THIS PICTURE IS A PICTURE OF
A ANGEL JOJO WHAT A PIC
I COULD NEVER GET ONE LIKE
THIS AGAIN.. IT WAS TAKEN AT
NIGHT WHEN THE SNOW WAS FALLING
OUTSIDE.. I JUST HAD TO POST IT
IT TRULY IS A ANGEL OF LIGHT!!
Friday, December 28, 2007
Thursday, December 27, 2007
my mommy got a new camera today and she took pictures of me and my little doggie Gizzmo and me and my daddy... and me and mommy.... we had fun with mommy's new camera...
hey guess what its snowing at my house and i am hopeing that i get to play in the snow tomarrow so mommy can get more pictures and i get to build a snowman with my daddy... we get snow but not this early.....
today we went shopping i said hi to everyone i seen.. of course i had to grap boxes of hair dye off the shelf but mommy said we dont dye our hair so she put them back....
i seen a lady and she got real close to the basket mommy had i thought it would be cool to snatch a idem from her cart LOL
but of course mommy said NO NO ... i thought it was funny but i dont think that lady did .... we then went and got my doggie he had a bath and a hair cut.. and we got him a new bed and a new sweater and coat.. because its cold.... and he is little..... so that was my day i had fun shopping with my mommy and daddy today i laughed and had fun....
Tuesday, December 25, 2007
CHRISTMAS 2007 WITH JOJO FAMILY
JOJO AND HER SIS.
GRANDPA AND JOJO
THESE ARE SOME PICTURES OF OUR FAMILY WITH JOJO AT CHRISTMAS AT GRANDMA AND GRANDPAS.. OUR FAMILY IS DADDY (ROSS) MOMMY(FERN) BIG SISTER (ALEX) JOJO CALLS SHE (KEEKEE). THEN JOJO IS SITTING WITH GRANDPA WAITING FOR HER PRESENTS.. AMAZING SHE SAT SO LONG ..... MORE PICTURES
GRANDPA AND JOJO
THESE ARE SOME PICTURES OF OUR FAMILY WITH JOJO AT CHRISTMAS AT GRANDMA AND GRANDPAS.. OUR FAMILY IS DADDY (ROSS) MOMMY(FERN) BIG SISTER (ALEX) JOJO CALLS SHE (KEEKEE). THEN JOJO IS SITTING WITH GRANDPA WAITING FOR HER PRESENTS.. AMAZING SHE SAT SO LONG ..... MORE PICTURES
MORE PICTURES OF JOJO AND HER GRANDMA AND BIG SISTER
JOJO IS PLAYING A GAME WITH HER SISTER TRYING TO HIT A FROG AND IT MAKES NOISE AS IT FLYS TO THE OTHER SIDE OF THE GAME.. AND SPLAHES ONTO THE TABLE SOUNDS LIKE IT IS HITING WATER... SHE HAS SO MUCH FUN..
JOJO IS PLAYING A GAME WITH HER SISTER TRYING TO HIT A FROG AND IT MAKES NOISE AS IT FLYS TO THE OTHER SIDE OF THE GAME.. AND SPLAHES ONTO THE TABLE SOUNDS LIKE IT IS HITING WATER... SHE HAS SO MUCH FUN..
JOJO IS FEEDING HER LITTLE MY LITTLE PONY BABY HORSE THAT HER GRANDMA GOT HER FOR CHRISTMAS... SHE LOVES IT..
WE HOPE THAT ALL OUR FRIENDS HAD A MERRY CHRISTMAS
Thursday, December 20, 2007
me and my big sister at christmas last year
well today my mom made up gift bags for all my classmates at school we are going to have a party tomarrow (fri) then i will be out of school for a full 2weeks.. i am going to have christmas at my Grandma and Grandpa Henderson on christmas eve.. and my big sister Keekee will be there too.. i enjoy playing with my big sister even if she is 7yrs older then me.. i see her when she comes and visits.. she has gotten bigger now and she just comes to my house once in a while she has alot that she dose now...
i sure cant wait for christmas im sure santa will bring me all kinds of toys to play with
i get to spend a week with my meme she is alot of fun and my mommy and daddy need a break so they can get some rest....
Wednesday, December 19, 2007
I AM A ANGEL
HI my name is JoAnna "jojo"
I would like to tell you alittle bit about my selfLet me start by saying:
MY mom is the one that types this for me and she will be making sure all is right with any post that anyone my post on my blog...
OK now with that said i will tell you about me
I am 5yrs old and have a Genetic disorder called "Angelman syndrome"
My mom wrote a paper for my Aunt naynay so she is going to put it in this blog so you can see what she had gone thur with me so far then there will be more fun stuff after that;
Living with a child with Angelman syndrome
finding out that my daughter had Angelman syndrome was devastating and relief at the same time after 4yrs of wanting to find out what was wrong with my little girl to have the answer was a relief... Of course realizing the life long challenges that would come as she became older was very devastating..
When my daughter was born of course all was reg. Baby stuff the 3hour feeding etc.. but as she became older about 6mos she was not sleeping more then the 3hours at night and playing the rest of the time.. She had not met the normal milestones of development for her age.. And I began to worrie as I began my search there was more and more sleep less nights... as she grew the sleep became even less and the all night play time became increased....
By the time she was 1yrs she was barley siting up on her own and didn’t hold anything on her own no toys or bottle.. She was always happy and smile giggle baby... but I know that this was not right... along my journey of the search the nights of sleep became less she would finally fall out to sleep about midnight and sleep until 2am and our day was on there was no sleep until maybe about 2pm in the afternoon and then only hour if I was lucky then play began again... this was our normal life for me and my family ....by the time my daughter was 1 ½ yrs there was no speech and she was still the little baby... At 2yrs still she was no speech and milestones were slow coming even with early intervention...and of course the sleepless nights....
This is hard for my family when my daughter is awake some one is awake also
she is now 5yrs old and has been on sleep meds from the age of 3yrs she takes
0.4mg of clonodine at night for sleep
50mg of trazadone at night for sleep
0.1mg clonodine is given as a PRN to keep her calm
0.2mg of clonodine is give for nap..
300mg of trileptal is give twice daily for seizure and behaviors
along with 0.1mg of clondine
These meds help but even with all of them she still does not sleep
she has behavior because of the communication /speech delayment.. So you learn to duck flying objects and hope you are not on the receiving end of a hit pinch or bite..
Living with Angelman syndrome is very difficult
our lives are centered around our child.. Because of her needs going out with friends or visiting with family is very difficult.. AS kids are not very still for very long...
Getting some one to watch a Angel is not easy.. Because they have no fear of being hurt and they don’t feel pain like a typical person so you are always on your guard.. Saftey is always on your mind when it comes to a Angel... our lives and activities are more based on what our child can be involved in and not what we as adults would like.. When you have a Angel your life becomes therapies diaper changing and child proofing catching sleep when you can..
Of course everyone that meets our Angel falls in love with her but the life that family live are hard looking for ways to get services and just helping your Angel with daily needs can be a work out...
finding out that my daughter had Angelman syndrome was devastating and relief at the same time after 4yrs of wanting to find out what was wrong with my little girl to have the answer was a relief... Of course realizing the life long challenges that would come as she became older was very devastating..
When my daughter was born of course all was reg. Baby stuff the 3hour feeding etc.. but as she became older about 6mos she was not sleeping more then the 3hours at night and playing the rest of the time.. She had not met the normal milestones of development for her age.. And I began to worrie as I began my search there was more and more sleep less nights... as she grew the sleep became even less and the all night play time became increased....
By the time she was 1yrs she was barley siting up on her own and didn’t hold anything on her own no toys or bottle.. She was always happy and smile giggle baby... but I know that this was not right... along my journey of the search the nights of sleep became less she would finally fall out to sleep about midnight and sleep until 2am and our day was on there was no sleep until maybe about 2pm in the afternoon and then only hour if I was lucky then play began again... this was our normal life for me and my family ....by the time my daughter was 1 ½ yrs there was no speech and she was still the little baby... At 2yrs still she was no speech and milestones were slow coming even with early intervention...and of course the sleepless nights....
This is hard for my family when my daughter is awake some one is awake also
she is now 5yrs old and has been on sleep meds from the age of 3yrs she takes
0.4mg of clonodine at night for sleep
50mg of trazadone at night for sleep
0.1mg clonodine is given as a PRN to keep her calm
0.2mg of clonodine is give for nap..
300mg of trileptal is give twice daily for seizure and behaviors
along with 0.1mg of clondine
These meds help but even with all of them she still does not sleep
she has behavior because of the communication /speech delayment.. So you learn to duck flying objects and hope you are not on the receiving end of a hit pinch or bite..
Living with Angelman syndrome is very difficult
our lives are centered around our child.. Because of her needs going out with friends or visiting with family is very difficult.. AS kids are not very still for very long...
Getting some one to watch a Angel is not easy.. Because they have no fear of being hurt and they don’t feel pain like a typical person so you are always on your guard.. Saftey is always on your mind when it comes to a Angel... our lives and activities are more based on what our child can be involved in and not what we as adults would like.. When you have a Angel your life becomes therapies diaper changing and child proofing catching sleep when you can..
Of course everyone that meets our Angel falls in love with her but the life that family live are hard looking for ways to get services and just helping your Angel with daily needs can be a work out...
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