Amazing Progress & Amazing Opportunities...

Happy (very belated) Halloween from our garden crew.
One happy gardener, a sweet little flower and 3 garden gnomes.
And the Kirk as the president (not pictured).

We are so BLESSED!

AMAZING PROGRESS...

I can hardly believe how quickly the fall months have gone. This week Kennedy started her fourth session at the Conductive Learning Center (CLC). The mission of the CLC is to teach students how to control ones own body so that one can live more interdependently. We are seeing and experiencing this mission statement in action.

Kennedy's progress thus far includes...

• Before unable to sit on the floor.
• Now able to sit criss-cross on the floor for short periods of time. We are working to increase this amount of time.

Kohen reading to Kennedy. She loves to be read to.

• Continued progress on...

• rolling over.
• playing on her belly.
• enjoying more and a wider variety of foods.
• self feeding. Mainly increase control with utensils.
• more steps using her pacer (walker).
• increased vocabulary and pronunciation. Regularly using her good manners with please, thank you, and all done.

 AMAZING OPPORTUNITIES...

Last year in January we were surprised to find out that we were expecting a baby. This news brought a wave of emotions including excitement, hesitation, and fear. Our experience with Kennedy's birth was horrible and traumatic. We did not want to ever go through an experience like that ever again.

Trusting that God had/has a plan for us, I sought out advice to find an excellent doctor. After an extensive conversation with a local nurse friend, Sarah Northouse, she made a recommendation. God used her word to lead us to his provision. I called and scheduled an appointment with Dr. Ruth Brandt at Grand Rapids Women's Health.

During my first visit with Dr. Brandt, I explained our experience with Kennedy and her diagnosis of Cerebral Palsy. We discussed preventative measures and she asked if I had heard of Dr. Joanne Kurtzberg at Duke University. She went on to tell me that Duke University is doing clinical research trials using stem cell from umbilical cord bloods to treat pediatric patients with cerebral palsy. And that there was a possibility that the baby and Kennedy could be a match. I was stunned. How had I not been told this by any of Kennedy's specialists? What would treatment look like? What are the risks? Possible rewards? Could we get into a study? What were the next steps? The questions flooded into my mind. Dr. Brandt did an awesome job of explaining and answering as much as she could. Then she wrote down some names and places to look into. I made it to my car before I burst into tears. Not in a million years did I think having another baby could help Kennedy.

Kahler James Kingsley

I'll share baby K's birth story another time so many miracles here too. Short version... Kahler came a month early via emergency c-section. Dr. Rodman Taber delivered him at Spectrum Butterworth downtown Grand Rapids. Him and his team did an amazing job and we received excellent care. Many prayers were answered.

As a result of the amazing team at Butterworth and their excellent work, we were able to harvest Kahler's cord blood and have it sent to the Carolina Cord Blood Bank where it would be preserved, and stored and hopefully used to treat Kennedy.

The next step that followed was having HLA (genetic) testing (this link is a cool video that explains how HLA testing works) done to see if Kennedy and Kahler were a match. Duke university sent a kit to our home and Kirk and I got to complete 4 cheek swabs that would determine if they were a match. I read through the directions 4 times just to make sure, we were doing it right. This shows you how little we know about medicine. Too funny.

The results came in this past Wednesday. Kennedy and Kahler are a match. Kirk and I were overwhelmed with this great news. PRAISE GOD for his provision and his goodness.

SO NOW WHAT...

We have faxed over a release for treatment. And we are in the process of sending all of Kennedy's medical records over to Duke. Once they have reviewed her files, we will schedule a treatment date. We hope for Kennedy to receive the treatment in either February or March. Please continue to pray that this treatment would work and that Kennedy will experience tremendous progress. One step at a time...