Posts Tagged ‘Niemann-Pick Type C Disease’
When me and Jennifer first started dating, she took me to a place her family had been going to for quite some time. The restaurant is a Chinese place called Hunan Gardens in Liberty, Missouri. Frankly, it was the first time that I was pleased to eat that kind of food. Before I had no real interest in eating anything other than “meat & potatoes”.
The owner's and staff were always so friendly. They shared with us the times we would visit including the births of Brisan & Parker. Over the years since we've moved about 35 minutes away, we've not been very much at all although we always say it is our favorite “chinese restaurant”.
Brisan and Parker over the years and shortly after Duncan was born, they loved to chow down on crab rangoons and veggies! Brisan when he was still speaking called them “cacoons”. Parker just hoovered his way through carrots and peas!
Since their diagnosis back in August of 2008, we have been coming less and less. Mainly due to the coordination and all the extra effort it is to pack up wheelchairs and the whole “semi like” approach to going anywhere anymore. We had dropped little Duncan off at grandma's and papa's house so he could have some quality time with them. Afterwards we stopped by because it was close.
That was the first time in probably 2-3 years we had been their with Brisan & Parker. Check out the video below on how they are trying to eat some of their old favorites. Due to Niemann-Pick Type C disease, the affects of it all as you can see are weighing in as they struggle to hold and complete the normal functions of eating that so many of us by default take for granted.
Aren't they so cute? Just want to squeeze em'!
The Doctors TV Show
Recently this week Kristen and Fernando Lopez attended a taping of the hit TV show's Season 4 premier called “The Doctor's”. There son Gavin has Niemann-Pick Type C disease like Brisan and Parker. We consider them good friends and are so very excited they were able to nab this opportunity. This was an awesome opportunity for our disease community to help spread awareness about this rare disease and hopefully attract the right people that help change the course of this. Below are a few videos from the show.
The last few weeks we have been searching for a full time registered nurse for Brisan and Parker. A long story short we decided to do away with our health aide and with that meant we had to find a new agency if we wanted to go with skilled nursing. Currently the agency that is assisting us has stated they have had trouble finding a person that would be willing to work the 1-9pm shift Monday through Friday. Read the rest of this entry »
No news is good news? I guess that can have a meaning in several different ways. 🙂 Hoping we receive good news this month on a very special opportunity. It wouldn't be about the Stults family but a very rare chance to affect a lot of lives.
We want to thank everyone for their continued support of our family. Brisan and Parker have been doing OK. No hospital visits since the last update in which Brisan was in for a staph infection. It appears he is getting all suited up for recovery since that time. They both have had a few projectile vomits after their feeds but nothing super concerning. We also have a new neurologist & pediatrician. We needed a new neuro that could help us manage this disease. Our pediatrician was a very incredible woman along with her staff but we honestly needed that doctor to be at Children's Mercy Hospital along with our doctors. Tough decision and I hope that no feelings were hurt doing the transition. 🙁
Duncan is just the silliest little boy ever. We really need to get him involved in some type of preschool so he can interact more with little ones to develop socially. Unfortunately Brisan and Parker are not the best peer models :(.
Jennifer has been baking for a few friends here and there ( Stults' Sweets) and any money that she makes she will donate 20% to the Niemann-Pick Children's Fund which is our 501(c)3 we organized at the end of 2008. If you haven't already been to our page on Facebook please visit and “like” at www.Facebook.com/NPCFund. Our goal this year is to go over 1,000 “likes”. More importantly I hope we can generate awareness for Niemann-Pick Type C disease and rare disease in general. You can also find us on twitter at www.twitter.com/NPCFund.
On Monday Brisan was having troubles with his seizures and his right eye started to look funky again. I think we might buy him an eye patch so he can be a full time pirate if need be. Here are a couple videos we took last night. One of Duncan being silly and a complete cheese ball saying his name, trying to count, and how he has his underwear on backwards.
Also have Brisan getting his treatment done on his G-Tube site. He has a fungus around it and the skin is pretty broken down around the area. You will see we have him in a “onesie” that we cut a hole above his G-Tube. The onesie is so he won't “play” with his diaper as much but it totally gets in the way of doing his feeds/ medicine. This is the new regiment minus the cleansing wash we have to do recommended yesterday by the doctor. Interesting enough Medicaid paid for most of the supplies but something little that typically would be covered they did not. This is messed up with no private insurance…well at least affordable health insurance. We know the future will be better at some point with this issue but we have to “move along” as needed.