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

Archive for the ‘Brisan’ Category

Many of you who attended Brisan's birthday party back in late August should have received a thank you card :). Just wanted to share a few pictures of the swing we got him. Everyone was so generous that we had more than we needed and we choose to buy him an ipad. He has enjoyed watching his movies on it. We also have a few applications on there that he can use. It has been and will be a huge life/ time saver for us.

Not quit for sure if he enjoyed being on the swing or even swinging but I think he started to like it after a bit. I know Duncan and Parker enjoy it! Oh…and Courtney our neighbor's daughter. She is a cutie pie. Duncan always says “Courtney backyard”. LOL

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This past week has been very good minus one situation (get to that a little later). Brisan is doing wonderful. They came out Wednesday to adjust his chair since he has grown from when he received it last year. They had brought back his cover for the back of his chair but the zipper broke :(. So they have it on rush delivery to get fixed. He also received his “big boy chair” to use in the kitchen. That should be a bit more comfortable sitting at the kitchen table. Overall he has been in a good mood. Such a great mood that last Saturday he pooped all over our bed :). There still are concerns over his right eye and his ability to see out of it.

Parker has been in a great mood as well. He has really enjoyed school and went on his first field trip Tuesday (pumpkin patch). Today he had physical therapy and afterwards did some water therapy. Jennifer said he absolutely loved it!

Duncan is being a cutie and just saying funny 2 year old things. He has shown a lot of interest in baseball or any sport with a ball. Too bad that daylight is shrinking this time of year! He will start school at the end of January.

Now for the news we received last Friday (10-15). Jennifer was at Target getting refills on some of the boys' medications and they said Humana came back illegible. So she called me then I called Humana. The customer service agent stated that “my company” (no, not my company…my old company) canceled the plan. I knew they had recently closed their doors but did not put 2 + 2 together. The shocking part was we were not even informed of the irresponsible decisions of my old company. Looking back now we are thankful they kept open for as long as they did. Knowing what we know now we could have been out of insurance much quicker.

Some of you are wondering why we were on my “old company's” health insurance. I was laid off in July 2009. That prompted us to pay for COBRA.  It's not the best payment in the world but Obama's subsidy made it more affordable. At that time the best option was to keep our current insurance as we were familiar with it, we had met our deductible, and it was a plan that was generous in some areas verses others. Read the rest of this entry »

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.

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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