Well...another absence from me...yes, you guessed it, my little guy was in hospital again...when I started my blog i had intention of finding someone else out there in the word who had a condition the same as my son's.... his official title is.....acute life threatening spasmodic croup...basically his upper airways, his voice box area, close over very quickly, within a few seconds sometimes...at any point in a cold or virus....many of you probaby have had one of your children or friends chidren have croup...the difference is that Jacob's airways can close within a few seconds and that he is now 9 and it is still happening and on such a regular basis...this is where I need your help. Because it is so rare, in fact his specialist doesn't really know of any one ever, anywhere having it as accutely at such an old age...I would love to hear if any one of you know anything about anyone with this illness...
I am really going quite insane because the treatment is to watch him 24 hours a day...its tiring and emotionaly draining. and now he looks at me and asks me is he going to die...it breaks my heart to think on such a regular basis he tinks he will die...I would like to know if there is some hope for him, that there may be a cure, a fix, or something out there that can help him and me!!!
I need to talk to someone too...just to vent and know that someone understands...
I carry with me everywhere an emergency bag with loads of drugs and oxygen tank...its blooming heavy and so ugy...but we affectionately call it our e bag!!!lol...
We have not been on a holiday, when we go places it can't be when he is sick, and because he has a crappy immunity, he is sick quite often....we have been on a coupe of few day trips to the beach when he has been well. so i shouldn't complain too mush...lol...we need to know that if we go anywhere there needs to be an amdulance very close!!!!but I still take him to the city for adventures....so we try not to make him m iss out too much...
He is homeschooled because of his condition and when his twin goes to regular school and he is desperate to go too...well...it makes life tough!!!
This video is of him after he has been given his nebulised adrenolin and he is in hospital still having difficulty, but the emergency is over...the other is of his e bag....
so please...if anyone can hep me. i think you would have no idea how much i would appreciate it...
also the beautiful kristin at
TWINKLE TWINKLE
has given me this lovely award....thanks kristin...i think this blog entry is long enough for today without saying stuff about me..next entry!!!!lol...
until next time...
lots of it
mandy