Breathe...just breathe

I can't believe how busy things have been this last month.  I wish I could press the "pause" button on life and just have a few minutes to make time stand still.  My life is not as bad as others.  I have a very good life and I am very grateful for the blessings I have.

Carly

The second day of school (August 26), Carly started texting me saying she had the worst stomach ache and she wanted to come home.  I was at work and I told her that she had to tough it out.  She begged and pleaded with me, telling me that something was terribly wrong and she really needed to come home.  I refused to leave work and made her stay.  Chad was unable to pick her up, and with our move to Houston, we have no family that can step in when we have an emergency.

The next day, she still had not improved so I took her to the ER.  She had abdominal pain and nausea/diarrhea.  I was concerned that it was her appendix.  The ER on staff was great.  They took blood and urine samples.  Right away from her urine sample they could tell that she was dehydrated and they put her on an IV.  Her blood work ruled out all of the "bad" stuff - she didn't have elevated cbc, her glucose was great, she didn't have any signs of infection, she didn't have any signs of appendicitis. Although they could not tell me what exactly the issue was, they ruled out many things that it wasn't.  We went home thinking it was probably viral and with her being hydrated again, she would be feeling better.  They asked us who her primary care physician (PCP) was.  I told them that we didn't have one as we moved to Houston six months ago.  The ER gave us two business cards of two doctors in the area that were taking new patients.

She had a rough weekend and still did not get better.  In some sense, she was getting worse.  I called one of the doctors on the card, and they were not able to get her in for a same-day appointment.  The other one was able to get her in that day.  Call it fate, but we absolutely loved that doctor.

I am uncertain what nationality her doctor is, but I suspect he is Nigerian as his accent was thick and hard to understand sometimes.  He took time with Carly, examined her thoroughly and seemed to genuinely care about finding out what was causing her pain.  He ordered a whole slew of tests to be done.  He ordered an ultrasound to look at her internal organs.  He ordered another set of bloodwork, to compare it with the ER to see if anything had changed.  He ordered more urine work.  He ordered a Celiac panel.  He ordered an H pylori test.

Two days after her doctor appointment, she went and had the ultrasound done (Thursday). More waiting.  We had to wait for the radiologist to read the ultrasound results and then send the results to the doctor.  The following Tuesday, she had a follow-up with her doctor to get the test results.  The results showed that her gallbladder is not functioning properly. It is full of sludge.  This is what was causing her abdominal pain and nausea/vomiting.

In the meantime, the poor child has been unable to sleep, unable to eat.  She is losing weight, she is pale as a ghost, and I just want to FIX HER!  Her PCP referred her to a general surgeon to discuss her "gallbladder disease".  This does not mean cancer or anything scary.  It just means that her gallbladder is not functioning properly anymore.  Sometimes it happens and doctors are unable to explain why.  She is a healthy, active 16 year old cheerleader who gets tons of exercise - drinks nothing but water and fruit juices (no sodas).  

The general surgeon did not want to jump to surgery right away.  He wanted to be 100 percent positive that it was the gallbladder causing her symptoms and not something else.  (More waiting.)  So, he sent her in for a "HIDA scan with ejection fraction".  This whole process was about three hours total, after insurance, checking, prep, etc.  They injected her with a radiopharmaceutical, which then traveled through her blood stream to her liver and gallbladder.  She had to lay still under a scanner for an hour.  Then, instead of injecting her with another chemical to make her gallblader contract, it was explained that the company that makes that chemical has stopped making it.  So, to substitute, they made her eat fatty food.  They made her eat a cup of vanilla icecream and gulp down a protien shake that had a high fat/caloric content.  Then, she had to lie back under the scanner and be still for another 1/2 hour scan.  The scanner was supposed to be recording how her gallbladder was reacting to the food.

This evening we got the results back and the surgeon confirmed that her gallbladder is dysfunctional and he recommended surgery to remove it.  His secretary casually asked me when we wanted to have surgery performed.  We are going on 4 weeks of pain and misery for this child!!!  I told her ASAP, and the soonest that can get her in is next Thursday, the 25th.  I am so frustrated!!!

In the meantime, between the second day of school and now, we have had two ER visits, two doctor visits, one radiology/ultrasound visit, and one Nuclear medicine visit.  She has missed 13 days of school and we were informed today that she does not get any credit for the semester after 10 absences.  I am working on getting that rectified.  After this, I am emailing the teachers and the principal to get this resolved.

Chad

Chad celebrated 19 years at Det-tronics today.  He's been working hard and I am proud of how far he has come and the man he is today.  He is still playing hockey on the weekends.  

Courtney

Courtney is adjusting very well to college life.  She has made several new friends and has already had a few sleepovers with her new friends at her college apartment.  She took her first college test today and got 100% (government).  I still get to see her on the weekends (I have become a laundromat and an ATM for her).  I also get to see her when she picks up Carly for cheer.

Corbin

Corbin is basically repeating last year with his struggles with having no friends due to his autism.  One thing he has going for him this year is that I am asking the state to formally evaluate him so he can qualify for special ed services.  Academically he doesn't need any help, but he needs speech and social therapy.  The ball is officially rolling on his testing.  It's a long process and I don't expect anything to happen anytime soon.  Hopefully by Thanksgiving or Christmas we might hear back.  In the meantime, he has what basically amounts to "shop" class and it is all he can talk about these days.  He absolutely LOVES it.  He made a glass mug and sandblasted a pattern into it.  He is very proud of his creations and he really enjoys this class.  It is one of the only things that keeps him going is shop class.

He also transferred from a twin bed to a double bed.  He has been complaining for a while now that his twin bed is uncomfortable and that his back hurts.  We bit the bullet and went back to IKEA (which I said I would never do) and bought him a new bedframe and mattress.  He is in heaven with his new bed.  He sleeps better and has more room.  He's about 5'7 right now (same height as the girls) and he is growing still.

We got a new refrigerator.  You would think that is a strange thing to be excited about, but we have always had crappy, hand-me-down refrigerators that never worked.  We have been married for 19 years and have never had a refrigerator that dispenses water or ice.  We were finally able to purchase ourselves a new one and it is awesome.  Again, I know it is strange to be excited over a refrigerator, but it is a byproduct of our hard work finally paying off.  :)

Signing off for now...

Follow-up to Social Media Rant

I am so grateful for the private messages I received.  I received support from friends in the most unexpected places.  I want to share a message I received from a friend from high school.  She and I got into a fair share of trouble together, and due to circumstances and miles, I haven't seen her for 25 years.  Her message to me really hit me in a time of need, and it was all thanks to social media.  So, there are positive things that happen via social media, and I was grateful for that lesson.

My friend writes:

Christy I didn't post a comment because you asked us not to in regards to your blog about Corbin. BUT as a mother and someone who loves you I felt absolutely compelled to send you a personal message and speak the words that so many of us mothers are probably screaming inside after reading that... When our children are hurt, sad, confused, upset... Or quite frankly, ANYTHING BUT GLEEFULLY HAPPY, we want to reach out to our friends, families, other mothers, and complete strangers to know that we are not the only ones, to hear our children are not alone, to know we have support and to know in this horribly critical and sometimes unloving world that at the end of the day we still have people who care about what happens in the lives of our children!!!

Christy.. I support you, I love you and know this.. you share the same battles, heartbreaks and heartaches as all us other mothers do and when no matter what the mood.. Happy, sad, heartbroken or gleefully happy.. Please continue to share your triumphs and battles!! Because us other attention seeking mongers need to know we're not alone out here!!!!

I've worked very hard at keeping identities anonymous for this situation, because it is not my intent to call people out, but rather clarify my feelings on the matter.

I want to say thank you to my friends who reached out in support, especially the person who wrote the above note (you know who you are).  It feels good to know that not everyone views me like the person who originally caused me to vent.

Social Media...Setting the Record Straight

Moving across the country has provided many challenges to me, and one of them is losing contact with family and friends.  The only link I have left now with a lot of people, including family, is through social media.  I Facebook quite regularly, because frankly it is my only lifeline to people in Minnesota.

I often use the "feeling" emoticon in Facebook to convey what's going on with me personally.  That being said, I learned a valuable life lesson today.  I am naïve.

I have some posts about my son's autism.  I recently used the "heartbroken" emoticon to convey how I was feeling about my son's first week of school and how it affected him so much.  My son internalizes things and is profoundly deep.  He is in a lot of pain emotionally, and just because his bruises are not on the outside of his body, doesn't mean he isn't wounded on the inside.

Someone relayed their opinion to me today that they find my posts about Corbin as too much attention seeking on my part rather than productive.

I am literally shocked that anyone would think that I would use my son's pain as attention seeking.  If I post that my daughter is in the ER being hydrated with IV fluids for nausea, I am not trying to seek attention.  I should not even have to explain why I post that.  If I post about feeling helpless, heartbroken, upset, sad, or frustrated about Corbin's autism, I am not trying to gain pity.  But, apparently not everyone sees it that way.

So, here's the deal.  If you think that when I blog, post, or talk about my son being on the autism spectrum, and that I am in any way, shape or form using it to get attention or to get people to feel sorry for me, or want people to comment pitying remarks, then you couldn't be more wrong.  I wear my emotions on my sleeve and that's a part of who I am. But if you're calling me a drama queen because of it, then you don't get me or know me at all.

Everyone is different and handles things differently.  If you don't want to see my posts about how I am feeling today, yesterday, or tomorrow, then by God unfriend me.  I am a sensitive person and I tend to externalize how I feel; everyone knows when I am pissed off, happy, or sad.  I have never professed to have a perfect life and I make mistakes every day of my life.  But this is me.  Take it or leave it.

I spent the morning upset because the person who accused me of using my son's autism as attention seeking hurt me deeply.  I shouldn't let it hurt me, because this person isn't close with me.  However, it hurt me all the same.  I love my child and it hasn't even been a year yet that he has been diagnosed.  That doesn't mean I am trying to overshadow my son's problems with anyone else's problems.  It doesn't mean I think my problems are more important or less important that anyone else's. I am simply stating how I feel.  If I bitch about Houston's traffic, somehow that's okay, or about my crazy neighbors and their Buddha shrine, then it's funny, but if I post about being sad about what my son is going through, I am seeking attention?  Oh, how naive I have been.  I guess I need to post more sunshine and rainbows to blow up everyone's asses.