Caroline was born 5 weeks prematurely on August 28, 2002 . She weighed only 4 pounds. She was observed in the NICU for only 24 hours. She was doing well and sent her home. From the time she came home it was obvious that something wasn't quite right. After many, many doctors visits the signs were picked up by our family doctor. At 6 months old we were refered to a pediatric neurologist who within 5 minutes of seeing her diagnosed her with Cerebral Palsy. However, this was later proven to be a misdiagnosis. Caroline continued to develop at her own pace, rolling at 8 months, crawling at 11 months, sitting with minimal support at a year, and by 18 months was walking with a walker. She was talking fine and appeared to be developing normally cognitively as well. That all changed when she had her very first seizure at 2 1/2 years of age - on Valentine's Day. From that point on Caroline has never been the same. With each huge seizure she lost more and more of her abilities and skills. She weathered several life threatening seizure events that required her to be flown by Life Flight to St. Paul Children's Epilepsy Unit. She was diagnosed with Lennox-Gastaut Syndrome over Christmas 2005. This is a rare, severe type of seizure disorder that is characterized by severe difficult to control seizures that slowly rob the child of much of their cognitive abilities. This syndrome usually develops in children who have some other kind of brain abnormality.
In April of 2006, the doctors started to pick up on some things that made them throw the CP diagnosis out the window- Caroline's brain was beginning to atrophy (shrink) and she had dangerously high levels of ammonia in her blood. Initial testing did not reveal any causes and it wasn't until after Caroline went into a huge metabolic crisis after a botched tonsillectomy/adnoidectomy in Feb 2007 that she was sent by Life Flight to Mayo Clinic. There further testing was done and it was discovered that Caroline has a Leukodystrophy- a disease that causes the white matter of the brain to disappear. There are 34 different types of Leukodystrophy and it is believed that Caroline has Vanishing White Matter Disease. Either that or she has a new form of LD that has yet to be described. The gene test for th VWMD will take up to 2 years to get back and still may not confirm the disease. They also discovered that the high ammonia levels in her blood are a result of a metabolic disorder, most likely a form of Urea Cycle Disorder, but again she does not test perfectly for the various forms of UCD.
Because both of the diseases are rare genetic diseases, the doctors think that it is highly unlikely that she would have the misfortune to have two of them. Therefore they think that Caroline most likely has some new form of Leukodystrophy that has a metabolic component involved with it. They are watching and documenting the progression of this disease in the hopes of identifying it at some point in time. This disease is neurodegenerative, and Caroline continues to have uncontrolled seizures and to lose much of her skills and abilities. We have been told we only have a few years left with her. Our strong faith in God is carrying us through this trial and we pray for the best quality of life for Caroline while she is here with us.
Caroline lives in West Fargo, ND with her Mom and Dad, Abigail and Tyler, and her big brothers Andrew and Benjamin, and her little sister Danielle.
Happy birthday, C! 10 years old already! Wow. I can hardly believe that she would be 10. I wonder what she would look like. What would she be like? Would she still love ducks? Would her favorite color still be blue? If she would be anything like her sister it would be changing daily! Caroline's friends are all in the 5th grade now, their last year in elementary school. It's hard to believe that they are all getting so big.
We celebrated today with KFC, with extra mashed potatoes and gravy! I made her favorite cake and we sang to her. I saw plenty of ducks everywhere and I got a few books to donate, as well. I wish that I could say that I was able to get through the day without tears, but I don't know if that will ever happen on her special days. I'm not worried about that, though. Sometimes when I talk about her I tear up, and people always feel bad for making me cry. But I always say that it is okay. I cry because she was so special and I miss her and love her. That will never go away. My tears are just proof of that.
We are doing well. We moved into our new home a little over a week ago and it is a beautiful house that we are very proud to be able to call home. The kids just started back to school. Andrew is in 9th grade now. I can't believe that he is in high school. He is taller than me now, and as always is such a great help around the house. He was such an asset as we were moving - I don't know what we would have done without him. I know that Tyler sure appreciates having and extra pair of hands around that is capable of helping. Ben is in 7th grade, and although he won't admit it, I know that he was was excited to get back to school and see his friends. He's been a great help too, and he is growing into such a great young man. And Danielle is in the 2nd grade now. She is still as spunky as ever and keeps us on our toes! She is busy with Girl Scouts and gymnastics, and is healthy as can be.
Tyler and I are super busy unpacking and getting settled into the new house. Oh, yeah, and working, too!
That's all for now. I hope to have more to update with soon. Lots of love and blessings to you all!