Kalyn's story

My life was blessed nearly 11 years ago when Kalyn came into it. She was everything a mother could ask for in a daughter. Kalyn has continued to light up my life and that of her father Jeff. She is our beautiful little girl and we are so thankful to have her in our lives.

Kalyn has faced many challenges and hurdles throughout her life beginning at birth. She was born with Down Syndrome and was in respiratory distress. Kalyn was in the NICU at Norfolk General for 2 weeks at birth but managed to come through. At the tender age of 21 months she had her first neurosurgery to correct her spinal stenosis by removing the back of her first and second vertebrae to relieve the pressure on her spinal cord. The surgery was a success and Kalyn was home within a week. At the age of 4, Kalyn began to have stiffness and swelling in her joints that was determined to be Juvenile Rheumatoid Arthritis. She has fought this disease with great valor-along with the help of her wonderful rheumatologist Dr. Gabriel. Kalyn has had ups and downs with her arthritis but has faced each and every day with a smile no matter what!

Kalyn was to have dental surgery this March. Prior to surgery she developed and infection that caused us to visit the dentist prior to surgery. It was by chance that they did the xrays in office (which were initially to be done during the surgery). These xrays showed an abnormality in her bone which prompted a CT scan prior to surgery. In the last few images of the scan of the face the radiologist noticed an abnormality on her spine. That was it-dental surgery was cancelled until a neurosurgeon could clear her.

When Kalyn's neurosurgeon reviewed the films he was very concerned and scheduled more scans of her neck. This led us to where we are today. Those scans showed that Kalyn has a complication seen in only a small percentage of sufferers of rheumatoid arthritis-loosening of the lateral ligaments in the cervical spine that leads to settling of the skull onto the spinal column. What this means is Kalyn's spine is going through itself and into her skull putting pressure on her brain stem. OUCH! We had never noticed the subtle symptoms-or attributed them to her other conditions. The only solution is a surgical repair that should be done soon.

We now have a MRI on next Tuesday, April 20. Within a week or two Kalyn will enter the hospital and be placed in a halo for 5-7 days in spinal traction. This is to pull her spine back down out of her brain stem. Then, if this is successful, they will fuse her cervical vertebrae to one another and also to her skull. Afterwards, Kalyn will be in a halo for a minimum of 3 months while her spine heals and calcifies. Kalyn smiles at everything that she goes through and even manages to interact with the doctors until they are chuckling with delight at her actions. She is so strong- I envy her.

We have a long road ahead of us. There is no doubt about that. But the outpouring of prayers and support from our friends and family has been wonderfully overwhelming. I am so thankful for everyone who has offered assistance or just prayers or even just a hug. We, as a family, will need all of the help we can get. Jeff is in San Diego on business until May 12th-unless surgery is before then. So we are facing this together via Skype and cell phones. (I can't wait for him to come home)

Let me not forget to mention that Kalyn has a soon-to-be 6 year old little sister named Alexis. They are the best of friends. Alexis is very helpful with her sister and attempts to protect her whenever she can. Tonight I sat Alexis down and explained what we were in store for. It is amazing at how accepting children are. She took the news very well and was very inquisitive about the halo device and how much hair Kalyn would have to have shaved. (amazing what kids focus on ) We are preparing as a family to face this challenge. And I am confident that we will come through with it having made us stronger both individually and as a family unit.

Thank you again to all of our friends and family and know that we appreciate all that you do. I hope that through this blog we will be able to not only keep all concerned about Kalyn informed but to also remember just how far we have come as well as all that we have both gained and overcome.

-Kristi