Monday, December 31, 2012

good bye 2012

well so much has happened in 2012. lexi has had tons of doctor appointments and only 1 hospital admission which turned out nothing was wrong. we thought we would get answers to what is going on with her in february but nope we are still searching. she has made progress with her speech but she is still very delayed. she got the diagnosis of apraxia which explains alot about her trouble with speech. good things that happened is she transitioned from my room to her room and into a twin size bed. she also learned how to ride her bike and sign please thank you and help. her anger issue is still a problem but shes finally getting behavior help. another big thing is she started daycare and has done really good with it. my goals for next yr is im praying we get answers with the genetisist and for me to lose weight and get fit. so heres to a new year and a new beginning

Friday, December 28, 2012

video eeg/christmas

Christmas was ok. spent time with family and lexi ended up being in a grouchy mood so i had to deal with that.actually im still dealing with her grouchy ness and she doesn't want to sleep at night for me. i called the neurologist because she has started this rapid eye blinking here in the past couple days and they now said they are going to set up a video eeg. i honestly doubt they will get anything on the eeg because really i never know when she is going to have a seizure. and the blinking i believe its a tic that she has now developed. my guess is they will not do anything about her not taking her meds since they want her to have the video eeg. i dont understand doctors around here at all. i mean do they honestly think they are gonna keep lexi in a room for 24 hours with leds on her head. i doubt it because i know how she acts. i may sound negative but i honestly don't try to be but i know how my daughter is and i know how she will react because everytime we have gone to the hospital she acts the same way. i'll just be praying they catch something so they can help her out. i have no idea why my pics are on top instead of underneath this update but there are a few pics from christmas and her field trip she went on.

Sunday, December 23, 2012

maybe g-tube

well the nurse practitioner called me back friday afternoon and said there's really no other solution to lexi not taking her meds. I of course got frusterated and asked her how in the world is it safe for my daughter to be able to continue to keep having seizures because she wont take her meds. she said that they are not used to kids who flat out refuses meds like lexi and that the only option is to either find a new speech therapist who works with oral adversion or do something drastic like an iv or g tube. im so ready to say just do a g tube because lexi isn't overcoming her sensory issues in her mouth and plus the fact that she has horrible behavior issues it just makes sense to not fight with her any longer. im sick and tired of doctors not wanting to deal with my daughter because shes difficult. how can a doctor even do that. and its not just her neurologist or the nurse practitioner at the neurology center. its the sleep doctor who refuses to order a c pap because he doesn't want to deal with her not wearing it. how can that even be right. shouldn't she at least have the chance to get a good night sleep. she has central apnea and obstructive apnea to where she stops breathing but because shes difficult they don't want to give her the good night sleep she deserves. i just pray they do something about her meds. she needs to have her seizure meds and she needs sleep

Friday, December 21, 2012

so frusterated

Lexi refuses to take her medicine. Her speech therapist finally got her to take it but it took her over half an hour to finish it and who knows how much she got. I'm gonna try calling the neurologist in a few and hope they are open so that maybe they can figure out what to do. Shes not sleeping and her anger issues and yelling is really increasing. I'm about to just say put a tube in her so we know shes getting her medicine. I'v tried ever way imaginable to get her to take her meds and she wont because of her behavior issues and her sensory issues. I'm tired of doctors not really caring if she takes her meds or not. I mean really is it safe for her to keep having seizures because she wont take the medicine. not really but it seems like doctors just don't care any more and don't want to deal with kids.

Wednesday, December 12, 2012

christmas time

Is it just me or does it honestly not seem possible that it is almost Christmas time. I know we are already 12 days into December but honestly it doesn't seem possible that Christmas is only 13 days away. I put our tree up in the middle of November but I'm not in the mood for it. It would help if we had snow but its so mild here its not funny. We set a record for going over 265 days without snow. People think I'm crazy for wanting snow but I think if it snowed a little more it might make it seem more Christmas like. Another thing is why do people now say happy holidays it Christmas not holidays. Christmas is Jesus's birthday and he is the reason for the season. Do you have snow where you are and if so how much?

Friday, December 7, 2012

neurology appointment

so yesterday i took lexi to her neurology appointment. it only lasted 10 minutes and that was basically to say that they didnt know any other ways to get her meds into her and they would look to see if they could get her into feeding therapy or something. i just wish it wasnt a fight to get her meds into her. she needs them otherwise she will have more seizures. next week we start back with ot and then have speech afterwards and her speech therapist wants me to bring her meds to try and work with her to take her medicine. i dont understand why everything is a fight with lexi.

Friday, November 30, 2012

sickness and everything in between

since i last updated lexi has gone to the doctor twice and been sent home from school once. her being sent home from school was my fault because i knew something was wrong with her but i still chose to send her.turns out she had a grand mal seizure when she was sleeping and it took her a while to come out of it. now on i know not to send her to school if shes acting that way. guess its just one of thoses times you learn the hard way.hard to believe that november is almost over. lexi has an appointment with her neurologist on the 6th so ill update then unless something else happens before then

Monday, November 19, 2012

we got a date and time for genetics

yay after a few months of waiting for a referral to neurogenetics down at rileys today they finally called me. we go down february 22nd at 8 in the morning. my thought is we will most likely spend the night down there the night before since its early. im praying we get answers for once but we have 4 months to wait. im excited though lexi is doing ok shes out of wack since she didnt have school last week. she needs structure like at school all the time but its impossible to do that.

Friday, November 9, 2012

what im grateful for

i feel the need to blog about what im truely grateful for. i know some people are doing a whole months worth of gratefulness but i'm different and want to do mine different. first of all im grateful i have a loving God who has given his one and only son to die on the cross for our sins. second im blessed to have a wonderful mom who is not only my mom but my best friend as well. im also blessed to have a wonderful daughter who is amazing and sometimes difficult but mostly amazing. the thing im really grateful for is that my daughter is healthy and is able to walk,talk and eat. yes she has disabilities but i'm grateful that the thing in her brain is not cancer and that shes not having to go through that. im also grateful that her seizures are far and few and doesnt control her life. im grateful that she is very healthy. so now one more thing before i go please pray for isaac steiner. hes a 7 yr old boy who was given clean scans in september but thursday morning he woke up not being able to walk and they did a mri and it was shown his cancer is back

Thursday, November 1, 2012

Halloween pics and lexis new stroller

We had a great halloween this year besides the fact that it was raining and cold. Lexi was a ballerina monkey which fits her personality very well. Everyone calls her a monkey so it just fit. We went trick or treating in town and got lots of candy. Lexi was scared of the people in masks though poor girl. Other news is we finally got lexis new stroller. Its called an eco buggy and it sits up to 110 pounds. I like it cuz now she actually will fit in the stroller and I won't have to carry her




Saturday, October 27, 2012

medicine changes

i think i finally got all lexi's medicine changed to pill form and wow its so much easier to get her to take her meds with them being in pill form. although i have to go back to cvs to get 2 more of her prescriptions because her doctor didn't tell me she was switching her last 2 meds to pills until last night at 8. i think just this week iv been to cvs now 3 times and probably a 4th time if they dont refill her one prescription today. im proud of her though for being able to take her meds like a big girl now. one thing that is very concerning is her loose stools. it seems like she goes alot here lately. her doctor said to move her medicine to once a day instead of twice a day but that worries me because shes been sleeping better now since taking the med twice a day. i posted a pic of the amount of meds she now takes. minus the one med we are waiting for a refill, her melitonin she takes at night and her daily vitamin she takes.



Monday, October 22, 2012

Pictures from my phone




friday's appointment

we went to rileys on friday and saw her endocrine doctor. first of all i have to say he is a really nice doctor and we are lucky to be able to see him. he actually apologized for not being able to see her when lexi was admitted in april. how many doctors apologize because they are not on call. not many around here. everything is going good shes actually growing now which is a good thing because in april when she was admitted she actually was only in the 10 percentile and now she has caught back up so hes not worried anymore. also when i gave him the test results from the testing the doctor up here did he wasn't to happy because he said the doctor up here did un neccessary testing on lexi and next time they want to do any endocrine testing he wants to be called first. he said he was gonna do some blood work but since they did unneccesary blood work that he wont put lexi through that until june when we go back. so thats a good thing now we dont have to go back down until january when we have an mri.

Sunday, October 14, 2012

dare i say

since friday night lexi has started sleeping mostly through the night. i say mostly because last night she woke up crying at 3 but i was able to give her a cup of milk and she went on to sleep until almost 8. so is it a fluke or is the medicine actually helping. we are really not sure but ill take what i can get. the good thing about this med she is on is it gives her another medicine to control seizures plus help with the central sleep apnea. i'm in the process of getting most of her meds switched over to pill form because it seems lexi likes taking pills rather than take it in liquid form. i let lexis dad come over and visit with her. it was the first time he has ever told lexi he loved her and gave her a kiss. so sweet for once. i guess the lady hes in a relationship has done him good lol.

Thursday, October 11, 2012

new medicine

so yesterday we went to the developmental doctor. we ended up spending over 2 hours there and really it was stressful. the doctor came in and asked me to draw up lexi's medicine and then proceeded to hold lexi down and give her her medicine. the doctor said i must give her her medicine that way because there is no other option. then i asked the doctor what about her sleeping issue and the doctor said she could sedate the crap out of her but with her central sleep apnea that would be very bad to do. so they put her on acetazolamide which is suppose to help her blood flow in her brain or something like that. she has to take it once a day for a week and then move up to  twice a day. i asked about her getting into stuff when she wakes up so they said for her safety i need to shut her door and put a child lock on it so she can't open the door until i wake up. she woke up at 430 and stayed in her room until i got up so i guess it will work for now. i guess it was a good appointment and i will be trying some of the stuff that they mentioned

Monday, October 8, 2012

i need sleep and maybe nerve pills

ok so the sleep i most definetly need. but the nerve pills i probably could go for as well lol. lexi is still getting up at 3 every single morning no matter how late i put her to bed. seriously shes like the fricken energizer bunny she goes goes and goes some more. honestly i dont know how she does it. and once shes up she gets into every single thing. i mean if she got up and watched cartoons that would be somewhat ok but no she has to get into stuff she should not be getting into. and her attitude is worse than a teenager. she screams about everything. i need a vacation for real no joke

Sunday, September 30, 2012

pictures

so nothing new has really happened in the two weeks. the only really major thing right now is that im waiting on her doctors nurse to call me back with a solution to having lexi take her meds. she fights like no other and then spits them out. before you ask i have tried putting it in her drinks but she takes one sip and refuses to drink any more. don't ask me how she knows but she does. i'v also tried it in her food but if i try to get her to eat then she refuses and then i end up wasting food and medicine. i even thought if i rewarded her with a treat afterward it might help but nope she still spits it out. she doesn't just spit it out for me either. she spits out the meds for anyone. drs nurses and her grandma as well. so now i really have no idea how they are going to get her to take the meds. right now she has a cold and hasn't been sleeping really well at night. she goes to bed fine but then once 3am comes around she gets up and gets into every single thing you can imagine. i had to search for my glasses cuz she hid them from me. but other than that shes gone on a field trip and is going again on friday. well have a great week and hopefully i hear something back soon from the doctor








Wednesday, September 19, 2012

school, dr appointments and referrals

lexi has been doing really well in school. she's getting back to herself this week after a very off week last week after her seizure. shes still weak on her left side but hopefully that will get better as well. we had her appointment with her developmental pediatrician and that was the fastest appointment we have had with her. we got there at 1030 and was out at 11. the doctor came and got us and said that she wanted to make this very fast and easy because she understands that we spend alot of time in doctor offices so she didn't want to make us stay longer than necessary. i told her that lexi has started having seizures again so she got the blood work from her neurologist and increased her keppra to 3 1/2 mls twice a day. then she is referring us to neurogenetics down at rileys and most likely the sleep clinic down there as well since the sleep doctor there in the office doesn't want to help figure out how to get lexi's sleep apnea under control. she also is calling her neuro surgeon since lexi did have another seizure and is now weak on the left side to see what she says and to let her know what is going on. lots have been going on but i think we now have a routine going. just hope the keppra rage stops soon cuz i honestly didnt think that increasing the med would set her off that much but it has.

Tuesday, September 18, 2012

look whos learned to ride a bike with training wheels

yay lexi finally learned how to ride a bike with training wheels. its very big news since it took her a long time to learn to ride a tricycle. i have more updates coming soon but i wanted to share this video first.
video

Tuesday, September 11, 2012

seizure

well of course i just had to jinx lexi and she had another seizure on sunday.we have no idea what caused it although it happened when she was sleeping. the doctor ordered a keppra level and we will most likely increase the dose to hopefully get the seizures under control again. im upset because it was almost a year free.

Friday, August 31, 2012

can we have a repeat please

so yesterday lexi had school and then speech and physical therapy. her behavior consultant met with us at the therapy center and wow wow wow. it was a totally different experience. for the first time in over a month lexi sat down at the table never screamed for me and did everything that kristin wanted her to do. she worked very hard and i am so glad. she did get upset when her behavior consultant left the room but once he went back in there she calmed back down and started working again. we believe that maybe lexi just isn't ready to be by herself with another person and thats why she is crying for me when i leave the room. we know its not a trust issue so thats good. the bad part though is because shes been screaming and not working these last few weeks shes now regressed and her speech has gotten worse. so we are hoping that once we figure out her problems and get her working hard again she will begin talking alot. she also did very well with physical therapy as well and everyone was very proud of her. i am so very proud of her for how she did yesterday because i knew she could do it.the biggest thing right now is at home she is getting into everything and misbehaving for my mom. its like shes going through the terrible 2s again. i hope it goes away though lol.

Friday, August 24, 2012

it takes a village to raise a child

i have heard over and over again that it takes a village to raise a child. i truly agree it is like that when you are raising a special needs child. not everyone understand what you are going through but you need all the help you can get. that being said you need to not only have someone to help physically but also emotionally. when raising a child with a disability you need someone who you can go to and just talk to without being embarrassed or having someone be very judgemental towards you. also when raising a child with a disability you have to know there is going to be lots of errors when your raising your child. you wont have a magical fix so to speak when teaching them how to learn or to talk. you have to be very honest and know that you will have to keep trying and switching ways to teach them. if you try one way and it doesn't work then try another way. in no way am i saying that i have all the answers because i certainly don't. i had lexi's behavior therapist sit down with me and we had a hour long talk brainstorming and trying to figure out how to help lexi. i told him about her behaviors this week and he agrees shes trying to tell us she is done with something. is she stressed out because she doesn't see me enough. probably but does that solve everything no. is she tired from not getting good enough sleep. it probably wouldn't hurt for her to get more and better sleep. we also are looking at is she just having too much speech/occupational/physical therapy that maybe she needs a break. maybe she is so now we need to determine if we can stop therapies right now without major regression. i just want the best for lexi and thats what we are working towards. my goal right now is to get her to where she can live independently on her own when she is over 18. i have to be realistic when i set goals for her because only God knows what lexi is capable of and what her life will turn out like later in life. as long as she is happy and healthy so am i.

Friday, August 17, 2012

school

so to get lexi ready for school it wasn't very hard. she will be going to the special needs preschool again this year and she will also be starting at the speech therapy and resource class as well. she will ride the bus to and from school with an aid on the bus. this year she has a morning bus driver i had as a senior in high school and she also has the same bus driver as last year in the afternoon. the biggest change this year is she will be sent applesauce everyday since she has a gluten allergy. not that big of a deal but it makes me mad when they feed her something with gluten in it. she will also have ot and speech during school as well. we do have a  plan in place in case she has any seizures but i don't for see any happening again. shes almost a year free from seizures yay. so thats basically what i did to get her ready for school not that big of a deal

some progress

so for the past month i have not been going in with lexi while she does her therapy mainly because she doesn't work as hard as when i'm not in there. last week was a fail and this week she only had physical therapy. she cried for me during the whole hour but tricia said that lexi did everything that tricia asked even crying. big improvement from last week. our hope is when she realizes that she can not control the situation that she will stop screaming and scrying and actually start working harder in therapy. that being said today she told my mom's dog to sit down. a two word phrase that i could actually totally understand. my mom even heard it as well and we both were excited. she also started school today. she will go 3 days a week for the next 2 weeks and then on the 5th she will start going all 5 days. i think it will be good for her since she needs the routine and the fact that she has to be separated from me i think will help her. she also starts behavior therapy soon as well. im praying it helps calm her fits down because when shes throwing a fit its very hard to get her to stop. hope everyone has a great weekend

Saturday, August 11, 2012

epic fail

so we went to do the sleep study and lexi refused to let the nurse put the leads on her head. so we talked a little bit about how we now have to wait to see what the doctor wants to do. my thought is there is no way we are going to get a c pap on her so why even bother. but then again if we don't get a c pap then we cant get her medicine for her anger issues. such a vicious cycle. the nurse was nice enough to tell me that during lexi's last sleep study she had 46 central sleep apneas and the longest lasted 20 secs. then besides those she had 10 half obstructive sleep apneas. the obstructive probably is no longer a problem since she got her tonsils and adnoids removed but now we have to figure out how to get the c pap so her sleep apnea gets better. i really just want them to leave her alone and stop messing with her. its so frusterating because she needs the stuff done but she gets so angry when doing anything. and then when she gets angry i get very overwhelmed and stressed. guess i will be on the phone with the doctor on monday to see what they want to do.

Friday, August 10, 2012

ready to pull my hair

sometimes i wish i could pull my hair and make everything be ok. yesterday was beyond horrible. we went to therapy and she screamed all 2 hours. and i mean hitting,trying to run out the door, biting the wall, knocking the chair over kind of horrible fits. what it comes down to is she doesn't want to listen to her therapists and wants me to do the work instead of letting them help her. so in order to get her to let them work with her iv started to sit out in the hall but then she acts like this. hmm hopefully she will learn that no matter how many times she screams and throws a fit they are not giving into her. that being said her therapist told me yesterday she needs meds because something is wrong in her brain. let me tell you that is not what i wanted to hear and i could have just started crying or walk out. i was tempted as my nerves were shot by then. oh and on top of it all i get a phone call to come in tonight for lexi's sleep study with the c pap. anyone want a fun night lol i can now just picture how tonight will go. pray for my sanity and the nurses sanity while we are there.

Friday, August 3, 2012

long overdue update

July came and gone and now its August. lexi has been very grouchy here lately. on the 25th she had her mri and met with the neurosurgeon who she decided to scream at and try to hit and bite her. that little temper tantrum earned her a visit from psychiatry. psychiatry said that she needed help so now we are going to have a behavior therapist come out to my home and work with her. I'm praying it helps cause otherwise i don't know what else to do. shes out of control. shes been screaming biting hitting. its getting out of hand. yesterday she screamed the whole hour for therapy so she didn't get speech therapy. then at the doctor's she tried to bite the doctor again. the doctor did decide to try her on vivance again for  her adhd to see if maybe she will calm down a little bit. we will see. well ill update again soon

Tuesday, July 10, 2012

having fun and getting sick

last week was the most fun i'v had in a while. i had the week off of work and got to go swimming and spend time with my family and lexi. we went and saw fireworks on the 3rd which was a awesome show. it was very hot last week and i got sunburned bad but it was still fun. on saturday we went to silver beach and played in the lake. lexi got daring and started jumping in the waves and actually let go of my hand a few times. i don't know what the differnce is between the lake and the pool but i think she had more fun in the lake. we went to the flea market as well last week which was fun to look around but i could go broke buying things there lol. i did happen to find me a good deal on bras and a nice shirt while i was there. lexi got a toy guitar that she is having fun playing with. the only bad thing about last week is we both have a cough that just wont go away. iv never gotten sick in the summer but i guess theres always a first for everything right lol. i just hope it goes away really soon because its annoying. lexi is finally getting her new smo's on thursday about time since its been over 3 weeks since we got fitted for them.

Wednesday, June 27, 2012

update

we went to lexi's developmental appointment on tuesday. she is 34lbs and 39 inches. the doctor talked to the  sleep specialist and on friday we are going to go pick up 3 different c pap masks to get her used to wearing a c pap. then in 2 weeks we will have a sleep study/eeg with her using the c pap. i asked if we could increase her  reperdol but they said they want her central sleep apnea fixed first before they do anything with her medicine.the doctor also wants her in aba therapy but the school that offers aba costs 5 thousand or more a year and there is no way i can even begin to pay for the school. i'm gonna look up the therapy method and see how they do it so maybe i can work with her at home. she just needs some behavior help but there is none unless you have insurance which i don't have. she has mediciade which makes it harder to get aba therapy

Sunday, June 24, 2012

before i was a mom

before i was a mom i never knew what autism was. i heard of autism but i honestly didn't know what it was. i thought it was only a disorder boys could get and that they only flapped and didn't acknowledge anyone around them but now i know different. before i was a mom i never had to worry about seizures or what to do if someone is having one. now i know what to do. before i was a mom i never road in an ambulance but now iv rode in an ambulance 3 times. before i was a mom i had never been to the hospital as many times as i have since iv had lexi. now we go to the hospital every 3 months for an mri. and we have unexpected admissions. there are alot of things that iv done for the first time since iv had lexi. some good and some bad. but she is my world.

Sunday, June 17, 2012

going gluten free

well i decided that i'm gonna have lexi go gluten free again. mainly because she does have a gluten allergy and the doctor wants her to be on a gluten diet but also because maybe her behaviors are because of her gluten allergy. she can't tell me she doesn't feel good so whos to say she doesn't get mad and act out because her stomach hurts. so i'm gonna try my hardest and make sure everything she eats are gluten free. i went grocery shopping and found her these granola bars that she absolutely loves. they are organic and gluten free so its a win win for her. and another thing she likes is the quaker rice cakes. i tried them and they aren't that bad. shes really doing good with eating what i tell her she can eat. if anything i'm making her alot healthier so its a really good thing for me to do this. i'm just hoping i can stick to it

Thursday, June 14, 2012

look how far shes come

i'v been thinking about how far lexi has truly cam in just a short time. like when she started preschool in february 2011 she had to take a sippy cup of juice and had to have her pacifier with her. she got rid of the pacifier in august and learned how to ride a tricycle in february.  shes also not having as many meltdowns as she was but they are still there. as for potty training i have no idea when she will be potty trained because she doesn't care if shes wet or poopy. iv even tried just putting her in underwear instead of pull ups and she still pees in them. i was hoping she would be potty trained by this summer but its not looking like its going to happen. talking is coming along good. she has apraxia and articulation problems but shes saying more words not clear but you can understand some of it. shes using the i pad and shes actually starting to copy what they say so maybe an i pad was a good idea for her. i sure hope so. the one thing she still hasn't progressed with is fine motor and social skills. i need to talk to her ot and see if we can do more fine motor work because i was watching her use a spoon to eat and she can barely get the food in her mouth. as for social skills she runs away and hides from kids. she doesn't like to even talk to a child her age. she will however interract with a grown up just not kids. it makes me sad that she has no real friends and don't want to play with other kids. autism sucks but shes an amazing little girl

Thursday, June 7, 2012

meet lexi's physical therapist

this is tricia. lexi has been seeing her for 6 months. shes the one who taught her how to ride a tricycle and is helping her use her core muscles. she makes lexi work and isn't afraid to act goofy to get lexi to do the things she needs to work on. lexi sees her once a week after speech therapy and we will miss her when lexi completes all her goals.

Wednesday, June 6, 2012

shes smart? your kidding right

what really aggravates me is when we go places and I tell someone that Lexi can't communicate very well and they act like she's dumb. In fact Lexi is very smart. She understands everything you say and will follow any direction that you ask unless shes being bull headed but thats just her. I also dislike when people start to curse in front of her and I tell them to watch their mouths and they say oh well she wont repeat it. Just because she wont repeat it now doesn't mean she wont repeat it later on and when she does I'm coming after you. The classic thing i dislike people saying is oh she has autism she looks perfectly normal to me. Really tell me how a child with autism looks because they are normal they just learn differently and may not be able to verbally communicate with you. I think thats the problem with society now a days. they don't accept disabilities unless you look it. God created us equal why not treat everyone as an equal. Since having a special needs child I look at those with disabilities differently. I just hope lexi will see everyone as equals too and not judge them. i can at least hope right.

Friday, June 1, 2012

apps for kids that i like

as some of you know lexi uses the i pod touch to some what communicate but also to help when shes in the hospital or dr appointments. so i was thinking why don't i share some apps lexi has on her i pod and then you can share the ones you like. seems easy right. the first app i like is proloquo2go. its a talking app and is kind of hard to program to your child's need but once you do its easy to use. its expensive over 200 but its worth it in the long run. we have also used the talking app tap to talk as well that we like. an app she really like to play is called clean up:category sorting. its where they put toys,food and clothing where they are suppose to go. its free so its a nice app. lexi also likes the shapes toddler preschool, virtuaso free piano, and the color memory match. all three of these are free and are easy for toddlers to use. so what apps do you like and why?

Thursday, May 31, 2012

no sleep and regression

well its official lexi hasn't sleep besides 15 minute naps since before her surgery. we went to the doctor today and she told me to take lexi off all pain meds and see if that makes a difference. the doctor said there is no reason she should be in pain since her throat is healing just fine and her ears aren't infected. i don't know what to do because shes not eating and not really drinking and hardly sleeping. also since the surgery she has regressed and is no longer using the toilet even the little bit she was going. i really hope she starts using the potty again cuz shes already 4 and buying pull ups is expensive. well ill update again in a couple days hopefully with some news of her sleeping lol

Tuesday, May 29, 2012

oh boy

last night lexi stayed up from 12 am monday until 3 am this morning with only 5 minute naps here and there. she finally went to sleep and was up at 7 and again at 9. of course this is after i called the nurse on call and had her page lexi's dr who switched her to tylenol with codiene. you would think that would knock her out but nope it didn't and it hasn't yet. she did eat a hot dog and a marshmellow today. i know its not on the list for allowed food but my neighbor offered it so i figured why not. she ate it all. i think the worse part of this is that shes not getting sleep and shes not on her schedule and you know with kids with autism she needs a schedule. i'm so tired but she wont go to sleep. i now know if i ever have another kid i will refuse to have there tonsils and adnoids out because this is the worse iv ever seen a child act. well pray for sleep cuz i need it and i know she needs it

Sunday, May 27, 2012

update on how lexi is

shes doing ok i guess. shes eating a little more but still wont drink. last night was horrible she cried the whole night and there was nothing i could do to make her feel better. shes so tired today but refuses to sleep so i hope tonight will be a better night. on top of it all my tv broke the day of her surgery so today i went and bought me a new one. yup im proud to say say i now own a flat screen tv yay me lol. so how is everyones weekend going?

Friday, May 25, 2012

surgery went good

surgery went well. she went in at 8 and was out by 845. shes been very whiny and crying but otherwise shes doing good. i can't get her to drink but i did get her to eat 2 popcicles so that is a very good thing. i feel really bad for her but i think shes a tough little girl and will get over this really fast.

Thursday, May 24, 2012

lexi's surgery is tomorrow

surgery is tomorrow. we have to be at the hospital at 7 and surgery will be at 8:15 or so. i'm nervous but i have came to the conclusion to just fully rely on god. its a simple surgery and people have the procedure done all the time. does it make it any easier no. especially since lexi is a difficult patient to say the least lol. i am gonna pack a bag just in case but i doubt we will be admitted. people say she may do really well so we shall see. ill update after surgery. by the way shes still not asleep shes in her room laughing which is good i guess.

Wednesday, May 23, 2012

almost time

so Friday is lexi's tonsillectomy and adnoidectomy and i'm getting a little nervous, i know everything will go OK its the fact that she will be in pain and she doesn't like to take medicine that worries me. i got her some applesauce and some popcicles so hopefully that helps her. another thing if you read this blog please follow it or let me know your reading it.

Thursday, May 17, 2012

another diagnosis

well lexi's speech therapist miss kristin believes lexi not only has apraxia but she really believes she has an articulation disorder. An articulation disorder involves problems making sounds. Sounds can be substituted, left off, added or changed. These errors may make it hard for people to understand you.
Young children often make speech errors. For instance, many young children sound like they are making a "w" sound for an "r" sound (e.g., "wabbit" for "rabbit") or may leave sounds out of words, such as "nana" for "banana." The child may have an articulation disorder if these errors continue past the expected age. i swear at the rate shes going shes gonna have more diagnosis than i can count on my hand. 

what is apraxia

one of the diagnosis lexi has is apraxia. well technically shes global apraxic which means she just doesn't have oral apraxia it affects her whole body. 
Childhood Apraxia of Speech (CAS) is a motor speech disorder.  Children have trouble making speech sounds, not because of muscle weakness or paralysis, but because the brain has problems planning the movements needed for speech.  When it is most severe, children struggle to make sounds.  Children with a moderate or milder form struggle with syllables and words.The cause or causes of CAS is not well understood either.  It is a neurological disorder without any apparent brain injury.  Children seem to be born with CAS.  Hopefully, further research will be able to determine the cause or causes. now global apraxia refers  to motor planning deficits relating to arms, legs, fingers, etc. and “global apraxia” would be all of the above.  so there is a little about apraxia. 

Thursday, May 10, 2012

yay for an update

nothing really new going on except i bought lexi a trampoline for the house so she can get the sensory she needs. also im going to buy beans and put them in a tub so she can play in that as well. today during speech her therapist worked with some fine motor stuff. she got a thing of pudding and let lexi play in it. let me tell you she had pudding up to her armpits lol. her therapist said she never seen someone so messy before. also we are kind of at a stand still with potty training. she keeps going in her pants when she shouldn't. anyone have any ideas? let us know if your new to the blog as well we like to know how many readers we have
video

Thursday, May 3, 2012

stressed to the max

oh where to begin. i dropped my car off at the mechanic and borrowed my moms car so i would have a vehicle. well wouldnt you know her car broke so now i have my car back and praying it wont break down on me. i started to watch a 9 month old little girl and that didnt work out. lexi threw toys at her and spit on her. lexi also had a meltdown that lasted almost the whole day. when i say that i mean she screamed,cried, bit, threw things and was just very angry the whole entire day. that was very stressful. the doctor says she needs to be in social situations but how can she be if shes going to hurt other kids. i just wish she got along with other kids.  therapy went ok today. her therapist doesnt know how to help her. lexi is turning her voice off when the therapist asks to turn it on and vice versa and she said shes never met a child that did that. so now she has to try and find someone who has and see what they say about how to help her. one lesson i learned is lexi is far from a text book case. shes very unique

Sunday, April 29, 2012

mri/hospital visit

so friday we went to rileys to have lexi's repeat mri. after her mri we went and saw her neurosurgeon who i love. when dr ackerman walked in she looked at lexi and was like you look stoned from the general anesthesia. her mri looked good the mass is still the same size. however while we was there i mentioned that lexi drinks close to 90oz a day. dr ackerman then told me she would be right back and called endocrine. endocrine came down and went over her records and it was decided to admit her to be safe. they did testing for diabetes and that came back fine. the dr said its just in her head and i have to limit her drinking. so tomorrow im calling dr luzzi and asking to switch her medicine because i feel since we ruled out diabetes its her medicine making her drink. so we shall see what goes on with that. i do have to say that rileys is an awesome hospital and i do recommend it to anyone
waiting for her mri

in her room 

playing peek a boo with her nurse

finally asleep after a hard day 

the view from our room.

Thursday, April 26, 2012

i need sleep

the past couple nights have been exhausting. Sunday night/Monday morning Lexi decided to get up at midnight and stay up. i'm so not use to not getting barely any sleep. then on Tuesday she decided to only sleep a few hours as well as on Wednesday. then of course today she was up at 5 wanting to play. i believe its her medicine   kicking in because shes also very thirsty, needing to pee alot, and being very whiny. i'm glad that this week was her off week at school because i have no idea how she would make it through school with as little of sleep as shes been getting. i'm gonna say something to the neurosurgeon tomorrow to see what she says. getting kind of nervous for tomorrow but i know it will be ok plus my friend Lauren is going with me so that will be even better. maybe i wont snap on her like i did my mom when my mom took me down last time. lol well ill update you all tomorrow after her mri and neurosurgeon appointment

Sunday, April 22, 2012

random things

so i decided to make something new last night for dinner. i made taco salad with doritos which i thought was really good but lexi decided to take one look at it and start acting like it was chocking her. there goes my healthy eating lol. my friend is giving me a gorge forman grill so ill be making more delicious foods. if you have any recipes you would love to share i would love them because i'v been wanting to make different things and not just the same meals over and over again.
secondly how do you get this child to be potty trained. i thought for a while i was getting somewhere but now she thinks its funny to go in her pull up. shes still using the potty but she will intentionally go in her pants as well. so any ideas are welcome.
third thing iv been spring cleaning and getting rid of a bunch of stuff. i think i got rid of almost a trunk full of stuff and sold quit a bit of lexi's baby stuff and clothes that are way to small for her. i have no idea what has gotten into me but man i keep looking for more stuff to get rid of. well i think thats all for today

Friday, April 20, 2012

one week

we are one week away from lexi's mri and i am more nervous than ever. i know that she will be ok and nothing different will show up but it still worries me especially since there is so much going on with her and i have no idea if its her medicine or if theres something else going on. this next week will be hard but i will have to just have faith in god.

Thursday, April 12, 2012

when life throughs you lemons make lemonade

so we went to lexi's developmental pediatrician today and she told me to tell her therapist to stop using sign language. i'm very confused because she is using signs really well but her doctor wants her to instead use an i pad which she loaned us today. so i told the speech therapist what she said and she strongly disagrees with the doctor and feels like lexi should sign as well as try to talk. the doctor told me if lexi's therapist doesnt agree then we should find another therapist. however i think her therapist makes a good point at lexi learning sign. also the doctor feels she does have severe apraxia and thats what her therapist things so at least they agree there. also the doctor will be doing some research to see if there is any other genetic testing they can do to see if its causing all of this. finally to top it off her doctor has told me that they must do labs before lexi has her tonsils out otherwise something bad can happen cuz her meds cause her blood to be thin or something so they need to make sure its ok to do surgery plus her billirubin level was high the last time she had blood work done

Wednesday, April 11, 2012

signing

last week lexi's speech therapist talked to me about signing and we both agreed to start working harder on signing with her since she's still not communicating the best. but i'm not too sure how thats going to go because she seems to not be able to make her fingers do what needs to be done. i'm hoping she can get into signing but i'm not sure. tomorrow we go to see her developmental dr in south bend. hopefully this time she will be there and not make me have a phone conference with her like the last time. plus i have a paper for theraputic horse back riding that i need her to fill out for me. easter was good. she got playdough and some new books which she loves reading. she also got a very beautiful dress to wear and new sandals which made her extremely happy. only 16 days until we go to rileys. ill leave you with some pics from easter.



Friday, March 30, 2012

long over due update

lexi is doing good. shes riding the bike very well without any help at all. they did discover that her right leg is weaker than the left and she does tend to drag it when walking. so im guessing she will be having more extensive physical therapy on that leg. as for speech she's still not talking that well. i'm beginning to think i should have gone ahead and got the augmentative communication device a couple months ago. she probably would be doing really good with it but i guess you make choices that you wish would have been different. only 26 more days until she goes back to riley's for her mri of her brain and brainstem. kinda getting nervous just because who knows what the results will be this time.

lexis big girl bed

i decided it was time to move lexi to a twin size bed and allowed her to pick out her bedding herself. as you can see shes very happy in her new bed

Tuesday, March 6, 2012

central sleep apnea

we went today to the sleep specialist and it turns out lexi has central sleep apnea. what that means is she forgets to breath. they said her oxygen is normal but her carbon dioxide is really high. so now we have to get a mri of her brain stem and send her to a ent to make sure her tonsils and adnoids dont need to come out since she did have a couple obstructive apnea while we had the sleep study. then if everything comes out ok then we will try the c pap

Sunday, March 4, 2012

wonder what she is thinking

I always sit and wonder what Lexi is thinking. I mean since she can't communicate like the rest of us I wonder what goes on in her little head. I know she has a lot stored in her head and I know its just waiting to all come out. There are times when shes sitting down watching her cartoons and she just makes this face like shes really concentrating and taking every word they say in. 

Friday, March 2, 2012

dr called

so the doctor called me herself and said we have to see if her keppra level is fine. if its not the dr will up her dose and then we will have to have it checked again. then once thats achieved then she will put her on resipidol.

trip to rileys and anger issues

so yesterday we went to Riley's and it was a very quick eye doctor visit. everything looks ok with her eyes so we go back in 3 months for another visit. so now we have about a month and a half until we go back to Riley's yay. bad thing now though is Lexi's anger issues. she is getting worse with her aggression and i have called her doctor twice now but so far there is no answer to help her. just yesterday she threw 2 shoes at my friends baby and kicked my friend when she was trying to make sure she didn't throw anything else. but its just not that she hits children at school and beats my little brother up also. i think she needs behavior therapy but we will see what the doctors solution is.

Friday, February 24, 2012

you've got to be kidding me right

so yesterday was Lexi's appointment with her developmental dr. we got there right on time and waited to be seen. but wouldn't you know that the doctor wasn't even there. she was over an hour away. so the nurse called her and we talked on the phone. she said nothing about Lexi's anger issues. we also decided to start working really hard with Lexi on her talking app and see if that helps the frustration. i hope so because something has to give she can't continue to be mean to kids. then we went to speech therapy and her therapist and i had a nice talk. she said that besides oral apraxia she feels Lexi has some oral mouth weakness. so Lexi has a double whammy with that. but good new in physical therapy she peddled the bike on the carpet for the first time.

new pics




Tuesday, February 21, 2012

at a stand still

lexi turned 4 on sunday and i still cant believe she is 4. she has grown up in the last yr. last year she had a pacifier and didnt use the potty. now she is almost potty train and has been off the pacifier for over 5 or 6 months. as for the next couple weeks they are gonna be busy since it seems like lexi has at least one dr appointment a week plus she still has ot, pt, and speech once a week. i just hope this dr appointment goes ok this week and i dont get mad at the dr. shes rude and arragant and i dont take to those people to kindly. then on the 6th she meets with the sleep specialist and im hoping to get good news and find out why shes making the noises she does in her sleep. it freaks me out

Wednesday, February 15, 2012

genetic results

well we got the results from the genetesist and there is nothing genetically wrong with her. they said that anything the neurosurgeon sees is probably anatomical but not genetic. that is good and bad because now we have no answers still just more questions.

Friday, February 3, 2012

therapy and a new iep

so yesterday Lexi had pt first thing in the morning. she did wonderful and even peddled the bike around the gym 2 times with little assistance from miss Tricia. she then had speech and it went a lot better than last week. she worked very hard and didn't have any meltdowns. after speech we went to Lexi's school and she was excited to show me who her teacher was and her class room. she is doing wonderful in school progressing like she should so that's very good. she does get a little aggressive when kids get to close or they want to play with a toy she thinks she should have. as far as next year they want her to go to summer school this year so she doesn't forget what she has learned. then next school year they want her to go to the stars academy which will work on her talking a lot. she will go to that class on Mondays and Wednesdays. then on Tuesdays,Thursdays, and Fridays she will go to the reach program which she is already in. I'm excited for her to be able to go to these classes because I think in the long run it will help her out a lot. I've seen how far she has grown in the last year and I can't wait to see how much further she progresses in the next year. Her birthday is in 17 days. Its hard to believe she will be 4 where has the time gone seriously. Health wise she is doing good her blood work came back normal so no worries there. we go see  genetics the 15 and i hope we get answers but if not I'm OK with it.

Sunday, January 29, 2012

still no answers

well we went down to rileys for a mri on friday and to meet with the neurosurgeon. the neurosurgeon looked at the mri and said its one of two things. the mass could be a lipoma or a hamartoma. the lipoma is just a fatty tumor and the hamartoma is around the hypothalamus. we believe it could be the hamartoma because it would explain the seizures, the behavior problems and the developmental delays. but we wont know what it is for a while because they have to watch it to see if it grows or if she starts having gelastic seizures. they cant take it out because if they was to remove it it could cause more problems than what its causing now. so for now we are just waiting and seeing what happens. let me tell you its hard to just wait and see and not know what is going on with your child. i want answers but they cant give me any answers

Friday, January 20, 2012

back from rileys

we went to rileys today and at the endocrine dr they did blood work and said that unless anything comes up with her blood work then they will see her back in 9 months to make sure shes growing fine. the eye dr said her eyes look good but she wants to see her back in 6 weeks unless the neurosurgeon decides to remove the mass and then at that point the eye dr wants to see her back in 6 weeks after the surgery. so for now its a wait and see kind of thing like everything else. also i got the call and we have to be down at rileys next friday for a 930 check in and a 11:00 mri scan. i really hope this mri will give the dr alot of info and they will be able to tell what it is better.

Wednesday, January 18, 2012

tomorrow

tomorrow we leave for Indy. we decided to go down a day early so we can have a little fun before her appointments on Friday at Riley's. Friday she goes to Riley to meet with endocrinology and ophthalmology to check and make sure everything is OK. i'm hoping eventually the doctors will figure out why shes having chronic diarrhea. i know it cant be all that good for her to constantly having the craps. i dont think we will find out anything on friday but we will have a somewhat fun day.

Saturday, January 7, 2012

feelings

today has been a hard day for me. autism really stinks, i want lexi to be able to talk and play like all the other kids. i know god made her unique and i need to just deal with it but its hard. especially when everyone around me still says she doesnt have autism even though 2 different doctors have diagnosed her with it. i mean come on.and then the staring when we go out is bad. i just want to be like stop starring at my child she has feelings just because she cant talk and has a meltdown when she is frusterated dont mean you can sit there and stare at her. how would you like it if i starred at you. probably wouldnt like it. and then there is the potty training. i really pray she will be potty trained soon. and will start talking this year. i want so bad to make life easier for her but i cant and it sucks

Friday, January 6, 2012

sleep study complete

we did the sleep study and omg that was an experience i'll never forget. she didn't like the tube they put in her nose so she kept waking up screaming. i felt so bad and wanted to pull it off and say i'm done stop hurting my baby. but i didn't because i need to make sure she has no issues sleeping. next week is kinda a calm week with ot, and speech and maybe pt if i can reschedule it to next week instead of the 19th. shes making progress with pt but not with speech.