[deleted account] ( 1 mom has responded )

my name is sonia . i am mom to saffron who is 2 1/2 yeas old . saff is sort of L4ish...never can get a definitive answer on that. she had surgery 22 hours after birth to close her back and since then (knock on wood) we have had smooth sailing.
saff sat up on her own at 5 months and didn't crawl until 17 months. she got her wheelchair around that same time but uses it seldom. she much prefers to crawl and has just recently started to cruise around furniture and walk short distances with a walker. we had reached a point when we were sure she would never walk on her own when she suddenly figured it all out.
right now our biggest concern is the POOP situation! i am so sick of poopy diapers! she takes
1 tsp of PEG (miralax) daily and just poops all the time. we have clinic in march and i am desperate for some answers.
saff is my adreneline junky. she loves to "go fast!" be it on 4-wheelers, snowmobiles, in the boat or in the car. she is a daredevil and an absolute joy. she started talking early (9 months) and sounds more like a teenager some days than a toddler.
her favourite thing right now is watching the wizard of oz...every day!
she is all hyped up about her swimming lessons which start on saturday, she has been practicing lying down and kicking in the bathtub all week.


Tanya - posted on 02/11/2009




hi my name is tanya,i live in england i have a 4yr little Boy called Ryan he has the most severe form of sb,and hydrocepalus,he uses a wheelchair,he cant weight bear,but he commando crawls,around the house,Ryan bowels he can get very constipated we give him movicol at nite and we are trying to train his bowe4ls we put him on the toilet at nite times it seems to work,they say he may have to have enemas at nite before going to school,Ryan loves going on fast rides too hes a dare devil,and his fave film at moment is mamma mia,he sings it all the time

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