As told by Kat » Halloween http://www.mrskatvon.com Living with Juvenile Batten Disease Mon, 15 Mar 2010 00:58:58 +0000 http://wordpress.org/?v=2.9.2 en hourly 1 We’re home! http://www.mrskatvon.com/2009/09/27/were-home-3/ http://www.mrskatvon.com/2009/09/27/were-home-3/#comments Mon, 28 Sep 2009 04:00:16 +0000 Kat http://www.mrskatvon.com/?p=1307 We went on our Make A Wish trip to Give Kids the World, Disney, Universal and Seaworld (all down in Florida). I still can’t get over how hot it is down there in the fall! It was stressful because the kids are young and Rachel is clearly not on the correct medication but we definitely had a lot of good moments and took some great pictures! I’m glad that Rachel was able to experience the things that she did while we have usable vision. Who knows how long she will have that for. We have seen another decline in her vision in the past couple of weeks and she is starting to feel things much more rather than look for / at them.

I posted some WONDERFUL pictures of our awesome Make A Wish trip on Rachel’s facebook page, feel free to look! We met Mickey, Minnie, held an alligator, took Rachel on lots of rollercoasters and met some wonderful volunteers and people at Give Kids the World!

http://www.facebook.com/pages/Rachel-von-Tungeln-LIVING-with-Juvenile-Batten-Disease/266424125552?ref=ts

Julie has been having lots of meltdowns that I would expect to see a few years ago. I think part of that is she is tired but certainly another part of it has to do with Rachel and how she flips out and is so demanding to manage and refocus. Julie is definitely attention seeking and it truthfully is not surprising.

Boys are pretty much the same wonderful / obnoxious little guys that they are. London is back to preschool tomorrow and Boston starts back at his 2 mornings a week preschool that he is so excited for! I’m happy for them. Boston was so excited to go to preschool the Thursday before we left for Florida so hopefully he will transition well on Tuesday.

This coming sunday is our double birthday party for the boys turning 3 and 4. Halloween theme! I want to make it really special for all 4 of the kiddos but not make it too huge. I think either way Rachel will be overwhelmed and I might have to have my Mom take her away early depending on how she does. Who knows, she could surprise us all, right?

I was really happy to see that the University of Iowa just published a report on 9/21/09 that they have found a way to get through the blood brain barrier and treat 2 kinds of lysosomal storage diseases (Batten Disease falls under this group). Here is a link to the article on the BDSRA website:

http://www.bdsra.org/docs/research/nm.2025.pdf

I am starting to plan a handful of fundraisers, some of which will take place this year and a few in the spring. I would so love to see some kind of treatment before it is too late for Rachel. We go to the University of Rochester next week.

http://dbb.urmc.rochester.edu/labs/pearce/bddcrc/clinical_eval.htm

This just doesn’t feel like it can possibly be happening.

]]> http://www.mrskatvon.com/2009/09/27/were-home-3/feed/ 1 October 2008 http://www.mrskatvon.com/2008/10/31/october-2008/ http://www.mrskatvon.com/2008/10/31/october-2008/#comments Sat, 01 Nov 2008 01:49:15 +0000 Kat http://www.mrskatvon.com/?p=878 Here are some great pictures of my beautiful family from October.

http://picasaweb.google.com/thegoodgeeks/Halloween2008# 

]]> http://www.mrskatvon.com/2008/10/31/october-2008/feed/ 1 Halloween 2007 http://www.mrskatvon.com/2007/11/04/halloween-2007/ http://www.mrskatvon.com/2007/11/04/halloween-2007/#comments Mon, 05 Nov 2007 01:18:18 +0000 Kat http://www.vontungeln.com/?p=632 London
london_halloween.jpg

Rachel
rachel_halloween.jpg

Julie
julie_halloween1.jpg

Boston
boston_halloween.jpg

]]> http://www.mrskatvon.com/2007/11/04/halloween-2007/feed/ 3 Halloween Costumes http://www.mrskatvon.com/2007/10/14/halloween-costumes/ http://www.mrskatvon.com/2007/10/14/halloween-costumes/#comments Sun, 14 Oct 2007 11:54:46 +0000 Kat http://www.vontungeln.com/?p=625 We have gone back and forth as to what the kiddos are going to be for Halloween. After a meeting of the minds (me, Rachel and Julie at bedtime on Julie’s bed) we have decided that all 6 of us are going to dress up as pirates. I’m excited and found some really cheap pirate stuff on ebay. I think we’ll hire our photographer again (my Dad with a truly “sick” camera) and make a picture of us in pirate gear as our Halloween picture.

Watch this space for updates. I think this is going to be really cool.

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