About Me

I am a 25 year old Mother of a beautiful 3year old son who is disabled. His disability has change my life as a individual for the better. I am much stronger from having him and even stronger for his disability.Our story begins at birth with him having siezures of unknown origin at 11 hours old he was sent to a local childrens hospital where he spent aproxamately 1 weekand a 1/2 being poked and prodded the first test outside of normal baby screening was a spinal tap, OUCH I still cringe at the thought of a tiny baby that small having something like that done! that said they had no known cause still at release from the hospital......i grew very attached at this point iwas so afraid to let him out of my site or put him down. afraid that if i did that something far worse would happen(i addmit i still am very protedtive and attached that way) but we slowly got to a point where I was comfortable with my family holding him. as time went on he was developing normal...or so I thought. he could hold his head upand was making some bable sounds at 2 mths i notice he was shaking....uht ohhh the siezure came backthats when things began to fall apart he was not appearing to eat normally he had some suck problem but we thought it to just be normal part thing were far worse though his suck literally dimished and we found out that he has a condition i believe referred to as disphagia this condition deals with the suck swallow of a person he has silent aspiration which means every time he swallows it goes into his lungs... do you know when you are drinking a drink and suddenly your coughing cause it went down the wrong way? well that aspiration so when he does that though he can't feel it and cough which is the automatic reflex to rid airway of the obstruction. As a result of this condition he had to have a feeding tube by 11 mths old. so lets go back a few mths though we had not noticed the full extent of his disability until he was 5 mths old everything he was doing stopped and the things he should be doing never developed. Thank God for our mothers my ,other helped me find the help i needed and asked all the right questions from the min he was born she was the angel who watched over him and gt him the proper attention he needed.she was first to notice the siezures at birth the doctors said he was fine but she fought for him cause i couldnt i had had no expierience in visualizing a siezure in a baby that small but she had with me and as a nurse in her profeesion(so thanks mom) anyways at 5 mths we took him for a second opinion to a nurologist who said he was very sure that my son had classic cerebral paulsy of unknown origin.....there was clerly no cause in there moinds at any point why my son is the way he is i had normal pragnancy and ddelivery...i did fall at work about 8 mths preganat but the doctors are convinced that it played absolutely no roll in my sons disability ...i am not convinced of that myself.and so we started with extensive therapy for him early on which is always the best thing.that was a struggle in itself many stories in tehreapy dept ill not dive into so if you have questions bout that just ask. his siezure got astronomically worse and he developed another type of siezure after his surgery for the feeding tube which is rare in itself most children do not develop this form of siezure that late in life so its possible he has ha dthem longer i assume anyways he developed a very serious siezure form on top of what he had called Infantile spasm very painful and scary from of siezure top or second to clonic tonic siezures.....he also had the form of siezure called partial complex siezure so 2 forms of siezure we started many treatment for him he was on topamax for the partial complex which had to be adjusted many times he ended up on a very hih dose that you would not normally give a child under 12 (so scary) and for the infantile spasm we had to daile 2 times a day steroid injection of a drug called atgar or acth and they wanted me to do that(as a parent i said no way am i sticking my baby with a needle you get a nurse in here) they did thankfully. those were very painful mths for me.i didnt begin to understand or excpet thing till after he turned 2 and when i did i began to understand the prupose of all this and why i was CHOSEN toi be his mommy and to have such a story as this one. he helped me to learn alot about life about faith and medicine. i am a stronger person because he is in my life. (thank sweetboy for changing mommies life for the better honey i am so grateful and i will stand by stand up for you no matter what.)well i am now confused about what i said ..lol forgot where i was in the story of my son and the dis he has ohh right let me end with this cause we could be here all day ....the current diagnosis is unclear so the doctors can onle use a general term to cover his dis called Global Developmental delay. we have been down genatics road as well so. i just accept that he is who is who is and he is healthy for the most part and why worry over a name it wont change how wonderful, precious and georgeous he is he will always be my son with or with a name with ro without a dis so im just gonna love him and cherish him and what i get csuse life is too short and we aer not promised tomarrow. well if you have anymore questions please free to ask and ill try to answer them . im hear to listen as well so if you just need a ear give me a holler via disaboom email or in the chat room look foward to meeting al you fine people and learing about you as individuals and learing about your disabilities and struglles you face. i hope i can be of service to all of you cause that is what we are here for to help eachother.