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

Posts Tagged ‘Duncan Stults’

Happy birthday to Parker & Duncan! Parker turned five this month and Duncan turned the big three!

Here is a video from their party. I was going to say short video but it is much longer :).

Thank you so much to all that came out even with all the snow! They both had a great time. Also thank you to Lee & Julie Bailes for taking pictures (will update this post as soon as we have them uploaded to get on here).

[ View on Youtube: http://www.youtube.com/watch?v=_hGZCnfvFsU&hd=1 ]

On Monday Brisan was having troubles with his seizures and his right eye started to look funky again. I think we might buy him an eye patch so he can be a full time pirate if need be. Here are a couple videos we took last night. One of Duncan being silly and a complete cheese ball saying his name, trying to count, and how he has his underwear on backwards.

Also have Brisan getting his treatment done on his G-Tube site. He has a fungus around it and the skin is pretty broken down around the area. You will see we have him in a “onesie” that we cut a hole above his G-Tube. The onesie is so he won't “play” with his diaper as much but it totally gets in the way of doing his feeds/ medicine. This is the new regiment minus the cleansing wash we have to do recommended yesterday by the doctor. Interesting enough Medicaid paid for most of the supplies but something little that typically would be covered they did not. This is messed up with no private insurance…well at least affordable health insurance. We know the future will be better at some point with this issue but we have to “move along” as needed.

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.

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.

Easter was a pretty good day. Me and Jennifer went to church because we were apart of the 11 am service. The message was on Hope. At the beginning of the sermon they had put a picture up of us while one of the ladies from the drama team acted out our monologue about our story. She did a wonderful job and it was surreal to be hearing our story. I hope that it was able to make an impact.

The boys were at Gma's & Gpa's house while we attended church. Typically we go Saturday evening. We had a good lunch followed by hunting for the wabbit! Below is a video from the Easter Egg hunt we had in their back yard. The boys did a pretty good job “wondering” around! HA I think they had fun.

(In case you can't view this video on your email version: http://www.youtube.com/watch?v=CrhfcmcCEWQ)