Beautiful Life

Hey child up and go; A big world is out there waiting for us to live in every day. Outside you will find, there is love all around you; Takes you, makes you wanna' say; That it's a beautiful life and it's a beautiful world and it's a beautiful time to be here, to be here, to be here. -Fisher

Monday, June 16, 2008

Here we go!

We knew when we adopted Claire that her extensive medical needs would mean a frenzy of activity, especially at the beginning. Now that we have our first month behind us we are embarking on the next part of the journey for Claire.

As most of you know, Claire was born with spina bifida and club feet. The next few months will be spent accessing these defects and deciding what can be done to help her overcome them. We began today with an MRI to determine if she has any level of hydrocephalus. Hydrocephalus is sometimes called "water on the brain". It is a condition that occurs when cerebrospinal fluid builds up in the cavities of the brain. Cerebrospinal fluid is continuously circulating around the brain and the spinal cord and is drained into the circulatory system. When a blockage of the drainage occurs, the pressure inside the skull can damage the brain. Claire is at risk for this because she was born with spina bifida and 90% of people with spina bifida, also have some degree of hydrocephalus. The doctors in China did not diagnosis Claire with this condition, however, they also did not CT her head. Therefore, we felt it prudent to address the possibility as soon as possible to give her the best chance at a recovery if any damage has been done.

Getting ready for the MRI

Wednesday, Claire will have an appointment with the International Adoption Clinic for a comprehensive exam and developmental evaluation. This appointment will help us determine what services and therapies she might benefit from. They will also do blood tests to find out what Claire is already immune to so we will know which of the vaccines she has already had succeeded and which vaccines she needs to have now!

On Thursday we will head to see the neurosurgeon. He will have had time to get the results of Claire's MRI and will be ready to let us know his diagnosis. If she does have hydrocephalus, it is our understanding that she will be scheduled for placement of a shunt. A shunt is a device that will pump the excess fluid out of her brain cavities and into her abdomen. Obviously, we are hopeful that Claire will not need this procedure and just happens to be in the small 10% of people that do not have hydrocephalus. However, having a shunt is a pretty minor thing. Children all over the country have them and go about their daily activities like any other child.

Well, this is just the beginning! From our Adoption Clinic appointment we will get a referal for the Spina Bifida Clinic. At the Spina Bifida Clinic we will get to see more developmental specialists, an orthopedist, a urologist and a neurologist.

Buckle up! This is going to be one busy summer! Please know that all the prayer coverage and support has been felt and appreciated. We would love it if all our family and friends would continue to keep Claire in their thoughts and prayers everyday. She is still adjusting to us, and now we have to subject her to poking and prodding! We are doing only what we feel is best for her and our prayers are that we will have the wisdom to know which doctors, which procedures, which therapies will benefit her most! We are truly amazed by her spirit and her abilities every single day and we know that with the right care she will be unstoppable!

Jesus looked at them and said, "With man this is impossible, but with God all things are possible." ~Matthew 19:26

1 comment:

Pam said...

We'll be praying for you. We are adopting a boy from China with spina- bifida, so we have been following your story. Come visit my blog too :)