Archive for the ‘Michael’ Category

Parker not doing well

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!!!!!!!!!

Parker before ICU 4-23-10

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.

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Trip Update 4-22-10

Today started off pretty early at 8 am EST in the PED's clinic. We did our basic “overview” of the last eight weeks with Nicole (Dr. Porter's nurse). Infectious Disease came up and spoke with us twice.

Still a mystery with Brisan's sinus issues but they wanted to do a few work ups that haven't been performed yet to rule out any additional possibilities from previous conclusions (maybe lack of???). After a long day we finally were able to get a nap inn and polish off the evening eating some Chinese food!

Tomorrow starts off at 8 am EST again to do a tanker size blood draw. Hopefully we can get through that without a hitch. We should be able to meet some other Niemann-Pick Type C patients tomorrow as they are having a noon lunch/ meeting here at the Children's Inn.

Jennifer & Parker at aiport 4-21-10

Parker thinking at airport 4-21-10

Brisan eating dinner 4-22-10

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Today we are heading East to Bethesda!

In about an hour we are leaving to head towards the airport for our last trip for the NAC Drug Trial at the National Institutes of Health in Bethesda, MD. The trial started at the beginning of December 2009.

We'll have updates as we go along but please pray that we have a safe trip today and the boys are able to be comfortable enough to last through the trip.

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Easter Egg Hunt

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)

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It’s All New

Welcome to the new BriParDun.com Site! Moving forward this will allow us to post and keep everyone updated on the boys and such much easier by me and Jennifer. Please refer to older posts at:

www.Blog.BriParDun.com

Brisan, Parker, Duncan in the wagon

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