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

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Just a quick update for everyone. Brisan has been doing well. A few throwing up spells but overall he has been in good health considering all things.

Parker has taken a couple big spills forcing us to have him stay in his chair more often. We don't have enough bubble wrap to put up every where in the house! They both have been enjoying school which is a delight!

Duncan is still potty training. For the most part he is starting to get the hang of it. We have a meeting Friday to see if he will start school on his 3rd birthday in January.

We still are dealing with health insurance and trying to figure out the best thing to do. Having Brisan and Parker on Medicaid isn't the best option but realistically we are being priced out of the market for private insurance.

We were able to come home late last night (Tuesday). Brisan is feeling much better and we can finally see his right eye ball! We still have another few weeks of meds to make sure this staph infection in that eye is done.

Thank you to everyone that has continued to help in any small way. We are very thankful!

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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