Thursday, May 24, 2012

A bunch of stuff...

So it's been a while.  Life hits you upside the head sometimes and things like this (my journal) take a backseat.  Let me catch up on some of the things that have been happening.


N turned 1!!  You can't tell by this picture, but we had fun, fun, fun! ( Nobody wanted their picture taken.)  She has sure made advancements since having her heart surgery.  She rolls all over the place and is getting much stronger.  She's even eating from a spoon - what she doesn't spit out with 'raspberries'.  She is highly adored here by all!  And though I can't say she's spoiled, she is certainly loved to the max!

My dad's side of the family has been cleaning out the home my uncle lives in.  My grandma died 20 some-odd years ago and my uncle has lived in her house, with another family member acting as care taker.  He is a few years older than my dad - 65ish? - and has very mild Cerebral Palsy.  If he were born today, or even 20 years ago, he would have no handicap at all, but since he was born at a time when almost all children with disabilities were put in care centers, he is lucky to have the abilities that he does.  He lived with grandma until she died, and she gave him every chance she could to learn and grow.  He wasn't able to finish school since they didn't have any placement for him at the time, so he is on about a 10 year old level in many respects.  Well, you don't let a 10 year old live by himself!  The family member who was taking care of him was having a hard time with his stubbornness, as well as she divorced her husband so SHE moved out and husband (who is only related by marriage) stayed.  Weird, huh?  Well, to say the least, the house was a dump!  I have pictures, but they don't do it justice unless you can add smell to the pics.  Yeah.  That bad.  We all wore masks and gloves and basically threw away, well, almost everything.  My uncle had his say in what he wanted to keep, but even some of those things I'm pretty sure got thrown away when he wasn't looking because they have no value, sentimental or otherwise.  It was the' joke' as we were going through things as to who would find a dead cat (in reference to the TV show Hoarders) and I was the winner!!  We aren't sure if it was a small cat or a big rat, but either way it was an animal and it was quite large!  I found it in the storage room area underneath a 2 inch deep pile of cat poop.  And that was just one part of the storage room.  My uncle had no pipes under the sink in his bathroom, so he put a bucket under the sink and then used that water to flush the toilet, since that didn't work, either.  The family living with him had way too many animals, and they let them run the house.  As we took up the carpet we found beautiful, old wood flooring ruined by piles of poop.  And there were a lot of antique furniture that were just destroyed because they weren't taken care of at all!  It was sad some of the things we HAD to throw away.    BUT... we worked as a family for 2 weeks, we are having it professionally cleaned and having some contractors come in and fix things up so my uncle can move back in.  This time with a cousin who will be able to help him more and will take much better care of him and the house.

Lou is pregnant!  Right now she is 18 weeks along, but at 15 weeks she started bleeding quite heavily.  After a very tense week, they found the source, but not the reason for the bleeding.  She had a pool of blood in her uterus but not in the amniotic sac.  They took her off the blood thinners (for her blood clots) and told her to keep moving in hopes she wouldn't develop a clot, and that she had a 60% chance of losing the baby.  Obviously that was a stressful time, mostly for her but all of us sure felt the scare!!  But like I said, she is now 18 weeks and has stopped bleeding and even started her shots again with no more bleeding.  Friday she goes to a specialist that will do a 'full anatomy ultrasound', whatever that is!  She has a great OB/GYN (let's hear it for Ryan Ollerton!!)  and a fantastic blood specialist who keep in constant contact with each other.  She meets with both of them so I'm sure she will get a lot of information.  When they found the blood pool, they also discovered the sex of the baby, but she hasn't posted that on her blog yet, so I guess I have to keep it a secret, too.  But you can always check here on their blog to find out more.

And Alex.... well, he's being Alex.  When we went to the endocrinologist (diabetes doc) last time, he said that Al's thyroid numbers were weird; one was high the other was low.  I guess usually if one is high they both are or if one is low they both are.  So the doctor wanted me to make sure he was taking his meds (I knew he was, but whatever) and then have the blood taken again 2 weeks from then.  Well, I took him in and it took the nurse 20 minutes to find a vein then she botched the one arm so had to do the other arm, all in a kid that gets super anxious about blood draws until the needle is in, so the poor guy had high anxiety with no 'phew' for too long.  Then the nurse called me a week later and she had mislabeled his sample, so they needed to do it again.  Ahhhh!  I made Mike take him this time; not because I couldn't handle it, I just had too many kids around the house to take with me and Mike had some time.  I didn't warn Mike, though about the anxiety, so Mike came home a nervous wreck :-)    When we got the results the nurse said, "Man, your child is messed up!"  The numbers were still weird, meaning one was high and the other was low, and the high number was so high she had never seen one that high.  When I asked her how rare that was she said she had never seen a double digit number before;  the number is supposed to be 3.  Alex's was 65!   And the other number that was low was supposed to be .9 and Alex's was .06.  Yeah.  He's messed up.  He was already on an adult dose of meds, but they upped it anyway.  So now we wait another few weeks and get tested again!

And last but not least, I got in a fight with the school district.  Yes.  Yes, I did.  It's another long story, and I wouldn't go into details, but maybe someday my great-great-great-grandchildren will need to know how tough I am, so here it goes.  It started with a story on KSL about the school district's superintendent (Dr. Doty) and how he was using intimidation with the employees of the district.  I have friends who have been on the receiving end of this intimidation and so I wanted to get people to go to the board meeting and sign a petition asking for an investigation.  In order to get the word out about the meeting I asked Alex's teacher to send a letter I had written out to the other parents in the class, .  She didn't feel comfortable with that, but sent it to the district's special ed director.  The special ed director (Robin) called me and we set up a time to meet.  In the meantime I wrote to all the special educators in the district asking for anything they wanted me to bring up with her while I was there.  I got 9 pages of concerns and everyone of them came with a plea to keep their identity a secret!  That's how scared these people are.  I presented these concerns when I met with Robin and we had a nice chat.  It lasted an hour and she basically told me she can't do anything about the concerns unless she knows who / where the concerns lie.  I agreed and went home and wrote to all those concerned that Robin wanted us to give her a chance, and that if we stuck together things would get better.  Two days later I get phone calls and emails saying, "HA!  I told you so!" from teachers because Robin wrote to everyone and told them "not to send a parent with an obvious agenda against Dr. Doty" to speak for them and that I "had no official status."  Oooooo.  That hurt!  Who does she think she is and does she not know that parents in the special ed system ARE the official status?  Then the next day I got a letter in the mail from Robin, I guess because that's more intimidating, saying that I had lied and she would no longer speak to me about anything unless it concerned my son directly.  She's a tough one, but she doesn't know who she's dealing with;  which is another part of the story.  Her secretary is a good friend of mine and when she asked her secretary to find my phone number so we could meet, my friend said, "I have it on my cell phone."  So my friend told them that I was "a very nice person but I would fight any fight I had to for my son."  So they were fair warned!!!

So, I am in touch with someone at The Disability Law Center and IF they are doing anything illegal or unethical, I WILL fight the fight.  If they are just being petty and immature, I will let them be and just make sure Alex gets what he needs.  I don't need middle-school-drama in my life! 

Those are the high (low?) lights of the past few months.  Nothing special, but keeping me busy.  Oh, and Kierra went back to work so I get their 2 girls again, now too.  Love it!!!  My 3 granddaughters chillin' with Nanny!!  Throw in a B and an N and soon with school out we will have Al and you better watch out because we are trouble!!

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