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

Archive for the ‘Brisan’ Category

Well maybe not completely! It has been of course a few weeks since we last updated every one. On 5/24/10 I unexpectedly was informed that my position at work was eliminated. The term “coming out of left field” doesn't even begin to describe the situation. The company had to make some tough decisions due to financial reasons. I am working hard to find employment else where. We hope that it doesn't take long because essentially they only offered me my last check. Talk about not knowing what will happen….We know God will provide but it is scary either way. Along with my traditional resume I created www.Hire.MichaelStults.com. It is something I am using with my marketing game plan to find a job!

For Memorial day weekend we went to Family Camp with Pleasant Valley Baptist Church. We are very thankful we had the pleasure of attending. It was difficult at times because Brisan and Parker unintentionally do get hurt while playing with their peers. With the reduced coordination skills it makes it more difficult for them requiring a ton more supervision. It was nice to get away…get away from life for a few minutes even though we're consistently reminded with the boys the differences they have between their peers.

Brisan, Parker, and Duncan have been OK. As you see from the pictures below Parker has been fondling his butt as if it was his own little worry stone. This is his new thing. The boys started EYS (extended school year) last Thursday. Jennifer also visited Leggit Trails in Blue Springs to see how that school fit the boy's needs or at least Brisan's for now. Jennifer felt after her visit that they have all the accommodations that we would need to properly provided full services for Brisan.

Thank you to everyone that has kept our family in your prayers. We are very thankful and always want everyone to know this. We all have lives and problems that arise in our worlds but for you to take time out of your day to lift our family up in prayer is very special. Please don't forget about the Car Wash Fundraiser for the boys on June 26th. Details Brisan and Parker Car Wash Fundraiser.

This week has flown by! While our yard is developing it's jungle tendencies, both Brisan and Parker have had issues this week with mucas and drainage. They were coughing like they where standing on jack hammers every morning. Many of you know that for Brisan this is always an issue because of that life long sinus infection he has! I sure hope we can figure out these polyps in his nasal cavities.

On Tuesday Duncan had somehow hurt his knee so Jenn was instructed to take him into the ER. He seems fine now and maybe just accidentally bumped it pretty good.I think it might be a case of being a “boy”.

Starting this week through a program called Carousel which is palliative care for serious ill children, we have a registered nurse that comes a total of four hours a week. That will be nice to have because if something is pretty urgent then they can come over anytime we need them. We also have a social worker that also will come by. Also let's not forget the dietitian every few weeks to check on our needs if any at that time. Brisan and Parker will also get music therapy every few weeks too! That should be fun for them!   I laugh because if you turn on MTV or something like that…they all just kinda of stair!

Oh yeah…the van overheated pretty good. Looks like the head gasket needs to be replaced. 🙁

This weekend there is a softball tourney called “Battin' for Batten Disease” First Annual Softball Tournament. It is a very similar disease as Niemann-Pick Type C but strikes very quickly. We have a friend who's daughter is affected and not doing well who arranged this. Doesn't matter who you are….arranging fundraiser's isn't for the faint of heart!

Thank you to everyone for keeping us in your prayers. It is truly your caring and support that helps us because we know I'm not superman and Jennifer isn't superwoman!

Did we say how nice it was to be actually home all week and not traveling? This past Monday Brisan was able to access his port-a-cath for the first time since surgery on April 7, 2010. It was a calm week besides all the work Jennifer put into getting ready for the IEP meeting for Brisan, Parker, and Duncan on Friday the 7th.

Brisan's first usage of his port-a-cath

The meeting overall went well. Since Brisan is moving into Kindergarten next year, we needed to have the discussion on what was next for him. It was an emotionally charged atmosphere at times. We all know with Niemann-Pick Type C Disease that the outcome isn't pretty with the grim truth that there might not be an abundance of schools years left.  As a family we had many concerns if GV school district could accommodate us.

Brisan will essentially be going from 8:30 to noon, which isn't much different from now. He will participate in the regular class with his peers and also eat lunch with them. They agreed to hire an LPN for Brisan and starting Monday they will have an additional Para in the class for both of them for the remainder of the school year and beyond. Next year Brisan and Parker will both be in different buildings which poses a challenge. It probably is unlikely they will hire two LPN's.

The IEP isn't final until they formally write it up and give us our 10 days to review. We also spoke about Duncan starting next January. Parker's IEP will be talked about in this upcoming week.

Overall the stark truth was very sad and disheartening as we listened to all his inabilities. This is the time reality sets in and gives you a smack across the cheek. Just over the course of a year Brisan has regressed in a lot of his abilities. For others who are outside our home it might be hard to completely see this digression.

We will write more later! Honestly there is way too much to write about. If you have any questions please feel free to email Jennifer or myself .

Below are some pictures of Brisan graduating preschool on Thursday May 6, 2010.

It's been a week ago tomorrow evening (Monday) that we were finally able to return home after Parker's crazy situation while in DC. Nothing new has transcribed since we've been back with our doctors. You almost get the feeling that with Brisan's sinus polyps and Parker's blood redirection or loss that no one has an answer.  Leaves you wondering what shall happen next?  Brisan's sinus situation is so bad that it is causing his right eye to matte shut and consistently be weepy. Our new nickname for Brisan is “Pirate Pete”. That is what he looks like! Hopefully we can get somewhere!

Friday  we have an important IEP meeting with the Grain Valley School District regarding the future of the boys. Jennifer will be busy gathering information and coordinating up until then. The meeting will speak to all points hopefully on how they can and cannot fulfill the needs of Brisan and Parker. We also will speak about Duncan going next January to school. . There will be probably upwards of 20 people in attendance to discuss this matter.

Brisan is suppose to start Kindergarten in the fall. After three hours in the morning now he is completely wore out! There is no way in the world the little man can go all day. They would allow him to go a half a day from previous conversations, eat lunch at his own leisure, and allow additional attention to his needs. Many things besides what some would call “minor decisions” for us. The important issue here is safety, the schools funding of the special needs program, and if they can provide for our children. No hard feelings if they cannot.

Some would say that his progress is indeterminable because he has been absent from school a lot. Regardless, Niemann-Pick Type C is already taking it's toll on him and Parker. All we've seen from my recent memory is digression in all areas from quarterly updates.

We feel that there is a better alternative for both boys out there. With a state representative telling us that our school district will be losing  $400,000  in funding in the upcoming school year, this doesn't point to a sign that says they can fulfill the basic needs for our sons.

We finally made it home around 8 pm tonight! It was a great flight home. Unfortunately we didn't escape the storm with the drive home.

This next week should be very busy with follow up doctor's visits. I am sure more to come soon!

Yesterday was our last day for the NAC drug trial but unfortunately isn't our last day here. Early yesterday morning both boys started throwing up. They took turns every 15 minutes it felt like. After 3 sheet changes we made it into phlebotomy for their blood work.

We were essentially done after eating breakfast; well the boys didn't eat or show any interest. While in the lobby of the PED's clinic talking with other Niemann-Pick Type C (NPC) families Parker had a nice projectile vomit! After that moment he just became more pale than he normally is. Dr. Porter saw him and he was instantly concerned. We brought him back to an examination room where they think he had some type of seizure we didn't catch that made him unresponsive to what they were doing with him. We also found out we were suppose to leave Friday evening not Saturday.

During that time Jennifer's family (Uncle Jim's sister Tammy and family) drove up to visit but I was in the lobby with them during that time when Parker was not Parker. I do remember glancing in the room without knowing what was happening and thinking that Parker didn't look right. We all know Parker how if he thinks your going to touch him he responds!!!!!!!!!

Dr. Porter and Dr. Holmes felt that the floor they had him on where Dr. Porter does his protocol work for NPC, wasn't suitable to watch him properly. So they moved him up to ICU on the 3rd floor. At this point it was about 9 pm EST and poor Brisan hadn't even taken a real nap all day. He also was vomiting but he didn't act like Parker did (Brisan seems to be doing well this morning as I write this).

The biggest concern after getting Parker into a room for testing was why his hemoglobin was so low. It was a level 6 which in adults we would be pretty lethargic and non responsive.  His heart rate and pulse were up and his blood pressure was low. The question that remains is where is all the blood going? Jennifer updated me this morning that they gave him a blood transfusion and he is now up to level 9. She said he isn't a 100% but appears to be improving from the low points over the last 24hrs.

We have a scheduled plane ride tonight at 6 pm EST but we are a 100% sure that isn't going to happen. I would suspect maybe Monday we could come home (???). Thank you for all your support and prayers! Truly it is your support that makes things better because alone we are not capable of producing such comfort on our own.

Isaiah 41:10 ESV
fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.