So today Selah did something absolutely new.... When our nurse Aaron was working with her legs, she stuck out her tongue. I know that doesn't sound like much BUT she did the same NEW type of movement repeatedly. We were all shocked. It was a specific movement that speech had wanted to see as it seems to indicate more control of the mouth. Our nurse was really excited about it.
So we will see what happens from here.....tomorrow is the half way point in her treatments....
She continues to tolerate the HBOT really good. It doesn't stress her and she is swallowing enough to clear her ears, they continue to look fine. I'm so glad she didn't have to get tubes for her ears to do this.
This afternoon I met with a community leader who had met my husband at a function. She read our story in the paper and wants to help do some fund raising for our family. I'll let you know as things are set up. It's encouraging when people want to help out.....
We still do not have an answer in regards to our nursing situation. We hope to hear something tomorrow.
Thought you'd get a kick out of what I saw when I went to the post office today....yep we live in the county...bunch of wild chickens right in town, living in the woods by the post office LOL
So my projects for this week, besides HBOT 2x a day for Selah....and regular life...is to get Steve enrolled in Driver's Ed.... And get the three little ones enrolled in school. I'd been meaning to call about that for a few days but I spend basically 4 hours a day at therapy with Selah, plus I pick up Shad in between...and everything is such a drive for us.
We have had such a FIGHT with the public school system to get Sam services from the time we moved here. Everything came with a fight and I have so many stories....CRAZY things from a home bound administrator who was a FAILED principal (her school had gotten F's for 6 years in a row and then they put her over homebound and vision services, she was a trip. .... Let's just say I was WAY TOO KIND "back in the day" Then I had a teacher who would tie a rope around Sam's waist and lead him around our yard like a dog. The teacher said it was to train Sam to hold something in his hands, like "pre cane training" Only thing is I didn't like it and I told him never to do it in public. So we are at the school for a meeting, he offers to take Sam outside and he ties balloon string around his waist and leads him around the school like an animal... did I mention this school had floor to ceiling windows???? So all the children could see my son being led around like a dog. (btw, I checked with several blind organizations and that is NOT an acceptable or even heard of method to teach visional impaired kids how to use a cane....) Yeah...I really am a better Christian than I think when I look back at the foolishness I put up with... My crapometer is out of order now...LOL I really can not believe how nice I was about it I should have called CNN!!!! Although it was not addressed as deeply as it should have been as it happened right before we left for Ukraine and the agreed on plan was that we would get a O & M (Orientation and Mobility) teacher from the local blind services, Cause you do know that guy nor his supervisor will NEVER have anything to do with any of my children. Of course by the time we got home from Ukraine, school was almost out...then we had summer and our trip to NY....then the accident..... so we will see how things go now....
Last year Sam was "withdrawn" from school just DAYS ( just FIVE days to be exact!!!! ) after the accident and the paperwork says he was being enrolled in another state.... WOW! I can assure you that on August 20, 2012 I was NOT withdrawing my child from school. At that point, we didn't even know if Selah would live .... if she did live, they had hoped to have us home to Florida within a month.... so either way we assumed we'd be home before long. We never requested for him to be withdrawn and we certainly never enrolled him nor planned on enrolling him in another state.... I believe he was "withdrawn" on purpose. We had a teacher who was nice but let's say not very motivated to work.... with Sam withdrawn, that meant when we came back we 'd have to start all over again with and IEP and getting services together. Therefore the teacher did not have to come to our house during all the time it took to reenroll him....slick huh? Let's also say that teacher also will not be working with my family again.......she missed so many "sick days" anyhow that I was going to request another teacher...
Last school year, we turned in all the girls' paperwork and Sam's also. We also scheduled the girls and had their evaluations done. With all of the hospitalizations Selah had after we had gotten her home, I could not do much more.... And of course I had NO help from the school board although they had been contacted by the Rehab hospital regarding Selah but they did nothing to help me. There is not even a record of Selah in the public school computer although they had been contacted by the rehab and things were supposed to be started.....in JAUNARY! And of course we had the girls' evaluations done .....and all three's paperwork turned in.......
Believe me I get so tired of CRAP! Over all I am not an angry person, I have lots of friends, most of my friends are old ones I've had since childhood or college.... I tend to keep people in my life. We have had some great people work with Sam over the years who are like family to us and we stay in touch even tho they've moved or we have....We have a great therapist now and nurses for Selah that we all get along..... BUT WHEN I COMES TO MY KIDS.... I get so angry when things are not done correctly and I have to deal with people who do not do their jobs..... Things like this make me mad. It seems like every time I turn around, I'm having to fight some battle to get my little ones some service or medical help they need.
I run a tight ship when it comes to them. With Sam, the things we have dealt with the most has been medical and educational. When I deal with medical stuff, I look for the BEST doctor and that is the only one who I let touch my kids. I won't put up with anything I think is unsafe or determinatal to them. With Sam, unfortunately I had years of experience having to weed out bad doctors or nurses.... From the first doctor in the NICU who refused to believe something was wrong with Sam's eyes (btw he lost his medical license to practice because of coming to work DRUNK 3 years after Sam was born....no wonder I am like I am....) I have had to go with my gut and fight for him. Then we had to fight to get Sam the services he needed...first in therapy and then in school....
Steve and Shad have always gone to private school (except for when I homeschooled them last year- and this year for Steve) So 11 years in school for Steve plus 3 years of preschool and 4 years of school for Shad....NEVER ONCE in those years have I ever had to complain or have a meeting with anyone.... Steve started in a private preschool and went through 4th grade at one school before we moved here...and Shad has been at the same school since kindergarten..... It amazes me, I have no complaints in all of those school years about a teacher or an administrator in two different private schools.... But yet with Sam's situation....it's been one big battle after another....and now adding the girls to the mix, Oh my....
I've learned a lot, and I was WAAAAAAAAAYYYYYYY too nice for too many years (although I know there are folks who would disagree with that statement LOL)
I have nothing NICE left in me for the record....really nothing nice.....
I'm tired of fighting for my kids but I won't stop. However from now on, gloves are completely off.... It's time for things to be done correctly.
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