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Well im guessing the invite came after a lot of you are aware my second child Bailey has been born with a rare brain condition that effects less than one in a million there are no answers to why it happened, that took a long term to come to terms with surely there must be a reason why my baby?
His condition is called Hemimegalencephaly his right brain is conciderably larger that Hemisphere is smooth that indicates its useless, but worst of all its caused him to have upto 100's of seizures a day and we new from the day he was diagnosed no epileptic medication cld fully control him at best he got down to 3-6 visable, but eeg showed activity was almost 24/7 and surgery by the time he reached 9 months was essencial. He's spent the last 7 almost 8 mnths on meds at home and has been admitted once after a 12 hr seizure and rescue meds proved ineffective, this called for his surgery last monday 10th feb he was planned to have a right functional hemispherectomy disconnecting his right brain and removing parts, unfortunatly that didnt go to plan and cld only be 50% completed after huge blood loss and a transfusion.
We were mortified when the surgeon told us we'd have to go again in 2-3 mnths but delighted to have him safe, just 3 hrs after surgery a heavily sedated Bailey attempted to wake and let us all know he wasnt pleased about the tubes in his nose, initially i noticed his left side wasnt moving, it had always been his weaker side and we knew that surgery would tk its toll mnths of physio would follow, but they quickly topped up his sedation, now a week later hes out of icu on a normal ward and better than ever no seizures since and he has mobility of all limbs. Even tho things arnt as i expected im glad we did it theres a small chance they have done enough but its unlikely right now were enjoying him for being him with out the constant interuptions of seizures.
He sld have come home today but his very difficult to get blood out of his line was blocked yesturday and after flushing it they planned to try else were that took untill 5pm today beacuse they didnt try hes nt that alkward and the doc needed those results this morning, but as long as hes well what mr can we ask for hopefully tomorrow will be the day hes big bro misses him so much and what with things taking there time ive not seen bailey all day weirdest thing for mother x
were also wondering about why on the board with patients names it says meokal nxt to bailey and a green dot its driving me mad got a txt to look online why cant men ask? so if anyone knows plz let me know im a willing him home and this means otherwise?
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Re: hi and thanks for the invite
i dont know if u believe in a higher plan. but i think there's an extra special plan for your baby's life. when i was 7 months pregnant, doctors only picked up 1 heartbeat, a few hours later, there was a second heartbeat again. my baby was born normal, but very quiet, hardly ever cried, always at peace. when she was few days shy of being 7 months, she was injured at creche, her skull was fractured! when she ha her final check up, there was no brain damage, no bleeding and the crack was closed. i personally had a similar experience. where i was preparing for the worse, but i am still alive and mother to 2 babies. they didnt expext me to live beyond 20, i'm almost 30 and my test all came back negative, again and again. well, my child's personality changed so much after the head injury. she's still not much of a crying baby, but she's a total extrovert, laughs, bables, calls me "mama", her dad "daddy", my mom "ma", my sister and her sister "baba" she knows who is who. she will say "sheesh" if something is smelly, she says "ta" if u hnd her something. doctor said she is a bit advanced for her age, she is 11 months old. she had a photo shoot 2 weeks ago and aced it! my point with all this? there is a reason why God chose you to be the mother of such a special child. He decided to blessed you with this opportunity. you'll be amazed at how much you will learn from your child, just by the way he or she interacts with you or others, even the eyes tell a tale. a few years from now you'll look back at this time as the most precious. i am telling you, you are blessed among mothers. all the best
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14:50
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