So now that Braden has had nearly 30 days of antibiotics and two nebulized steroids, we were hoping for a little better outlook. While his overall appearance and health are MUCH, MUCH, better... Braden still doesn't seem quite "normal" for his baseline. He has shown signs of extreme aggitation for prolonged periods, and some strange breathing patterns. The respiratory doc should be seeing us in the next few weeks to address what we can, however there is some indication that this is simply the progression of Leigh's Disease.
This may mean that there might not be much we can do to fix the problem, and rather we must do what we can to deal with the symptoms and side-effects to minimalize their impact on Braden's overall health. For instance, Braden's lungs sound the most clear they have in a very long time - however - he seems to be struggling some at night with random asthma attacks, a return of the thick mucus, and a need for overnight oxygen, which we have not needed in quite some time now except for when he is sick.
Braden's follower "Layla's Dad" recently posted this video on his blog, and I thought it might really help some of you understand what living with a mitochondrial disorder is really all about, in simple terms. I hope you enjoy the view:
http://www.youtube.com/mitoaction#play/all/uploads-all/1/6_2oN1oTK-g
We have finished up Halloween costumes, and this year should be lots of fun as mommy goes as the Wicked Witch of the West, daddy will be a witch's "winkie" guard (you know, the ones that chant "oh-wee-oh, oh-oh"), and our precious Braden will be going as a flying monkey! A tribute to our KS roots - we hope everyone will enjoy the photos later this month:-)
LaTacia was kind enough to babysit and allow mommy and daddy a date night, daddy got surprise tickets to see comedian Ron White - thanks Tacia!!
Thanks to everyone who is ordering food this fall for his fundraiser - and EVERYONE can stay tuned... SPRING will be a silent ONLINE auction (join in the fun from anywhere)!! This year we are trying to gather funds to put a down payment on a converted handicapped van to transport Braden, by this time next year.
We will post when or if we have any more news to share on Braden's condition.
We thank you for your continued support, love, and prayers!
Braden, Brad, & Kodi
2 comments:
Thinking of you! I'd love to donate/make something from my boutique for the spring silent auction! Hugs for Big Boy B!
Thanks for being such an inspiration in our lives! You have been awarded. Check it out over on my blog.
baby-jackson.blogspot.com
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