Monday, July 25, 2011

we all sing the same song

sleepless nights have become the norm around here for me. tossing and turning. thoughts  and worry keep waking me up every hour. until finally, out of exhaustion i do fall asleep and then i hear “moooom! come in here!” from the next room. so up i get and start the day with two boys full of energy.

the reason for all this worry: ozzie. he is now 23 months old. i originally wrote about his delays with walking here and here. but really, i haven’t gone into much detail. last thursday afternoon we had an appointment with a pediatrician. we were originally referred to a developmental pediatrician, which we just learned our appointment won’t be until sometime in april....2012. and that’s if we’re lucky. ozzie has yet to have an appointment booked, he is just IN the system.... um ya. please don’t even get me started on that one. 

at the pediatrician’s we described all the little nuances ozzie has. his abnormal gait. his right arm and how he doesn’t use it as much. we mentioned what he’s been doing in physio and occupational therapy. the doctor gave him a once-over, watched how he walked and interacted with his father and i. we asked him for his opinion of why ozzie's physical development and movements are unusual.  he said that it is not his area of specialty but he feels that basically it is the communication between his brain and his motor skills that is not functioning as it should. likely the result of an event and it is non-progressive.

brendan responded with, “you’re describing cerebral palsy to a tee.”

the doctor said that he doesn't like that label because it is too all-encompassing. it is such a broad term and the degrees vary from person to person. but the bottom line is that yes, what he has is a form of cerebral palsy. and it isn't really a disease but more a fact of life for ozzie. he will have to develop around these limitations, they won't get worse and his body may find ways to "rewire" around the problems.

the pediatrician is scheduling an MRI to look at ozzie’s brain and he is also referring him to a pediatric orthopedic specialist to check out his hips and feet. if he needs orthotics to help with his walking, we’ll be going in the right direction.
the doctor said that ozzie has nothing wrong mentally, seems very intelligent and has a great personality. i say he’s a fully functional boy with a few limitations.

upon hearing the diagnosis:
heavy heart.
sadness. frustration. anger.
more anger.
more sadness. not for me as a parent with a child with cp, but FOR my child. for his future. kids can be very cruel. i see his budding personality is one of much strength and independence. he is so so funny and entertaining. always mimicking his older brother. we can only hope to foster ozzie’s mind with hopes and dreams and that the impossible IS possible; like i would for any child of mine. to strengthen his heart and self-esteem when he’s down; like i would for any child of mind. i know ozzie will perservere he’ll be strong. he’ll be passionate. he’ll be loving. he’ll be creative. he’ll be smart. i know this, because he already is.

we have a big support system. family and friends alike. two very caring and concerned physio & occupational therapists. more doctors will be involved as he grows, i’m sure. and we’re heading in the right direction therapy-wise. i’m not struggling with this part of it all. this will become our new routine. doctor’s appointments and therapy sessions. what i am struggling with is the why. the how. the when. because ultimately we will probably never know. i'm sure this will stay with me forever. a small chip of guilt on my shoulder that no one will ever be able to rid me of. this part is hard. and will remain that way.

but so will the immense love for my little boy. 


video credit: sesame street.

Tuesday, July 5, 2011

internet vacation?

sort of i suppose. but i'm still around. online. checking email. checking out your posts. bookmarking crafts i want to do. or recipes i would like to try. procrastinating. the ever growing to-do list. but i'm mostly just hanging with my homies. visiting the splash pad. the beach. our backyard. family. the pool. popsicles. craft time with the kids. play doh. ice cream cones. siestas. forts. bbq's. t-ball. playground. feeding the chickens. ribfest. carnival rides. making "cement." garage sales. digging in the sandbox. sunroom. relaxing.

this is summer. and i am enjoying it.