In February of 2006, after years of doctor visits and tests, Brittany was diagnosed with Neurodegeneration with Brain Iron Accumulation (NBIA).Imagine for one moment waking up and not being able to dress yourself, feed yourself or speak.This is what Brittany faces everyday. In the past five years Brittany has experienced many changes in her life.Shortly after her diagnosis, Brittany lost the ability to perform a number of functions.In June of 2006, her speech was gone completely.By the end of October 2006, walking was a thing of the past.In November, her ability to take food orally declined and we had to insert a feeding tube in early December 2006. Through all of this, Brittany maintained an amazing attitude.She quickly adapted to using a communication device, as well as a modified sign language. At this point she communicates with modified sign language.She thinks riding in a wheelchair is great fun; and while not crazy about the feeding tube, for a while she was still able to enjoy small amounts of ice cream, but in the past year she is no longer able to take anything by mouth. In November 2007, Brittany underwent brain surgery (Deep Brain Stimulation).We have always known how amazing she is, but she really proved it on November 8th, when the 1st part of the surgery was done while she was awake.The benefits have been limited, but it does still allow her some movement of her hands and arms.All we want is for Brittany to continue to have ?JOY? in her life.Opening her eyes, the use of her left or right hand so that she can continue playing endless games of UNO, and the relaxation of her right shoulder so that her battery does not bruise her, are what will continue to make her happy.Of course, a cure wouldn't hurt.
From 2008 till the fall of 2009 Brittany was able to have some respite from the progression of her symptoms. A few minor glitches, but for the most part she was able to enjoy her usual things again, like playing games.
From Sept. of 2009 to the end of 2010, Brittany had a huge growth spurt. She went from wearing size 7-8 to 12-14 and some 16's. While it was great to see her grow and shop for new clothes every other month, it did come with it's challenges. With all that was going on with her little body, well not so little anymore, her symptoms progressed. Her dystonia increased, her biting got worse and had many breathing issues. She spent quite a bit of time in the hospital from Sept. 2009 to January of 2010. At that point we felt that we could start managing her care at home again without going in and out of the hospital. With the help of a few powerful prescriptions we managed ok. By the end of 2010 Brittany's breathing continued to get worse. We had been researching and speaking with dr.'s and friends about a trach to help her breath better. It was a long process to get to that decision and in Feb. 2011 she underwent trach surgery. I am in the hospital writing this update as she recovers. So far, so good. The real test will be when we get home. A new "normal" will begin. Aside from the changes we will experience with the trach, we will also make some changes to her home care. We will begin to have private duty nursing. Rich and I want to go back to being dad and mom and not just nurse or doctor. While we will still care for Brittany, we will depend on the help of skilled nursing to help as things continue to progress. Brittany's life continues to be challenging and her symptoms constantly changing. Never a dull moment. We still feel extremely grateful for our many blessings, some of which include the peace and courage that Brittany has.We have also been blessed with many old and new friends who have brought us joy and support. Wherever this takes us and for however long, we know it is not in vein and we will be better people for having the opportunity to have been chosen as her parents.
To continue getting updates on Brittany's progress, click on the "queens update" at top.
