Lost my mojo.....

can I have yours? Scrappin mojo that is! I have so many freakin' cute things here to use but just cant come up with anything! It happen's wayyyy to often around here. Makes me crazy. Im guessing that if I had someone to scrap with that would help lol! OH yeah and someone actually willing to watch him for me~MEN!!

Anyone wanna come over I have pepsi and peanut m&ms lol!

Dr's,Dentists and other stuff!

This was a busy week for us Owen had CP Clinic on Weds. we have increased the risperdal to hopefully help him sleep. I dont know how that will work really, I asked about other meds to help with biting but none were offered~I feel like we have slipped thru the cracks as far as Owen goes. I know the drs cant know everything but I wish they were more helpful. We did get good news as far as a gait trainer, Dr. K said that the school needs to work with him a couple wks and see how he does,write a recommendation and then we can start pursuing one! WOOHOO thats such great news!

Thursday all three kids had to go to the dentist,they dont have cavities thank goodness! Owen have calculus on his teeth from being gtube fed which has helped prevent cavities,he has however been grinding his teeth so much that they are wearing down. If we notice that his teeth are giving him pain (not sure how we will tell because he cant tell us) we will have to go to the hospital so he can be sedated and have them worked on. SO far tho I think he is ok.

Ethan gave me quite a scare yesterday I admit I panicked and took him to the E.R. I felt kind of silly but with Owen's heart problems etc I thought it was best he be seen. He came home frome school and wasnt acting right,said that his chest hurt then his arm hurt and finally his tummy hurt....so off to the ER we went I had Alex stay with Owen until my sister could come and help with Owen he is difficult sometimes (who knew? lol) anyway they did xray and thankfully he was just full of stool I know I know silly but all sorts of scenarios were going thru my mind and none good I might add! He was back to his normal self last night.

I called and ordered O's monthly supplies from Apria and was told that his insurance would pay for formula....WOW I had no clue that will surely help alot. Rainbows' is a birth to three program here in Wichita that Owen used to attend until August of this yr (he had to switch to a new school) ANYWAY we still have case management thru them and evidently every yr the case mgrs submit families to receive Christmas gifts etc....WELL S called me yesterday and told me we got approved!!!! Im not sure what all they do exactly but wow I was soooo excited to find that out. Evidently all the families she submitted got picked what a nice surprise!

I got a phone call the other day from a lady from the angel tree, it is a prison ministry thing anyway they are going to be getting something for Alex for Christmas this yr, evidently her bio father asked again this yr. to get her something from him....he asked last yr and they forgot about her.

OHHH yes for those interested I found shoes for Owie! I went back to payless and found some hiking boots that done come off with the braces! One last thing, pls check out my friend Norma's blog she also has a special needs son!

Best,
Kirsten

Another post

I do wish I could wrap my mind around all the things I want to say instead of making a whole bunch of posts during the day....well such as life I guess! I am having a heck of a time finding Owen shoes to fit with DAFO'S I think I am going to have to break down and go to stride rite, I have bought numerous pairs brands the last couple months and just cant get any that stay on. So saturday I think I will pile everyone into the van and head out east. We go to the CP clinic next wk not looking forward to that, for some reason they always have us come at 8 then spend the next 4 hrs there and dont get to see all the drs. I am going to ask if we can get a script for some sort of stander as we have nothing but the wheelchair which is great dont get me wrong, but other than that we really dont have anything for him to get around in I dont know how Dr. K will feel about the stander but he sure does great at school with it! For someone nonverbal he sure has alot of kids that like him in school. Its really sweet. There is one little guy who is in Owen's class and rides his bus but he is a cutie pie, he waves at me everyday and gave me a kiss at the halloween party I told his mom he could come over anytime :-)).

Well, I guess that IS indeed it for the night
Best,
Kirsten

Big football game

There is a big game friday and alex was asked to work the concession stands during 3rd quarter I think she is excited she has never done that before and this is an opportunity for her to sort of know what its like to have a job, lord knows she is trying to find one not many places hire 15 yr olds. I am SOOO proud of her she has been doing poorly in school for the last couple yrs due to her depression etc but WOW she got her report card and has a 3.14 gpa 1st semester in HS GOOO GOOO GIRLY! I told you you could get back to doing well trust me!

My Ethan boy is he getting sooo big!

Poem I love

A meeting was held, quite far from earth"It's time again for another birth"Said the Angels to the Lord above,"This special child will need much love"Her progress may seem very slow,Accomplishments she may not showAnd she'll require extra careFrom all the folks she meets down there.She may not run or laugh or playHer thoughts may seem quite far awayIn many ways she won't adapt,And she'll be known as handicapped.So let's be careful where she's sentWe want her life to be contentPlease, Lord, find the right parents whoWill do this special job for You.They will not realize right awayThe leading role they're asked to playBut with this child sent from aboveComes stronger faith and richer love.And soon they'll know the privilege givenIn caring for this gift from Heaven.Their precious charge, so meek and mildIs heaven's very special child
.Copyright © 1981 by Edna MassimillaPublished in The Optimist - newsletter for PROUDParents Regional Outreach for Understanding Down's Inc.

I found this sometime ago that I used on a scrapbook page for Owie, I still read it often and it says so much of how I feel. Enjoy!

UGh forgot :-))

I forgot to add that all my links are at the bottom of my page under rockin sites! There are some great places on the web to check out, one is about the syndrome that Owen has. All the sites I want to spread the word about tfl!

Check out these sites

My friend from my dolly group has an AWESOME website up and running, check it out! Also a family on my preemies group is trying to come up with the rest of the money to adopt a sweet lil guy so if ya have time check that out too! I will be adding more things as time allows so check back!

Forgive my complaining

I guess you have to get it out sometimes and today must be my day for that! I am sooo frustrated with doctors, I guess just the whole damn medical system,maybe I just expect to much from doctors I know they cant know everything but I want ANSWERS I WANT SOMEONE TO HELP US it is VERY stressful when Owen bites himself and we cant get him to stop. Thanks to all the helpful drs therapists etc that say ohh just tell him to stop! Well DUH like I haven't already thought of that? Ya that does a load of friggin good lemme tell ya! I cant get the drs to fill out papers he needs for school and for that matter even call me back. I am about at my breaking point with all of this going on I just want to scream sometimes but what good does that do? Sooo just have to keep on keeping on, what else is there to do?

There are so many times I just feel so alone not sorry for myself because I am blessed to have all of my children and everything that comes with it even the not so fun stuff....I want someone to understand and while I know people who arent going thru the same things cant really comprehend what it's like it would be nice to have some support now and again. This is very lonely and I dont want to burden anyone with my problems there is many worse things going on in the world. There are many day when I feel like I am going to lose my mind I just cant make Owen happy and it seriously just kills me inside.

Where did I go wrong? How could I have done this to him? I love him the way he is but I feel so responsible for everything he is going thru WHY DID MY BODY HAVE TO SCREW HIM OUT OF BEING A NORMAL KID? I DID THIS TO HIM and will probably never forgive myself I just hope he does.

I was hoping to take O to Oklahoma City to a geneticist and some other drs there but dont have names of anyone that are familiar with CFC Syndrome I have to do more searching and hope to find someone that could possibly do a complets work up on him any and all prayers would be appreciated.
Anyway I guess that is it for now.
Best,
Kirsten

more pictures to add

so they arent great ones I should probably read my intruction book my camera came with.....when I got it..........6 months AGO lol! anyway will post those in a bit.

The boys had conferences this wk and did pretty good, Ethan needs work on some letters and sounds, not surprising because neither of us had really worked with him prior to kdg but he is doing great! He is a smart kid.

What can I say about lil Owie? He has made some great strides since starting in his new school as well, he will sit up unassisted for long periods of time, we have to sit him up but he stays WOOHOO! He has also really done well as far as eating, he takes the plate and licks the food off what an accomplishment! I know alot of people dont understand (inlaws and my own father) and think I should just be able to make him eat ummm doesnt work that way he has oral aversion people ya cant shove food in their mouths and expect them to eat grrr! Anyway he is doing some wonderful things he says mama,dada,ga I think thats for go because he leads me to where I hang my keys and lifts my hand lol what a guy! He says baba but Im not sure what he means by that one and last night Rich said Owen was working hard to make a word then clapped his hands and said "ap" now that is a major deal in our house!
Oh alex got her grade card and I am happy to say she is actually working hard yipppeee! she got one d- but the rest a's and b's for a GPA of 3.14! GO GIRL

I am down to one doggie now, The Great Oscar is all I have left, Rich had me find homes for my doxie's I have had them since they were 8 wks old and I am sad but I guess it's best as I didnt have alot of extra time to spend with them at least Im telling myself its best.

My SIL'S friend has a girl who is in a wheelchair, she just got a new one since she is growing (GOOO S!) Anyway, her mom is going to give us her old motorized chair its pink I hope Owen doesnt mind lol anyway we are going to just use it around here to see if Owen can manuver it. How fun that will be! I was told basically to forget the idea that Dr. K (from the cp clinic) will approve a gait trainer for Owen sooo I think we will try and see if we can get him a Dynamic Stander instead....Im not giving up totally but Im not sure anymore if now is the right time for that. I just want him to walk sooo bad! I think he will take a few steps at some point,for now tho I will be happy with the things he is doing!

I think that is enough for now although I think I forgot something lol!
Best,
Kirsten

OOPS FORGOT

If you feel compelled to do so would you kindly go here:http://www.robinhoodfund.com/cast-your-votes/wish/id/14320 and vote for me? Doesnt cost anything I am just trying to win so I can try and get a pediatric gait trainer thanks!

Dang!!

I finally remembered my log in info yay me haha! ANYWAY wow it has been a loooong time. So much is going on i dont know where to begin. We got Oscar in August he is doing very well. Im so glad we were able to get him for Owen he has since started to be willing to touch Oscar! That is such a HUGE step!
The kids are all doing well despite one wheelchair mishap with Owen at school, he wasnt belted in and unfortunately fell out of the damn chair I wasnt a happy mama!
All the kids are doing very well in school Owen is trying foods yippee! maybe one day we will get rid of the Gtube some day. He is super funny, at school they put him in the stander and the little turdy birdy runs over the other kids~great my kid is the class bully! Although the teachers say that the other kids think its great so hopefully he will still have friends at the end of the yr lol!
Ethan is doing great at kdg he is finally starting to get used to it and has tons of friends, although I knew he would he is a sweetie! Alex is doing great in her 1st yr of high school she has friends that are upper classmen and has been invited to numerous parties who'da thunk it? hehe. I just got the progess report and she has a 3.14 grade pt average not too bad I dont think. After LAST yr and not turning in her work dang kid lol. SHe is trying to find a job and has applied several places they haven't called her back yet but hey she is still only 15 maybe this summer. I told her tho that if she gets a job she will have to give me 10.00 a wk for gas and save half of every check she agreed and that will give her money to do things. Maybe she can save up to take driver's ed and that way I wont have to cart her everywhere lol! Oh and there is another boy she likes a senior they hang out before school LORD Im scared lol!
Best,
Kirsten

TGIF

YIPPE finally friday lol! I guess with all the appts we had this wk it seemed like a longer than usual wk! I do have alot more coming next wk, dr for me, Owen has to go to the CP Clinic and hopefully he will be able to see the Neuro and Im sure they will tell me again that he has seizures the lovely and I use that term loosely dh will finally believe me I hate that he thinks Im making up stuff but he needs to friggin learn to listen. There have been times I just want to take the kids and find my own place but even tho he isnt very much help I dont know if I could do it alone. I like the times when I sneak into the bathroom to read lol. I think with all the stress of a teenager, 5 yr old and a special needs child we just dont have enough time for each other. I feel like I have 4 kids instead of three lol!

Best, Kirsten