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

On Monday, I just was fed up with Brisan and the amount that he was sleeping. So I took him back to Children’s Mercy Hospital around 2pm. By 7pm the ED agreed that Brisan was in a ton of pain and needed to be readmitted to the hospital.

This afternoon Brisan has an eye exam and CT while under sedation. Come to find out, after more than a year, Brisan has an acute Corneal infection in his right eye. The doctors said that it is really bad and we are going to have to keep an eye on it (no pun intended). If untreated it can eat a whole through his cornea. So they are starting him on IV antibiotics along with steroids and a Morphine drip for the pain.

Hopefully this will open a ton of doors for Brisan and he will be able to see out of that right eye again! Now we just have to pray that there in no damage to his cornea and that he will cooperate with the medications that we will have to put in his eye until it is better.

Jennifer took Brisan to the ER on August 31st because he just wasn't himself. He had thrown up a few times which he shouldn't be able to with his fundo in place. They admitted him late in the night and he literally slept for 4 days. Over that time he developed a fever, rash, body/face swelled, very large spleen, and was completed depleted of energy. Keep in mind that although he has Niemann-Pick Type C he can develop other health challenges in conjunction. We certainly are aware of the neurological breakdown taking place in Brisan.

After a battery of tests for almost everything imaginable under the sun we still never received an answer to what may have caused this. Since we haven't seen Brisan in such this state before we couldn't help to wonder what did this turn of events  have in store for us. Typically when we have a big health issue he has shown digression afterwords.

He is feeling better now. Still a bit wobbly walking around. We are shooting to send him back to school on Monday :). On other notes Jennifer was accepted into Grad School. Parker has been having a good start to his school year and seems to enjoy it much more so far. Lately though he just isn't sleeping. Duncan has been his cute little self. The kid is just developing more everyday! In some ways it is like having our first kid!

Thank you to each and every one of you for lifting us up to the Lord. We will need the continued support to just deal with life on top of the boys' situation.

Just wanted to share a quick video from Brisan's 6th birthday party at Pleasant Valley Baptist Church in the Connection Cafe. That place is the perfect set up for entertainment!

Brisan hasn't felt well since yesterday morning. He threw up which was interesting enough considering he has a fundo placed (keep him from throwing up). Enjoy the video below.

Brisan's 6th Birthday Video

Brisan started Kindergarten this week! Parker also started his last year of Early Sped which kicked off in the new Early Childhood Development building about 1-2 miles away from the house in front of the district building. They both seemed to have a good week from the feedback we received. It is kinda nice that Parker leaves earlier than Brisan now. We don't have to rush getting both ready at the same time.

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Last week was a very busy week. Brisan and Parker both started physical therapy at Children's Mercy Hospital. It is kinda of funny that they “started” when we went almost two years ago and told us that “they didn't know what they could help us on” and that “oh…Medicaid will pay for these for visits”. HA…that wasn't the case with Medicaid. The good part is they are getting additional therapy. That is what matters most.

Also they met with their new neurologist. They started the boys on a cataplexy drug this week as well which is one pill at night. It should help manage when they lose muscle control and fall. She also consulted with Dr. Marc Patterson on resuming the boys on Zavesca. So that will be started up again very soon! That stuff is pretty expensive (like 190,000 for both of them). It will be interesting when we will have to find new commercial insurance at the end of the year.

On Wednesday August 11th, Brisan and Parker had a minor surgery to remove the granulation tissue around their G-tubes. Starting next Wednesday they both will start school. For Brisan it will be Kindergarten! Big day for the big birthday boy this month. On the 27th he will be 6!  We still can't believe it!

Jennifer's Dad Tim purchased a swing set for the boys. Last Sunday we started putting that monster together! Now we know Brisan and Parker probably aren't going to be able to enjoy it like more traditional kids their age but hopefully they will find something they will enjoy. Duncan probably will! The neighbor girl was telling her mommy that “mommy they are building my swing set”. HA

It has been a few weeks since we last gave an update for everyone. Brisan and Parker seem to be doing better for now. We haven't had any ER trips or anything very special.

Last weekend my mom and step-dad put together a fundraiser for the boys. It went well for the first time they've attempted something of that nature. To us we were thankful and any help is indescribably appreciated.

I did get a few questions if I found work. The answer is yes! I started a few weeks back with a similar company as the one I worked at before in the online marketing space. I can't take credit for this opportunity. It really was God putting it in my lap. I had other interviews but things didn't work out as far as pay or just the overall situation. I am aware that my previous employer isn't too excited for me to have this job but I am fond of living in my home and providing for my family. They certainly didn't consider my family to thoroughly when they eliminated my position. My intentions are pure and nothing in me wants to be detrimental.

Here on August 8, 2010 will mark the two year anniversary that we received the crazy news about the diagnosis of Niemann-Pick Type C. Below you might have heard this recording in the past but it was a few days after his tonsil and adenoids surgery he called me at work and left me a voicemail. The sad part is  he talked pretty well at that point but now he is pretty nonverbal. Now he can still talk but just doesn't choose to say much anymore. If so they are typically one word phrases.

Brisan5-27-08 by MichaelStults