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

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

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

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.

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.

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.

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.

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.

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

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.

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.

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

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.

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

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.

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

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

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.

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.