Tuesday, Feb. 10, 2016 - 10th Anniversary of Brittany's diagnosis. On February 10, 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 speak, walk, dress, or feed yourself. This is what Brittany faces every day. In the past nine 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 by mouth declined and by in December of the same year she had a feeding tube. In November 2007, Brittany underwent brain surgery (Deep Brain Stimulation). We have always known how amazing she is, but she 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. 2008 to 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 playing games and some vacation time. September 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 its 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 she had many breathing issues. She spent quite a bit of time in the hospital from Sept. 2009 to January of 2010. Jan. 2010 to Dec. 2010- At this point we felt that we could start managing Brittany's care at home without going in and out of the hospital. With the help of a few powerful prescriptions, oxygen and some added medical equipment, we managed ok for a few months. By the end of 2010 Brittany's breathing continued to get worse.
Jan. 2011 Dec. 2011- We spoke with doctors and friends about a trach to help Brittany breath better. It was a long process to make that decision and in Feb. 2011 she underwent trach surgery. After being in the hospital for a month, a new "normal" began. Aside from the changes we experienced with the trach, we also made some changes to her home care. We began to have private duty nursing. Rich and I wanted to go back to being dad and mom and not just nurse/doctor. Brittany was hospitalized 2 more times and had 2 surgeries that year. In May, 3 salivary glands were cut to try and help minimize the risk of aspiration and choking. In July, she underwent emergency surgery because air was found in the lining of her bowels and doctors were not sure if she had a perforation. Luckily, there was no perforation. While in surgery they also found a fracture in her right pelvic area. Not much we could do about that, but give it time to heal.
While the first half of the 2011 was a bit stressful with too many hospitalizations, the second half of the year was completely the opposite. Brittany was feeling well enough to enjoy a couple of trips. We took her to NY in Oct., then Portland, OR and San Francisco in Nov. The trip to Portland marked the first time she flew in an airplane since the trach. A little, no, a lot of extra planning, having medical supplies delivered to the hotel and the trip was a success. Brittany celebrated the end of 2011 in good form.
Jan. 2012 - Dec. 2012 - February Brittany was back in the hospital to have more salivary glands cut. Brittany was still having issues producing too much saliva. She would constantly choke, have trouble breathing and would go into mini dystonic storms. By May, Brittany was a bit more stable. In June we drove to Canada to speak with ApoPharm, a pharmaceutical company, about NBIA and celebrated Brittany's 17th Birthday. She also enjoyed a spa day at home with some friends. In Oct., Brittany had surgery to replace her DBS batteries. Less than 48 hours after her surgery we were off on vacation. We went to Orlando and enjoyed some time at Sea World and Epcot. It was one of the best vacations Brittany has had. By Dec. Brittany's symptoms started progressing. We had some nursing challenges and I believe she did not respond well to them. Anytime there is a major stress or change in her normal routine, Brittany does not respond well. It took a few months to get her back to her, new "normal".
Jan. 2013 -Dec. 2013- Minor progression of symptoms, which is to be expected but NO Hospitalizations, YEA!!! Brittany's scoliosis has continued to get worse and is the one area that caused her some discomfort. Unfortunately, there is not much we can do about it except make constant adjustments to her chair to help keep her comfortable. Other than that, not a bad year. Brittany was able to go to San Antonio to attend the NBIA Conference and return to Orlando for another visit to Disney World and Sea World. She also got her official Virginia ID and celebrated her 18th birthday in style. On her birthday she wanted to donate her hair to Locks of Love (third time). She received a mini make over complete with a short sassy cut, a pink extension, eyebrow threading, manicure and pedicure and shopping. She was very excited. We celebrated the end of the year and started 2014 in Myrtle Beach. Not a bad year at all. How can we complain?
Jan. 2014- Dec 2014 – The first 8 years despite of all that Brittany had been through, were filled with fun and happy moments, for the most part. This ninth year has not been as fun and happy. She celebrated her 19th birthday in the hospital.The hospital staff was very nice and made it special by giving her balloons, cards and gifts.Her disposition has not been as positive.While she still communicates with “BSL” (Brittany sign language), her muscles have become weaker, so she is slower to respond. This has made it more difficult to figure out what she wants and needs.Her wheelchair was a source of great fun early on, now it is one of the only 2 places she is somewhat comfortable.While not crazy about the feeding tube, for a while she was still able to enjoy small amounts of ice cream but is no longer able to take anything by mouth. Towards the end of the year Brittany had some issues with a new mouth guard and her Dystonia increased, which is very painful for her.Most of the year we have had to give Brittany extra “happy Juice” to try and keep her somewhat comfortable and as pain free as possible, which means that she out of it or sleeps more during the day than she used to.While it is nice to see her comfortable, she has not been able to enjoy the things she used to do, like play games, watch her favorite shows and have books read to her.
I don’t like this much negativity, but I have to be realistic and tell it like it is.To end the year on a good note, we did get to go to Dallas to visit family.On the way home, we stopped in Nashville, and celebrated New Years at Gaylord Opryland Resort.While she was a bit medicated Brittany was able to stay awake till midnight and ring in the New Year.Let’s see what 2015 brings.We will take it day by day and make each day the best it can be.
Jan 2015- Dec. 2015 - The beginning of 2015 was still a bit rough and we had to continue to keep Brittany medicated. Around April, after a new mouth guard and new medication, things started getting better and we were able to start weaning Brittany off the sedatives. We also had couple of nursing issues that made Brittany a bit stressed and uncomfortable.
On June 25th, the Piedmont Charitable Foundation (PCF) held a golf event. NBIA was one of the recipients of the funds raised. It also happened to be Brittany's 20th birthday. The players that attended the event helped us celebrate, as well as Brittany's grand parents (Sandy's parents) that were visiting from Texas.
In July we were able to get a great nurse. Brittany really likes her and so do we. I saw a big difference in Brittany's demeanor. In August, Brit had her DBS battery replaced for the second time. since the initial surgery in 2007. All went well, no issues. The new battery is rechargeable so hopefully it will last a bit longer than the last two.
In November, we went on vacation. We asked Brittany where she wanted to go, guess where? Disney World and Sea World : ) We had a great time! My sister in law as well as the nurse Brittany likes joined us. The year ended on a good note. Let's see what next year brings as Brittany turns 21!
Brittany's life continues to be challenging and her symptoms constantly changing. We still feel extremely blessed. We are forever grateful for family and friends that continue to support us and our efforts to raise awareness and funds for research.