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...