Infantile Spasms - infant epilepsy - Microcephaly (Brextin became our guardian angel in May 2010)
Search Brextin's Blog (type in Medek, Oxygen therapy (HBO), Wingbo, neck ring,G-tube, etc)
Sunday, June 27, 2010
Saturday, June 19, 2010
Friday, June 18, 2010
G-tubes have been sent out!
All of Brextin's remaining G-tubes have been sent out to well deserving families - may the families find them to be of good use!
Monday, June 14, 2010
Missing Brextin!!
I am extremely sad - missing our little guy! At times I still struggle with the "whys" just like I did when we were told he would be a "special child" They just never stop!
However, I just got word that the monument place is working on his proof for his memory brick that will be placed at our local zoo- he will be the first one EVER to have a photo included. They were going to do an etching portrait ($425) - but asked if they could actually do a porcelain portrait ($300) instead http://www.everlifememorials.com/ceramic-pictures-s/22.htm (it would look something like this) (However they go through their own company) - they even guarantee the photos for life! We will be using the portrait that was taken professionally back in December - the one that was posted with his obituary.
However, I just got word that the monument place is working on his proof for his memory brick that will be placed at our local zoo- he will be the first one EVER to have a photo included. They were going to do an etching portrait ($425) - but asked if they could actually do a porcelain portrait ($300) instead http://www.everlifememorials.com/ceramic-pictures-s/22.htm (it would look something like this) (However they go through their own company) - they even guarantee the photos for life! We will be using the portrait that was taken professionally back in December - the one that was posted with his obituary.
Tuesday, June 8, 2010
Supporting Jaxen!!
We just attended a wonderful benefit for a local 4 year old boy who suffers from Sotos Syndrome. http://www.sotossyndrome.org/what.php We met him through Brextin - and enjoyed ourselves very much - a ton of family, friends, and strangers came to support him at a local establishment - he is one totally cute kid!
Thursday, June 3, 2010
Vision books(these are amazing!)
These were some of the books that Brextin received from the state since he was legally blind - they were truly amazing - I just wanted to pass this information onto other parents - the only disappointment - is that they are expensive - the books ranged from as low as $17.00 all the way up to $71.00. Some books were 3D - if you look closely to the picture with the pretzels you will notice that the pretzels actually pop out of the page - they are truly amazing. Here is their webpage - scroll all the way down you can view other books and items. https://shop.aph.org/webapp/wcs/stores/servlet/Category_412A2B2C_10001_11051_20721_-1_20716
Subscribe to:
Posts (Atom)