LONG A** WEEK

AHHHHH..... Ok I just needed to get that out!

This week has bin hell and then some.... So glad its over...

Last Friday:
Rylie finished her evaluations last week. She has sensory issues that need to be addressed but they are not serious. Things should could probably out grow. Her speech is realy delayed though. She has the communication skills of an 11 month old. So almost a year behind. Think of a baby just learning to talk and understand what u are saying and thats Rylie. Its recommended that she gets two sessions of speech therapy a week. But with our insurance its just not gonna happen.
So I called ECI (early childhood Intervention), they were here today. Ill get to that in a minute.

The weekend went well. Nothing much to talk about. Some being lazy around the house on saturday and a trip to the inlaws on Sunday. My MIL gave Rylie a tweenky and poor kid didnt know what to do with it. She just held it loosely like she was scared of it and would not taste it. BJ ended up eating it instead. hehe.
Monday we spent at home just chilling and I spent alot of time in bed just laying around. The girls had started coughing during the weekend and it realy escalated on monday. Then around 2 pm I started feeling realy bad. Upset stomache, body aches, and chills. I did not move off the couch except when I had to.
Tuesday I was feeling better and had a WIC appointment that I had to go to. So even though I was week we went. I had no fever and made sure to stay away from any other kids. Rylie hit another kid for the first time. Ill admit the kid was being a brat. He had just turned two and his mom had no control over him what so ever. But I have never seen Rylie try to hit anyone other than her sister. She usualy just shy's away from them so it was pretty shocking. It was also my brothers 20th bday. Happy Bday Cody! Not that he will read this no one does but hey what the hell. Anyways, we went over and had dinner at my parents. Jojo enjoyed singing and giving him his gifts. Rylie threw a fit when they started singing and walked away from her to my brother. Not sure if she felt left out or if the singing upset her. You never know with this kid. So she kinda ran after them and threw herself on the floor and cryed. It was a super long day for everyone and I was pretty drained. Went home we all took some meds and crashed out.
Wednesday came along and I spent it in bed or on the computer. The girls were still coughing and kinda crabby but nothing too horrible. ECI called at like 3:30 as I was about to go lay down and sayed they would like to see her on Friday at 12:30. I freaked. We have bin sick all week so no house work had bin done and I had an occupational therapy meeting on Friday in Corpus at 10:30. So that only left thursday to get his house presentable. AHHHH...Lots of sleep and ready to eat foods. Early baths and bed.
Thursday dawned bright and early. I was feeling drained but I pushed thru and got the house as clean as possible by 3:30. Had to swing by my Inlaws house to pick up some fundraiser stuff for Jolie's dance class. Off to dance class we went. We were pretty early so I let the girls play on the play ground for a while. They enjoyed it. They needed the fresh air after the week we had. Parents started showing up with their kids and my heart dropped. I hadn't read the note the teacher sent home with the kids last week because Jolie went home with my mom. They were allowed to wear their costumes to dance and Jolie was the only one who didn't wear her's. I so felt like crap. I don't ever want to be the forgetful mom or the mom who's to lazy to dress their kid up. UGH! I promise not to let that happen again. And honestly she didnt even notice and she looked super cute in her dance clothes. It was parent viewing so we got to watch what they were working on. LOL. I didnt realize that my child is the class clown. Now If u ask BJ I have no sense of humor and BJ's humor is limited to nasty or mean jokes. So we have this little class clown. Completely in her own little world during dance class. She enjoys the music and some of the movement but it was so funny watching the faces she would make and do a completely different dance then the rest of them. Granted she was still coughing during the whole class (she covered her mouth for every cough yeah!) but she was still happy to be there. The teacher asked her if she wanted to dance with everyone and Jolie told her No! Im sorry I laughed. Jolie is very assertive. She will obey but it takes a little threatening or firm talk sometimes. Her teachers think she's a hoot though. I was worried maybe we should take her out because she wasnt learning as much but as I watched the other girls I know who are exactly her age. They didnt always do the dances either. Would stair at the ground or play with there feet so no biggy and she enjoys it. As long as its fun. So after showing off for the parents they got cake and juice and we went and met nana and sister out at the play ground. By then it totaly hit me and I was beyond drained. We picked up some taco bell and headed home. I was soooo dissapointed when I drove up and BJ wasnt home. He'd bin gone since 9pm the previous night and should of bin home. Well turns out he wasn't getting off till the next day. Some we eat bath and go to bed. Jolie and I were up all night coughing. Definitly not a restful night.
Friday came along. I got up at 8! Shocking I know. Got dressed cleaned the house up again and woke Rylie up. Got everything ready to go and when my mom showed up I left her in charge of getting Jolie up and dressed and they were gonna spend the day together. Me and Rylie went to OT in corpus. The therapist wants me to try some weird technique that involves rubbing a soft brush up and down Rylies skin all over her body and never breaking contact. Stay away from her face and stomache and roughly drag this soft comb thing all over her body. EVERY HOUR AND A HALF for a WEEK! Um I dont see how this is gonna help Rylie's sensory issues in any way. The therapist tryed to practice on Rylie in the office and Rylie went stiff. Started crying and kicking and just wanted left alone. She was in my lap and I felt like telling that lady to back off. I know that I can do this with out much of a fuss from Rylie because she's comfortable with me but every hour and a half besides bed time but including naps for a week. Its supposed to open her senses or something but all I can see it doing is chaffing her beautiful baby skin and havin her pissed off at me for the next week. Gonna look into online and see about it and then make my decission.I want to be open minded but it just makes me think the lady is a little wacky. We shall see.
After OT we went home. BJ got home around 10 so he had a 34 hour shift. He was tired. We all sat down and ate lunch and he went and crashed out. ECI showed up (yeah they found my house) and were here for about 2 hours. The asked alot of questions and played with Rylie for maybe 10 minutes. That was annoying! About half way thru they asked me were she went. I told them thats a typical day for me U never know where she is. She's supper quiet and stays hidden unless she needs something. Rylie does not require social interaction. She will go to events play and be happy but she's usualy alone. She does not require people to be around. So anyways, She had bin playing in Jolie's room on the floor (about as far away from ECI in my house u can get) and fell asleep on the floor. Too Cute. We finished up paper work and they determind that they can help me. That it will be OT, Speech, and some other that they didnt even tell me. Each will come every two weeks. So 6 visits a month. Now that sounds like a good amount but remember she was recommended to have 8 visits for speech therapy a month. So its only 6 visits for 3 different therapys. They can increase the therapy or decrease it depending on how she's doing (and how there schedules are) so we shall see. They are supposed to call me once they get all the paper work together and get her medical charts from her doctors office.
IDK if Im just being ungrateful (I dont wanna be) but it just didn't seem like they saw what I see and seemed to write off what I said as being 2 or lack of communication. The ECI Occupational therapist said she had some sensory issues but not many and they didnt seem serious. However she also said she didnt think she was autistic that all her characteristics of autism could relate to her sensory issues. She has quite a few autistic traits but none are serious. She's very high functioning but If all those traits be because of her sensory issues how does she not have very many sensory issues. Again UGH! So hard to understand any of it. So anyways, they are supposed to call me and its a wait and see game until then.
Her paperwork came in for her Neurology Evaluation... Its not till March! Hello March! That's five months from now. So Im gonna be the annoying lady on the phone calling all the time asking about cancalations (once I can talk again Im loosing my voice) because I dont want to wait until march to determin If she has any underlying issues like Autism or Sensory Proccessing Disorder Or Whatever! At least I finaly got an affermitive on that the Neurologist is in fact the one who will diagnose her if he see's fit. Yeah One little bit of good Information!
Tomorrow's Halloween. Have no Idea If we are doing anything. Its touch and go right now with how I have bin feeling. At the very least Ill let my mom take Jolie Trick or Treating. Rylie's still really little anyway so she's not gonna care. But Im sad cause I bought there cute costumes and wanted to enjoy this halloween. Anywho, If u actualy read this loonngg post. Bless U. I dont think I could get thru it again. HeHe! Happy Halloween everyone! Be safe enjoy the fun and I hope everyone looks cute in their costumes. Until I feel like boring yall again. Chio!

So Friday went well as far as the therapy went. Both therapist say even without completeling the evaluation that she does in fact qualify for them but they need to finish up for paperworks sake and to send to her regular doctor so we can look into diagnosing her. Right now we are looking at high functuning autism and SPD ( sensory processing disorder) but nothing has bin confirmed because I don't even know who's supposed to do the diagnosis. I thought the therapist would but nope they just evaluate and give their opinion. So who knows. I'm kinda just taking this one week at a time.

On the bad side. Found out that each therapy is gonna cost me 40 dollars each. So 80 dollars a week every week for as long as she needs therapy. I called EI today ( early intervention) and they are going to refer her to be seen but I have no idea how long that will take. They also are going to use a therapist from Robstown (ugh) because they are closest to were I live. I have no faith in robstown doctors. So yeah I'm not exactly happy about it. Also EI does all of it's appointments in ur own home. I'm not realy comfortable with strangers coming into my home. And don't understand how they will do the Therapys in my home. I guess u could but it seems like it would work much better in an office setting with everything the specialist might need available to them at all times.

I called the insurance to make sure about the copays and she said that they could do it that way or I could pay the deductable and then have the therapy covered 80 % by the insurance but Rylie still has 1000 left of her deductable. So I would have to pay all of the therapys till she reaches the thousand that would take forever. It not like I have a 1000 dollars just sitting around to spend.

I know she needs the help and I want to do everything I can to help her but I'm starting to think that she may have to wait till she is in school to get the help that she needs. We just don't have the money needed for all of the medical bills and I don't have much faith in this early intervention system. I will give everything a try and keep up with the therapy as long as we can afford it but not sure how long that is gonna be.
Keep us in ur thoughts. Thanks.

So finaly got 2 of rylies evaluations scheduled for this Friday. The speech will only take one visit to determin if she does need the therapy but the occupational will require 2 or 3 visits to determin if she does need it. So for the next couple of weeks we will be occupied Friday mornings till noon. If she does need them she will continue on Fridays until she they determin she doesn't need them anymore. The lady seemed realy nice. She has the kids call her miss Kim. Not that Rylie can say that but maybe oneday. Still not sure about the neurology the referals dept wasn't sure if the doctor put in the refer or not. So we may have to pay another visit to the doc which sucks with all the flu crap going on and a 40 dollar copayment sucks too. Anyway it makes for a slightly busy week for us. Wednesday is storytime Thursday is dance and now Friday will be therapy. Hopefully I can keep my Mondays and Tuesdays free. I actualy am starting to enjoy just chilling at home a couple days a week so hopefully we won't have to give that up. Anyway. Just a little news. Will update on how Friday goes.

I'm back! LOL. It's bin awhile. Life is crazy as usual the girls are good. They tend to drive me crazy most of the time but I love them to death so it's ok. Hehe.
We started dance class with Jolie a few weeks ago. She loves it. My only complaint is it doesn't seem to be enough for her. A 45 min class once a week is just to short. She gets excited all week waiting for it to be Thursday again. I would put her in another one but it would have to be a different company and she would be learning two different things so that would be way too confusing. Can't wait till spring when she can play kickball for the first time she's gonna luv it. She's getting so smart too but that has it's drawbacks including tons of backtalking and bossiness. Love the kid like crazy but hate arguing

ing with a 3 yr old.

As for little miss Rylie there realy isn't much a change. She has gotton better around people but is even more quiet than usual. She finaly learned to say mama. Yeah!!!! That brings her total word count to 4 which is not altogether great for a 22 month old. She finaly had her hearing screaning. She passed but the hearing specialist was worried about why we didn't think she was hearing. After he asked me some questions and evaluated her he decided that she needed some further evaluation to rule out somethings. Including a sensory disorder and even possibly autism. So I am waiting on a call back for her appointment times for speach therapy, occupational therapy, and pediatric neurology. Some super scary words. My hope is that she is just a little slow

Don't know what the he'll happened there but gonna continue. My hope is that she is just a little slow developmentaly and that she will catch up. But alot of the things the doc said and that I have researched have maybe alot of since in regards to Rylies behavior. It's hard and scary and I have alot of people thinking I'm retarded for getting her tested but I see it this way. She's around 6 months behind developmentaly if I continue to pretend that she isn't how far behind will she be when she's 3 or 4. I just want to rule out anything major and find ways to help her catch up to other kids her age.

Well that's what's up with the girls. Me I'm doing good trying to learn to deal better with stress. Gonna start manging my time better and start dieting and working out again. Those are my plans anyway but my ass tends to procrastinate until I forget what it was I wanted to do in the first place. Hehe. BJ is good too working hard and providing for his family. I know he gets stressed sometimes and I try to treat hiM extra nice and do little things for him when I can. I'm glad that I can stay home with my kids but I wish I could help relieve some of the financle stress off his shoulders. I know it's gotta be hard but we all manage to do our part. And all together our little family tends to run pretty smoothly. Well gonna go to bed. Those are the crazy stressful thoughts going thru my head.