sleep study

they called today to set up lexi's sleep study and the date for that is january 2nd. that was really fast to get her in but hopefully she cooperates and they get the information they need.

dates

finally got the dates for the appointments at Rileys. we go down on jan.20th for an appointment with the endocrinologist and the opthomologist. then on the 27th we go for a sedated mri and meet with the neurosurgeon. im praying for answers once and for all. hopefully around then we will get the results back from the geneticist. im anxious to find out what they say is wrong since all drs say there is a chromosome issue but they don't know what it is yet. also on Thursday we went to her developmental pediatrician and she wants lexi to have a sleep study since she snores in her sleep. they think her medicine is making her go into a too deep of a sleep. s

long overdue update

sorry for the lack of posts but between being busy and just not knowing what to write puts me behind. this past wednesday me and my mom took lexi down to riley childrens hospital to meet with the neurosurgeon. she said there is definitly a mass near her pituitary gland but she is not sure what it is. but she said it is her job to figure it out and she will. so we have to go back down to meet with an endocrinologist, an eye dr, have another mri done and meet with the neurosurgeon again. she also said that while the radiologist and her was looking at the scans that her brain receptors are not wired right. so what does that mean right now we dont have a clue. we are hoping to get some answers when we get the results from the genetiscist because she said there is definitly something wrong with lexi they are just not really sure what at this point. the good news is she hasnt had any seizures in almost 2 months. bad news is she still isnt talking and shes almost 4 yrs old.

well now

so after a second mri it turns out it is still a tumor but its a fatty tumor and its most likely not causing her problems so they most likely wont take it out. but the neurologist wants me to take her down to rileys anyways just to meet with the neurosurgeon and get his opinion. also while at the neurologist she sad her eeg came back abnormal so they started her on keppra and will also do another eeg in a couple weeks. they also scheduled an appointment with the genetisitst to see if maybe there is something wrong in lexi's chromosomes. i kinda hope maybe they can shine some light into why lexi is the way she is.

mri results are in

lexi had her mri today and they found a mass in her brain, most likely a tumor. tomorrow we are going back to have a contrast mri and then monday we are having blood work done and most likely be sent to riley childrens hospital soon after

hospital pics

this is when they did the eeg on 10/7

 this is when she was in the er on 10/6 waiting to be admitted

discharged

on Thursday the 6Th i took lexi to the park with her father and my friend maryia. we was walking around and lexi was a little bit behind me when all of a sudden i heard her fall flat on her face. i picked her up and realized right away that she was seizing. so right away i layed her down and yelled shes seizing and a guy at the park called 911 for me. they came and got her and took us to the hospital. once at the hospital we figured out that she started seizing before she fell and we knew that because she didn't try to catch herself. her Dr admitted her right away since she didn't have any reason to have a seizure. they did blood work, and an EEG. they also started her on kepra so she wont have anymore seizures. i have to schedule a MRI under general anesthesia and she has to see a neurologist in fort Wayne plus have a follow up appointment with her pediatrian this week.

just a couple pictures

Therapy

As I sit here while Lexi is doing her speech therapy it makes me wonder where she will be next year. Will she still not be able to talk that much or will next year be the year she starts communicating. I really hope so cuz I think some of her frusteration will go away. As for occupational therapy I don't see any progress at all. She still has alot of sensory issues. And hopefully soon she will begin physical therapy. Cvs has officially made me mad by doing away with liquid melatonin.

what a week

so as i said in my last post lexi had a seizure sunday night. well monday she had 3 more 1 of which was at the dr office so she called an ambulance and had her admitted for observation. she stopped running a fever on tuesday morning so she was released. wednesday she was fine but yesterday was plain horrible. she whinned the whole day which started by having to go to the developmental ped. she screamed and cryed the whole time but the developmental ped was able to say she wants lexi to have an eeg. we have to go back to her in a month. speech therapy was just as bad with her whinning. but then we went to her follow up appointment with her ped and found out once again shes running a fever. which of course caused another seizure.

always something

after i posted the last blog lexi had another two seizures before 830. so i called her pediatrician and they told me to come in. well i packed extra clothes just in case and we was on our way. they took us back and took her temp it was 102 again. so they tried getting her to take advile and she spit that on the dr so we undressed her and put wet blankets on her. the dr left the room and told me to yell if she started having another seizure. not even 5 minutes later lexi started seizing in my arms. so i yelled to the dr and she came running. she then looked at me and said she has to be admitted this is not normal. she called for an ambulance and off we went to the er. my sister in law bless her heart went into her work and explained what was going on and came to be at the hospital with me. they did blood tests,xrays, urine samples and nothing came up in any of them. they dont understand why she had a fever or why she was having seizures. we got released today after she hadnt had a fever for 12 hours

er visit

so last night i knew something was wrong lexi was whining more and i assumed it was her belly that was causing her trouble. so i laid her in her bed and laid down myself. at 930 i heard chocking noises and then i heard her fall off her bed. i got up and turned on the light and saw that she was actually having a seizure. so i ended up calling 911 and having them take her to the hospital since shes never had a seizure and i wasnt sure what caused it. we got to the hospital and she was running a 102 fever and she threw up. they did blood work and an x ray and said she has the start of pnemonia. well at least we caught it early just wished she wouldnt have had the seizure cuz it scared the crap out of me. as im writing this she is laying watching dora and running a fever again.

ranting

my mom took lexi to her occupational therapy on monday since i had to work. i guess while there the therapist looked at my mom and said lexi doesnt have autism what she has is sensory problems and adhd. first of all my daughter was diagnosed by a developmental dr who spent 3 hours evaluating her and said she has autism and sensory integration disorder. she also was diagnosed by the disability doctors and an autism specialist that works at the school she goes to. so for her therapist to say she doesnt have autism is plain stupid. they dont see how she acts everyday. they dont see her meltdowns and everything we go through with her. i agree she has sensory problems but everyone can see she also has autism.

2 things i learned today

well i learned a valuable lesson today. when lexi is sleeping and wakes up crying momom over and over again something is really wrong. well i knew something was right when she started whimpering but when i went in there and she started crying momom i knew and less than a minute later she progetile vomited all over the place. and the 2nd thing i learned is one since she cant really communicate she was scared cuz she didnt know what was going on and started screaming cuz the vomit was touching her. so i put her in the bath and she screamed even louder and starting freaking out cuz the stuff was in her water so i had to turn on the shower to clean her. so tonight was a learning experience

updates

last week lexi started school. when she saw the bus she took off running away from me and away from the bus aide. but after that she was fine so not sure what the problem was. she had play therapy this week and as i was talking to her play therapist i mentioned that lexi is on vivance for adhd. she looked at me and said this little girl doesnt have an attention problem. she said yes lexi is immature but doesnt want to sit for more than 10 minutes but its because she has sensory problems and is sensory seeking. so she is writing lexis dr a letter to tell her she doesnt have adhd.she gave me some ideas on how to handle lexi when she has a meltdown and iv tried it and so far its helped a little bit. she just started speech and im anxious to see how much we can improve with talking

finally a phone call

so a week after i called lexis dr they finally called me. only to tell me that 1. her meltdowns are normal and are mostly sensory so just deal with it and talk to the OT and 2. as long as shes getting some sleep its fine cuz they cant do nothing but give her melitonin and since that 'work guess i gotta deal with that.but i really want to know how it is OK for a child to have sleeping habits of a newborn and it be OK. when i say sleeping habits of a newborn i'm talking getting up every 2-3 hours. i just want a night of uninterrupted sleep. also she is no longer eating all that much. she hardly touches breakfast and dinner.

overwhelmed

i called Lexi's developmental ped on tuesday and they never called me back. so i'm guessing once again i'll have to call them again and see if they can tell me what to do about Lexi's aggressive behaviors. shes still having meltdowns everyday and now all she wants to do is eat. its a good thing but all shes eating is cherrios and those are not the healthiest food out there. Her sensory issues are still out of wack. she still only wants to where clothes once in a while and wants to be unclothed the rest of the time.

just to get it off my chest

the more meltdowns lexi has the harder it becomes to even deal with it. like this evening she took off her clothes tried to get her to put something else on nope she only wanted socks. ok then i make her chicken nuggets and she eats about 8 of them. i go to make my own food now she wants my food too. here comes another meltdown. so i fix her some of my food she eats. and throws the rest of it at me for no reason. i tell her no and tell her its time for bed so she starts picking up her stuff to launch at me. i again tell her no pick her up and she starts screeching. finally i turn off the lights and tell her hey your do u want ur remote and she takes it and goes to sleep. what the heck is going on with her i want to know. everything is a fight with her. keeping clothes on her is like a chore all on its own.she will take the clothes off but wont put anything on and she has to be able to get into her drawer or she gets mad. the only thing i know that has set her off into epic meltdown mode is her pacifer. i just wish i knew how to stop her because 1 i am going to go crazy and 2 she is going to start school next week and she needs to not have meltdowns all the time. and ever since shes gone into meltdowns everyday she wont go to bed until after 930 or so even when i give her melitonin. so im going definitly call tomorrow cuz i think they need to tell me what to do to help her

more meltdowns

so ever since i took the pacifier away from lexi it seems the meltdowns come more and more often. like on saturday i ran down to the gas station and left her with my mom well she went into an epic meltdown because she wanted to go and i didnt take her. it was easier leaving her with my mom than taking her with. and sunday morning she had a few more meltdowns over odd things. im thinking i really need to call her developmental dr and see what we can do because its really getting hard to control her when shes in meltdown mode. im proud of her though cuz tomorrow will mark one week of giving up the pacifer.

meltdowns

lexi just had an hour meltdown and nothing i did worked. she kick, pulled my hair, banged her head with mine, threw stuff at me and screeched the whole time. only thing i can figure out that set her off is she wanted to take her clothes off and her pull up. i allowed her to take her clothes off but not her pull up and she went into a horrible meltdown. and of course when i couldnt get her to calm down i started to cry myself. the only reason she stopped was because of dora the explorer came on, if it wasnt for dora i think we would still be in meltdown mode. i really want to know what goes on in her head and i want people to understand why she does it. everyone thinks i should spank her and ignore her but spanking just pisses her off a hell of a lot more and ignoring her just lets her tear up my stuff or my moms stuff. i wish her dr appointment was sooner and not next month because i think the dr needs to get her a behavior consult or something. her hurting me is bad and i feel like a terrible mom because i don't know how to get her to stop.

hi my name is autism

My Name Is Autism Hello. Allow me to introduce myself to you. My name is autism. Perhaps you know me or know of me. I am a condition, "disorder" that affects many people. I strike at will, when and where I want. Unlike Downs Syndrome or other birth "defects," I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a child's life, while leaving him or her strikingly handsome. Many people may not even know I am there. They blame the child for what I cause him or her to do. I am autism and I do as I please.

I am autism. I strike boys and girls. infants and toddlers. I find my best victims to be boys around the age of 2, but any child will do. I like children and they are always the true victims, though I take hostage the others in the child's family as well. It is a bit like getting two for the price of one. I affect one child and "infect" the entire family.

I am autism. I strike rich and poor alike. The rich combat me with education and therapy. The poor shut their children away and cannot afford to fight me. I am able to win in the lives of poor children more than I am those of the wealthy, but I will try to take root anywhere.

I am autism. I am an equal opportunity disorder. I strike whites, blacks, Mexicans, Ukrainians, Russians, Poles, Slavs, Japanese, Koreans and Fins. In fact, I strike everywhere on Earth. I know no geographical bounds.

I am autism. I do not discriminate based upon religion either. I strike Jews and Christians, Muslims and Buddhists, Atheists and Agnostics. I do not care what religion a person is or what beliefs he may hold. When I strike, there will be little time for any of that anyway. When they find me, they will question everything they believe in, so why would I strike only one group? I have affected followers of every religion on the planet.

I am autism and I am strong and getting stronger every year, every month, every day, every minute and every second. I am concerned that money might be allotted to combat me and my takeover of children, but so far, I have little to fear. Some countries like Kuwait , are spending quite a bit of money to assist those who I have targeted and some, like the United States , would rather spend money on such ludicrous things as discovering the number of American Indians who practice Voodoo, as opposed to combating me. In an atmosphere such as that, I can flourish and wreck havoc at will. In places such as that, I rub my hands with glee at the problems I can cause to children, their families and to the society at large.

I am autism. When I come, I come to stay. I take the dreams and hopes of families and trample them with delight. I see the fear and confusion in the eyes of my victims and see the formation of wrinkles, the worries and pain on the face of their parents. I see the embarrassment their child causes because of me and the parents unsuccessful attempt to hide their child, and me. I see tears the parents cry and feel the tears of their child. I am autism. I leave sorrow in my wake.

I am autism. I taketh away and give nothing but bewilderment and loathing in return. I take speech and learning. I take socialization and understanding. I take away "common sense" and, if I am allowed to flourish, I take away all but their physical life. What I leave behind, is almost worse than death.

I am autism. I fear nothing except courage, which I thankfully see little of. I fear those who take a stand against me and attempt to fight me and bring others into the fight as well. I fear those who try to make it safe and easier for my victims in the community, and their families. I fear those who push ahead, despite the fact that I am in tow. I fear the day I will be eradicated from the planet. Yet, I do not fear too much right now. There is no need.

I am autism and I bet you know me or know of me. If you don't, you probably will soon. I am marching forward faster than I ever have before. I am looking for new children all the time. I am looking for new children to consume and new lives to destroy. I dread the day I will be looked upon with pity or worse yet, understanding, for that day, is the day I will begin to die.

But in the mean time I am safe, free to prowl onward. Free to cause the pain and suffering that I do so well. I am on a mission and have much work to do and thankfully no one is stopping me yet.

Hello. Allow me to introduce myself. My name is autism. Perhaps you know me or know of me, if not don't worry, you will meet me soon.

what a month

first of all lexi is now getting occupational therapy which is going ok. i don't see any improvement but i guess i can't expect such a huge change so fast. we did find out at her doctor appointment that she has allergies to gluten and to milk so now she is on a gluten and casien free diet. i have to see the dietician to figure out how to do the diet cuz its hard to do. she will get speech here soon they just have to get the approval with medicaide. i'm excited for her to get speech so she will start talking more. a big and exciting thing is lexi is finally weaned off the pacifer. i decided that i was just gonna take it and she threw one heck of a fit but the after the first day she doesnt ask for it all that much. she does however have more meltdowns because she doesnt have it anymore so we will have to see what happens once shes used to not having it

update

i know its been awhile since i last posted my bad lol. since then lexi is now on a different kind of medicine for her adhd. she also starts occupational therapy next week yay. finally they are willing to help her. also she is now saying her colors and knows what they mean

dr appointment

On tuesday i was asked to bring lexi into the doctor so we could try her on liquid ritalin to try and help her calm down and learn better. I really didn't want to put her on medicine because i know the side effects and know that in time they sometimes stop working. but i did it anyway. so we gave her the first dose in the office and waited a half hour. the dr came back and told me to read to lexi. she sat there and listened to 3 books without moving and actually found the object when i asked her where it was in the book. the dr then gave lexi a puzzle. and not that easy of a puzzle it was one that has the hands. lexi sat there studied the pieces and put them in there place and never once got mad and tried to throw them or walk away. i know its too soon to say hey its working but when she actually sits and does a puzzle by herself when before she needed help i think its something to think about. also on tuesday her doctor told me about a study that is going to be going on next friday and they want lexi to participate. the study is on seeing how she learns and what the best way is to teach her. so of course i'm going to take her cuz im curious to see how she learns. and finally i got the call about the play project and she will start that may 5th. im excited because they said the waiting list was a year and they got her into it in 2 months.

feelings

someone once asked me how do you deal with Lexi having autism? well you just deal with it. Don't get me wrong its hard sometimes, especially when she is meltdown mode and you have no idea what is causing her to have meltdowns or how to get them to stop. but i deal with it because she is my daughter and God gave her me because he knew i could handle a special girl like her. i just wish everyone could understand her like i do. people say i'm spoiling her but i'm just trying to keep her going into a meltdown. people need to stop thinking shes dumb or doesn't know what people are saying just because she cant talk. she is a very special little girl and is very smart. she knows what your saying and understands it. she just cant communicate with the rest of the world. i guess my mission now is to teach people about autism and raise awareness. everyone should know it can happen to anyone from your family and you shouldn't be quick to judge the parents.

the diagnosis

I took Lexi to her doctor for her 2 year old check up. At that time i told the doctor what i suspected and she did the m-chat. the m-chat is a quick little test to see if they should be evaluated further for autism. She scored high enough and was referred to a developmental pediatrician. We went to see the developmental pediatrician in august 2010. She started off asking me questions about Lexi's development and how she developed as a baby. I told her how she developed and my thoughts. We then moved out into the hall where she closely examined her and watched how she ran, how she acted with kids her own age. The evaluation lasted 3 hours but when it was all said and done she diagnosed Lexi with classic to moderate autism, sensory integration disorder, behavior disorder, and hypertonia. The doctor said that she is functioning at a 18 to 24 month old. she has a vocab of about 10- 15 words. When i heard she has autism i was in shock and didn't want to believe it. Mostly because i really just wanted to think she was just a little behind and would catch up. Now i accept it and want to do whatever i can do to help Lexi. My hope is she will be able to talk like other kids but if not thats ok because she is truly an amazing child.

the beginning

where to even begin. i decided to start a blog to keep up people up to date on lexi's journey with autism and to share my thoughts and my feelings. lexi was born on feb 19th 2008. she weighed 5lbs 120z and was healthy. my first clue that something wasn't right was when she didn't want to eat when she was born. then she did. then when she should have been lifting herself up she was slower at it but i never thought anything about it. i tried to feed her baby food at 4 months but all she wanted was formula. so i didnt pressure her to eat baby food until around she was ready at 8 months old. she started walking at 13 months and starting saying a few words. a few months later i decided to say something to her pediatrician because she wasn't talking like she should be. so they referred her to first steps and put her with a developmental therapist. during her time with her developmental therapist we started noticing changes. she started banging her head on the floor, having really bad meltdowns, losing any words that she once had and she started acting like she wanted to be a little baby again. so my mom went searching on the internet for clues as to what might be causing lexi to do this she found the term autism. i freaked because i had only heard of sever cases and i knew she didnt have the most sever case. so i did some searching on my own. i finally looked at all the symptoms and said yes i think she has it and took her to her dr.