What Would U Like 2 C?

After being on the net for a year, I’m ready for some input.  So let it all hang out.  Well, in a nice way.  Don’t be all mean and stuff.  Keep it constructive cuz I’m fragile. 

What did you like?

What did you hate?

What do you want to see more of?

Any questions ya wanna ask that I can answer on the blog?

I wanna write what you want to read so any ideas are welcome :)  And of course, I’ll still tell you about all of the daily stuff going on around in my land.  I love going and remembering what had happened in our world.

It’s My Blogoversary!!

It is my 1 year blogoversary.  I can’t believe I have been doing this for a whole year.  I have had so much fun.  I love going back over my blog posts and remembering some of the stuff that has happened.  It is great to see the support that I have received from total strangers.  And it is neat to see how many people know a little bit more about fragile x syndrome because of the stories about my family.

Statistics

• Blog Posts: 495
• Blog Comments: 4,215
• Spam Comments: 11,286
• Total Views:  27,014
• Best Day Ever: Monday, December 10, 2007 with 262 hits
• Top 3 Posts:
  • 10 fx things
  • r story
  • fx summary
• Top 3 Searches
  • Jim Cantore divorce
  • love is comics
  • doris buffett address
• Top 3 Referrers
  • The Other Lion
  • Blogger Profile
  • AutismVox post on Chris Benoit
• Top 3 Clicks
  • conquerfragilex.org
  • http://beautifulblonde.wordpress.com/
  • http://www.fraxa.org/pdf/News03v2.pdf

1 year in Blog Posts

A lot has happened in the past 12 months.  Here is a rundown of some of the highlights of our crazy and wild life.

• Matty’s potty issues flare up (also first post)
• We had an insane car accident on the weekend I was celebrating my 30th birthday
• School ended and Matty’s wasn’t having it - he wound up spraining my thumb!!  Transitions are never easy
• We won our emergency custody suit for Lauren and Austin
• We were told that Austin had atrophic gastritis (later we would find out it was stress)
• I had an HIV scare
• Rachel faced bias in soccer that set off a months long problem solving conversation with the league
• Kevin left his job … it was not a healthy place to be (he is back at a job he used to love!)
•  I had a partial hysterectomy
• The school thought Austin was having seizures (now they want to test for ADHD)
  and…
• Rachel probably suffers from depression which is common in FXS girls (counseling to begin May 5)

Of course, my life wasn’t only these dramas.  We have had lots of joys.  There have been quite a few uplifting stories in the fragile x and autism realm.  I have shared some pretty funny stories from my children.  We’ve played a couple of games.  I also started rehashing my memories.  It’s been so fun!!

Here is to another, hopefully calmer and less eventful, year!

13-yr old for rent…

I’m going to strangle my 13 year old.  You have noooo idea how angry I am at him right now.  He is such a bright boy but he is majorly slacking off at school.  He is in danger of failing some 7th grade courses and being held back.  It is possible that he can utilize summer school to continue to 8th grade but I’d like to prevent that.  Our summer school is full of gang bangers and druggies.  Austin is to impressionable to be around those kinds of kids.

Kevin emailed his teachers last night asking about his grades and what we can do to avoid summer school.  (Sigh) We found out they were issued report cards last Thursday.  Have we seen it??  That’s right, NOPE!!  Everyday I ask the 3 kids in regular ed if they have homework, anything for me to sign or anything I need to see.  He has never once said anything to me.  Because of him being lackadaisical I now get to be the bad guy.  When it comes to the kids I’m a bit meaner than Kevin.  Well, I guess it depends on what it is but 8 times out of 10 I’m crueler. 

So I have to lay down the law tonight.  There will be no more video games or tv after school until the end of the school year.  If we are watching something as a family then that is fine but otherwise…nothing!  I will be checking his planner every single day and initialing it like I have to do with Rachel. 

I pray like hell I can keep him going to the end of the school year.  It’s only one more month.  Five weeks!  He has got to do it.  He has to.

And just to irk me a bit more….his biological mother predicted this would happen in court.  Grrrr!!!

Trying to Find a Diagnosis

For my past FX Memories please click this sentence.

Shortly after Matthew starting early intervention we saw his new pediatrician.  I liked this man immediately and I’ve never been a fan of male doctors.  Don’t ask me why…just a weird “Beth” thing.  Dr. H listened to everything I had to say about Matt’s delays.  He told me, with a sincerity and honesty that I’ve never seen a doctor have before, that he didn’t know what was wrong with my baby but he wouldn’t quit until he found me an answer.  I cried. 

After I left his office he spent his entire lunch hour conferring with doctors in the big city about Matt’s symptoms.  He came up with a game plan.  He called me at home that same afternoon and told me that we would start out with 4 tests: hearing test, vision exam, an MRI, and a chromosome test.  He even had me appointments for all 4 of the tests.  This man was amazing!!!

The first test we did was the hearing test.  We did the kind where he had electrodes attached to his head.  We had to put him to sleep first because he would have ripped them off in a heartbeat.  I had to keep him up all night the night before.  His father stayed over.  I should have known he was already gone.  I tried countless times to get him to help finish our wedding plans but he kept changing the subject.  I was such a naive young woman…but aren’t we all.

I was a little protective of my little man and didn’t like the idea of him being in the hearing testing room alone for hours.  The technician noticed that I was nervous about it and let me sit in the chair and hold him during the exam.  I remember leaving there with a very numb arm :lol:  .

This test would be the only normal exam he would have.

In order to not have to put Matt under more than once in a short period of time we left the hearing exam and went straight down the hall to get an MRI.  This test was a piece of cake since he was out like a light. 

Next up was the chromosome test.  We did that about a week after the hearing and MRI.  I wish he could have been put to sleep for this exam.  It was a nightmare drawing blood from him.  It took 4 of us to hold down this little 8 1/2 month old baby to draw blood from his tiny veins.  It took us a good hour.  I still have nightmares about that day. 

Finally, was the vision exam.  This was another one that was traumatic.  It was so traumatic that I have never had him see an eye doctor since.  The eye doc put Matty’s head in my lap.  Then he wrapped Matt’s legs around his waist.  Then he shone a light in his eyes and poked and prodded and put eye drops in.  Matt cried and screamed and puked.  I cried and wanted to scream and puke.  I can still feel his anguish and it was 11 years ago. 

I was so happy to be done with the tests that I didn’t care about the results at this point.  I didn’t expect the doctor to find anything.  I hoped that they would find something that could be fixed or would go away.  But I had this feeling that after a ton of tests they would never know what was wrong with him.  People would think I was making a big deal out of nothing since the doctors couldn’t find anything.  Or he would be this anomaly that no one could figure out what was wrong with him but it would be obvious he had a serious defect.  

I was also scared that it was all my fault.  I was 19 with no real good examples of parents.  I was completely winging it.  My advice came from books and magazines.  What if I did hold him too much?  Was there some magical thing that I wasn’t doing that I should have known to do?  Maybe I shouldn’t have tried to raise him on my own as a teen mom.  But I would look at him and know that I was a good mom or he wouldn’t be as happy and health as he was.  And I would look into his eyes and I could see that something wasn’t connecting properly.

Rachel’s Appointment

Rachel’s appointment went pretty good.  Dr. H and I discussed her depression.  I love that he doesn’t want to instantly medicate my kids.  We decided to start out with counseling.  If that doesn’t cut it then we can go to a children’s psychiatrist who gives out medication.  I think counseling may be what she needs though.  I’m going to see if I can get her in with the same counselor that Lauren and Austin see.

For her fever and abdominal pain he ordered a strep test and a urine sample.  He didn’t the strep test since her throat seemed a little red.  The strep test came out negative.  Phew! 

Getting the urine sample was interesting.  She had never had to pee in a cup before.  So I got her the little wipes to clean herself with.  I learned that my daughter has ignored my advice to wipe from front to back.  Heathen!  I warned her that if she already had to pee that the wipe would make it 10x’s worse.  I don’t think she believed me until it happened.  She couldn’t coordinate herself to pee in the cup so I wound up holding it for her.  She kept promising that she wouldn’t pee on me.  Then she asked me if she wasn’t hitting the cup.  I was looking away trying to give her what privacy I could.  I had no idea!!  We were laughing so hard at how awkward it all was. 

The doctor came in and told us that the urine sample came back positive for something.  BUT…for some reason his test strips sometimes do that and then when they ship it to the hospital it comes back negative.  So he was going to send it to the hospital lab tonight.  Then tomorrow we should get the results.  He didn’t tell me exactly it was positive for.  I think after 11 years he knows I fret about stuff.  It sounded like maybe some type of infection.  We shall see.

If she is still running a fever on Friday then he wants her to come back in on Saturday.  I hope not.  She has had one for 3 days now!

Another One Bites the Dust

Rachel woke up with a fever again this morning.  This is now Day 3.  We have an appointment for her this evening.

About an hour ago I got a call from the nurses office at the middle school.  Austin puked on the grass.  Nice!  So he is home now.  He seems to have a little fever too.

It looks like the stomach flu is dropping my kids like flies!!

Wordless Wednesday

April Showers….

Bring May Flowers