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)

 

Ally Ray

     It was a moment in our lives that we never knew would happen and could not imagine it in our wildest dreams.  As we sat in that small room with a High Risk OBGYN performing an ultra-sound on our sweet, 20 week old, baby girl, we knew that we were in a facility where we never wanted to be.  For a week, we had been praying that what our regular doctor saw.... was a mistake.  Unfortunately, we were informed that our Ally Ray had Myelomeningocle (Spina Bifida) and Arnold Chiara Malforamtion.  It was words that make your heart beat faster and up into your throat, words that make you feel nauseated, and words that make your head slowly tilt to the ground and tears to fill your eyes and run down your cheeks. 

     We had heard of these diagnoses before, but didn't have the slightest knowledge of what it meant.  To be honest, it didn't really matter what the doctor said after this, because shock and numbness had entered our bodies.  All we could think about was what Ally's life would be like.  Would she be able to crawl, walk, or feel her legs.  Would she be able to run through the grass on a summer's day, or jump into the leaves as they fall from the trees in the fall.  Our hearts were broken and we wanted to fix the unfixable. 

     After a few days, and minus the outlook on the impact of all our lives, we were comforted by the knowledge that this was our Heavenly Father's plan.  We were chosen to parent this special gift and special spirit.  We were the lucky ones to be able to share our lives with this beautiful girl.  We have an enormous support group that ranges from family and friends, to people that we have never met that are parents to Spina Bifida children whose words of optimism and comfort have brought our souls peace. 

     This is not a time to mourn the unfortunate, but a time to celebrate the fact that Ally Ray has been sent to not only us, but all of you who she will come in contact with.  She will teach us all and bless our lives for have known her. 

    There are still so many unknowns in regards to Ally.  What is known is that we have chosen to continue this pregnancy throughout.  We still have so many questions in regards to this illness and what is to come in our future.  We encourage everyone who has questions, to just ask.  This is not a topic that we are scared of and do not want to discuss.  We have embraced the fact that this is our lives... now and forever.

     We are so grateful for our wonderful families who have given us so much support and love.  We love you and are eternally grateful for you in our lives. 

     -- "For our light and momentary struggles are preparing for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal." -- 2 Corinthians 4:17