Brisan and Parker Stults | Living with Niemann-Pick Type C

Archive for March, 2013

It has been a little bit since we last updated everyone! Our household has been a bit crazy.

Adoption?

We found out on March 8th that we are official in the regards to being licensed foster parents in the State of Missouri. Some of you may have known that last year we started the process of going that route. Our end goal is to adopt a little baby girl considering our genetics aren't quite in our favor. Never been that good at playing poker.

We do understand that some people may not agree with this route and rightfully so but deep down inside when you get that gut feeling it is the right thing to do. We know nothing has been easy.. heck you can look back over our time with our family with Brisan and Parker.

The Boys

February was fast and furious right into March. Poor Mr. Parker has had a very hard time with seizures. They are picking up in frequency and severity. Last week we finally had enough and he was admitted into Children's Mercy Hospital to try to figure this out. A few of his meds were up'd but he'll need some time to adjust. Back in February… he was very sick… very weak. No muscle control… like a big floppy noodle to say the least. We haven't experienced him that way.

Brisan has been the normal “Bubbas”. We started him on the cough assit machine which has been helping him. He still sounds pretty “junkie”. Over all he has been pretty good. A few weeks back, our Wednesday nurse helped him walk into our room and you can see his “eyes” light up. He hasn't been in our room at least a min. of a year. He use to walk/run in here all the time. I had her walk him into our bathroom which was another place he like to go. It brought back a lot of memories and made me very sad because of all his abilities that he has lost. They both are unable to walk on their own. Parker is so much weaker than Brisan. Parker use to be a tank.. solid.

Duncan… well this little crazy 5  year old is something else. Quite the hoot. We've had to take his ipad away a few times . Mainly due to him coming across seemingly ok videos to watch like video games and etc but the language gets a bit fowl. We think we have found a solution for this with iTubeList app. We are thinking of not giving it back anytime soon. We certainly don't want technology like this taking over his life so young w/o supervision. You can really see him growing up.. .asking questions. He got sad a few weeks ago because he mentioned about “dying”. He started crying about the conversation. 🙁

Thank you to everyone for their kindness! Please keep us in your prayers.