pregnancy normal and have her at the U of U which she will then be taken to Primary's for surgery. Or option 2 we fly to San Francisco and have Fetal surgery which is the same surgery after she is born but a whole lot earlier and inside the womb. This surgery has to be done before your 26th week of pregnancy. I am already 22 weeks. so not much time.  A little info on the fetal surgery- it is done in San Fran, it is very risky, if we have the surgery i will stay in San Fran until Dec 29th and if i am lucky i will be able to come back, but not home, i will have to live somewhere in SLC near U of U and be on bed rest until the baby is born, roughly 10 weeks, the surgery can reverse some of the damage done to Ally or it can make it worse!

 

Right now we are not really sure what we should do. I know to some it would be an easy decision but when you are actually in our shoes and learning all the details it makes for a very hard decision. We want what is best for Ally and our family as well. So for now the plan is to fly so San Fran on Dec 3rd and get an 3 day evaluation and learn every detail about Ally's condition, then on the last day we will decide what we should do. And with Heavenly Father's help we know he will lead us to the right decision. 

Trust in the Lord with all thine heart; and lean not unto thine own understanding. . In all thy ways acknowledge Him, and He shall direct thy paths. (Proverbs 3:5-6)