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


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