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?