More Consultations

First of all, thanks to everyone for your support and prayers again. The outpouring of love and understanding has been remarkable.

Kalyn is doing great. you would never guess that anything is wrong!! We go on Monday May 3rd for a consultation with a 3rd dentist. This one is Neal Morrison. He is in Norfolk and will be hopefully be able to perform the dental surgery while Kalyn is under anesthesia having the halo implanted. This is great news because it means one less time under anesthesia and no delays in the neuro procedure.

We also have an appointment with Dr. Shaffrey at UVA on May 10th. They were very helpful with fitting us in so soon. But I must admit that I do not look forward to the drive. Jeff and I are thankful that UVA makes great neurosurgeons--even if they don't make great football players ;). May 7th we go to CHKD for allergy testing to make sure that Kalyn is not allergic to penicillins. This will allow for a greater spectrum of antibiotics that are very effective to be used following the dental procedure. Cross your fingers that the results are in our favor.

For now it is just a waiting game. A very busy waiting game-but a waiting game all the same. 13 more days until Jeff comes home from San Diego. Not a day too soon. Keep us in your prayers and we will continue to thank God for blessing us with such wonderful and supportive friends and families.

MRI Update

MRI was yesterday...Kalyn has been such a chronic patient that the hospital is like a second home for her. But yesterday was different. For the first time, I saw fear in her eyes when they were taking her for the MRI. That was when I realized that Jeff and I should take more time to better prepare her for what is to come. Kalyn has a hard time grasping everything because of her mental delays but normally we can explain things in a way that she will understand. Or at least partly understand. I had done that prior to the MRI-but I think that she has finally reached an age where she needs more of an explanation that we as parents are used to giving her.

Rest assured that I took the time to explain everything yesterday so that her fear would be dissolved. And she did very well. She was wheeled into the MRI room with her chin high and the bravest little expression on her face. God bless that child for getting all of us through this!

Recovery was quicker that usual as she was only given gas to sedate her. But this also made her more coherent. Which led to fear. She asked me to hold her in the PACU. When I picked up all 74 pounds of that child she wrapped her arms around my neck tighter than she ever has and buried her face in my neck and squeezed. It nearly brought tears to my eyes. Thankfully she came around fully in about 20 minutes. All in all the day was a success.

I heard from Dr. Birknes today. He has spoken with Kalyn's dentist who agreed to do as much of her dental work as possible prior to surgery so that her infection risk is considerably reduced. The catch is that he has to keep her neck still. This means that he will not be able to finish the surgery and she will need more surgery later down the road once her spine is stable. Still, this is very good news.

He also spoke with a neurosurgeon at UVA who can do the alternate procedure should her spine not realign with traction. His name is Dr. Shaffrey, rest assured I will be researching him tonight. Dr. Birknes would like for us to meet with Dr. Shaffrey for a second opinion. He suggested that because of the fact that this is a high risk surgery then a second opinion is warranted. Also, this will allow us to feel more comfortable with the surgery because we will know the person who would complete the back-up plan should it become necessary. We should know by Monday when that appointment will be. All of these developments mean that the surgery will be after Jeff is scheduled to get home from San Diego. This is such a blessing and a relief for me--and for Jeff as well.

I will continue to update everyone. Thank you all for your continued support and prayers.

-Kristi

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