Walking in Faith

"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, “This is the way; walk in it.” Isaiah 30:21

"So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:18

Where do I begin...the last 48 hours have been overwelming.

We met with the pulmonologist, who I love...he was Lucy's (our 4 year old) doctor when she was so very sick at 3 weeks old and he remembered us. He is the first one to come along and really take Mary Graham's case to heart and see a bigger picture. We are very thankful for him!

Mary Graham is having some respiratory distress from her scoliosis. Although it is not severe to need interaction yet, she is having to work harder to breathe than a normal baby at her age. This will be very important to monitor as her curve progresses.

After examining her and discussing the possibilities of fusion of the vertebrae or a VEPTR (rib expander) surgery, he did not think fusion was a good idea, at all, for MG. The fusion would be of at least 5 vertebrae, and her lungs would not be able to continue to grow properly and her growth would be severely altered.
So, he confirmed our decision to seek the opinion of the doctors in Philadephia and said he believes that the VEPTR may be in her future. It is not an easy fix, it comes with many complications. You can read more about the VEPTR by clicking here.

The pulmonologist was also concerned with the rigidity of her spine, neck and hips and has referred us to seek the opinion of a neurologist. Since we have yet to get some kind of diagnosis, he wants to explore more conditions, such as a neuromuscular condition. We will see the neurologist on January 6th.

Our pulmonologist also contacted our genetics doctor. I have been avoiding this. He is so willing to find answers for us! Like I said, he is a blessing, and we are so thankful that he will continue to be compassionate about helping us treat Mary Graham as she grows.

The chromosome study they did on Mary Graham had been lost (big surprise), although they were able to locate it. It showed that there is one small mutated gene on a chromosome. What does this mean? She isn't sure. It could mean something or it could mean nothing. Lee and I will go for blood testing to see if we contain the same genetic mutation and they will look further into if it correlates with Mary Graham's deformities.

So much to take in and process and so we ask you to please pray for the following things...
Mary Graham's continued growth and development
The genetic testing and findings....for a hopeful diagnosis
Our travelling to Philidephia and the appointments there
Upcoming hip surgery on Dec. 8th and the neurology appointment
Continued wisdom and dicernment for our doctors and for us
For complete trust in God that he is in control

Listening to God's voice in the midst of all that we are hearing from so many doctors is difficult. My brain can hardly comprehend it all. I have clung to the verses above that God showed me yesterday morning. And it has brought clarity to many questions and confirmation that we feel God is leading us on this path. But how do you walk when you can't see? This is the truly difficult part. It seems so blurry at times, especially on days like these. But if we could see, we would not need to have faith. Although we can't see where we are going, we walk in faith, clinging to the unseen.

We praise God for her progress and using His people to minister to us.  We praise him for walking with us and placing the right people and doctors in our path. We praise him for Mary Graham and the way He created her.

Thank you for loving us and supporting us.....we covet your prayers.