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

Posts Tagged ‘MO’

I was able to get the “dudes” on the camera last night. Of course they had no interest in what I was doing because one of their favorite cartoons was on, The Penguins of Madagascar! Parker started having some bleeding while he was at grandma Carnes's house this week. Yesterday ARJ Infusions Services came out and did another infusion of DDVAP for both of them. They also will both get another infusion on Monday, their regular scheduled day.

It appears unofficially that they will be going to twice a week infusions. That is our hunch at least. Below is a video of the guys after dinner: (if your unable to view via your email update, click here: http://www.youtube.com/watch?v=zoWaslyYsdk)

In the video as you can obviously see ( ha ha) they are both getting a feed through their GT's. Brisan will surprise us every now and then and eat a whole bunch but we need to supplement his calories. Parker loves to eat as well but we want to make sure they have a full belly before they go to bed. Hopefully that will help them sleep.

You also will notice how Brisan really doesn't like to look down at his food (well cookie!). You have to love the vertical gaze palsy!  Either way we love the little guys! Thank you to all for everything. There will never be an action or material item that could say thank you for the prayers, support, and love you've given our family.

Well crime scene intact partially… We were up most of the wee hours of the morning with Brisan the “Flinstone Cat” not wanting to sleep and roaming between our bedroom and his. Around 6 am Parker comes up to my side of the bed and not thinking much of it Jennifer goes Parker is bleeding!

Took him in our bedroom and I can not recall the last time he literally had blood from head to toe on his body. All down both legs and arms including his face. The first go around it took about 30-45 minutes to get a clot to stick. During that time Parker turned into Rambo and tried to break loose. Can't blame him but it is frustrating since your trying to get him to calm down so you can apply pressure to his nose.

We put him in our bed and I proceeded to get ready for work. As soon as I was going to leave he blew a big sneeze. Must have been as powerful as the winds in Kansas City this morning! The 2nd gold rush started (minus the gold). That was talking another 30 minutes to try to stop it. At that point we just called the ambulance to head down to Children's Mercy Hospital. There they gave him DDVAP and checked out his hemoglobin. It was low. He is doing OK now after a long morning and early afternoon.

There has to be a way to help this out some way.