Sunday, May 27, 2012

A Tale of Two Scaleys

This is Scaley.
He was purchased as a gift for Carson while on a "mommy and me" trip to California with my little girl, Amanda.  She found him while browsing the souvenir shop at the Long Beach Airport. Carson has a love for sea turtles so Scaley was the perfect thing to bring a smile to his face.

We had no idea just how important Scaley would be to Carson.  Scaley became Carson's constant companion.  They went everywhere together.  Whether he was  in school, scouts, speech therapy, math tutoring, or just playing, Scaley was there.
One day the unthinkable happened and Scaley was lost.
We looked everywhere for him but had no luck.
Carson was crushed.

A few days later, Carson asked if he could go on a mommy and me trip to Long Beach.  I told him that I would start looking for airfare deals and we would plan a weekend away.  (I had forgotten about Scaley by then, but Carson had not.)  It wasn't until we touched down that I realized the whole purpose of this trip.  It was to replace his beloved Scaley.  Our first stop was the souvenir shop where the shelf where the turtles had been now had dolphins displayed.  This was the beginning of a weekend of disappointment for my little guy.

We ended up going to the Long Beach Aquarium in hopes we would find a new Scaley.  No luck again.  We purchased a "second best" turtle and decided to spend the weekend looking for a Scaley.  For the entire weekend, we looked for the little stuffed turtle in every shop we frequented.

We ended up back in the airport at the end of the weekend and still had no Scaley.  Carson was so disappointed and my heart went out to him.  We decided to check the souvenir shop one last time.  Still no Scaleys on the shelf.

A very sweet employee named Laura, commented on the "second best" turtle that Carson had in his hands.  We told her of our plight and how important the little sea turtle was to Carson.  She knew exactly what stuffed toy we were talking about and said that she knew there were some in the warehouse.  She was clearly short handed and very busy.  There was no way at that time she could leave the shop.  She asked for our flight information and said she would try and get one to us at our gate.  Her kindness and willingness to go the extra mile for my sweet son isn't something you see very often.

We got through security, found our gate, and waited for our invitation to get on the plane.  Soon, the announcement was made for us to begin boarding.  Carson was visibly disappointed that we were not successful in finding a replacement Scaley.  The line to the plane was long so we decided to just sit and wait for people to get in their seats.  Just as I thought we were going to have to give up and board, I see Laura...She is running through security, straight to our gate.  She had a bag with her that had not one, but two, Scaleys for Carson to choose from.  Tears filled my eyes as I thanked her for her kindness.  She really made an impact in a little boy's life.  I don't think she knows how much that meant to me, and to my sweet boy.  I don't think I've ever seen Carson so happy!  Carson picked the perfect Scaley, we made our purchase, and a very happy child (and mom) boarded the plane.  The kindness of one person will never be forgotten.

Carson and Scaley are once again, a team.  They go everywhere together and Carson is happy.
Thank you Laura for just being you!
You deserve a raise...

Tuesday, May 22, 2012


Malia Michelle

Twenty four years ago, my sister gave birth to the most beautiful little baby girl.  She gave her the name Malia Michelle in my honor.  I fell in love with her the minute she was born.  Little Malia's beautiful crystal blue eyes glowed off her porcelain skin and her incredibly long black eyelashes went up to her eyebrows.  People stopped wherever we were to look at the gorgeous baby.

When Malia turned 14, her parents divorced.  Her world was turned upside down at a time when a child is incredibly vulnerable.  In order to numb the pain of her father's absence, Malia turned to alcohol.  At first, she hid it well from those closest to her but, it would soon become a habit that would take over her life.  For the next ten years, she regularly drank herself into total oblivion.  Many times she would call one of her siblings, her mother, or me to pick her up from an unknown location in the middle of the night.  She would be so intoxicated that she didn't know where she was.  As a family, we feared for her life.  Every time she left home with friends we wondered if she would return.  Many bad decisions caused heartache and pain to herself and those of us who truly love her.  We wanted nothing more than to see her sober but, she continued to use alcohol to escape.

A decision to drive drunk was the beginning of her brushes with the law.  She was caught driving the wrong way down a busy highway in the middle of the night.  God was really looking out for our precious girl.  Instead of being killed in a head-on crash, an officer put his car between her and an oncoming car.  She was arrested, received a fine, probation, and mandatory drug and alcohol testing.  Instead of complying with the terms of her probation, she took a turn for the worse.

One night, while in a drunken stupor, she swallowed a bottle of Klonopin and then took a bath. Her mother was awakened at 3am by a young man who, at that time, was Malia's boyfriend. He was worried as he had just been on the phone with Malia and things were obviously not right. Jeanna (my sister, Malia's mom) found her baby girl in the tub, passed out. Somehow, Jeanna managed to get her out of the tub, into the car, and to the emergency room. Malia had earned herself an ambulance ride to a bigger hospital, and a stay in the Shock Trauma unit. She was placed on a ventilator because she was unable to breathe on her own.  Her alcohol level was 2.45 (legally drunk in our state is .08.)  Seeing her in that bed, with a machine breathing for her, was incredibly scary.  She looked small and helpless.  I prayed that this would be the turning point in her life. If she had spent just a few more minutes in that tub, this story could have ended right here.

As time went on, Malia continued to drink and avoid her probation.  An arrest warrant was issued.  Things began to completely fall apart.  She could no longer get state issued ID, which meant she could no longer get a job.  The warrant hung over her head at every turn.  She talked on several occasions of turning herself in and getting sober.  Then it happened.  She drank herself into a stupor and then drunk dialed the police and turned herself in.  Another arrest, another appearance in front of the judge.  This time, the judge did not screw around.  The fine had to be paid, the mandatory drug testing followed, or she would spend 180 days in jail.  Thank God for that judge.

Malia's strong will and spirit of determination finally kicked in.  The threat of 6 months in jail was enough to motivate her change.  At first, she counted her time sober in days.  I looked forward to a daily text with the number, one more day without alcohol.  The days became weeks, the weeks became months.   The look of hope returned to her eyes, her personality returned, and her smile became brighter than I've ever seen.  She worked hard and made regular, weekly payments on her fine.  She never missed her mandatory drug and alcohol testing. 

In the midst of all this, she met a man named Will.  Malia and Will are good for each other.  She is happy.  She has dreams for her future.  Dreams of a home, children, family.  Dreams that could so easily have been wiped out.  Dreams I am so excited to see her fulfill.

A sober and happy Malia at this year's Colorfest.

Yesterday, my sweet little blue eyed baby niece and her man Will, packed up and moved to Oregon.  She is on to a new chapter in her life.  I cried when I said good-bye to her.  The tears were those of sadness, joy, and gratitude.  I will miss her but, I really want her to do what makes her happy.  Truly happy.  I'm so incredibly proud of her and her accomplishments .  Proud of her strength and spirit.  Proud that she holds her head high and is proud of herself.  She has so much to offer, so much to give.   

Enjoy your freedom sweet girl, for you truly are free!  Always know that your family is here for you and we love you more than words can say. 

Friday, May 11, 2012

Coming Up Short

My children have always been small.  Their weights at birth (13 weeks early) were 2-6, 2-3, 1-13, and 1-11, and they didn't exactly hit the genetics jackpot for height.   As they've grown, the identical twins have really lagged behind the other two.  I always thought it was a result of their poor eating habits and put a lot of pressure on myself to try and get them to eat.  However, their appetites were almost non existent and you just can't force feed a kid :o(  Their last trip to the pediatrician triggered a referral for all three boys to an endocrinologist because of their lack of growth.  Amanda has always been a champion eater and although she is also small, she is at least scraping the bottom of the charts.  Unfortunately, the boys growth curve hasn't been much of a curve at all, rather a flatline. Jaxon height wasn't as much of a concern but he is still not growing at an average rate.  All three boys were sent for initial blood tests.  The twins tests showed problems that needed further examination so they were admitted to the Rapid Treatment Unit at a local hospital for a six hour test.  Jaxon's growth factor levels were low, but not low enough to be alarming so he squeaked out of the big test...
Both boys were given blood pressure drugs that made them very sleepy.  This simulates what happens at night when children sleep which is the time their bodies make growth hormone.  Blood was drawn every half hour for four hours.  The boys slept through most of the test.


Jaxon and Amanda came along as "support."
Even Daddy took the day off work for the boys!
We waited a week for the test results.  I wasn't quite sure how I wanted them to come back because if they were hormone deficient, it meant expensive shots twice a day until puberty.  But, if it came back normal, we would be back to the same grind of trying to force feed kids that were't hungry and trying to get calories in them any way we could.  When the call finally came in, the twins were diagnosed with Severe Primary Insulin Like Growth Factor 1 deficiency, or IGF-1 for short, (no pun intended.)   It's a really long way of saying that they make enough  actual growth hormone, but it does not metabolize into a growth factor that is primarily responsible for bone length.   Bingo!  We finally know that it isn't our fault that the boys are so small.  A relief and yet stressful all at the same time.  It's a little overwhelming to find out that your kids will need shots for the next 7-8 years, I have no idea how those who have diabetic children handle it.  My heart goes out to them.

A couple of weeks later, after the treatment was approved by our insurance, our packages arrived...

One huge box for each boy containing a total of six vials of Increlex, 200 needles, two sharps containers, and two boxes of alcohol wipes.  We were ready to go!
It was kind of like Christmas when you get a gift that you really don"t want.  I almost hyperventilated because the specialty pharmacy sent the medication in two separate boxes instead of consolidating into one.  I really HATE waste and that just seemed silly.  Seriously, did you see the size of those boxes?

In an attempt to not make this story any longer, I'll just say that the twins have adjusted better than I had expected to their shots.  The medication is working well.  Both boys have grown considerably in the last six weeks and they finally have appetites now that their bodies are growing and calling for calories.  We are still watching Jaxon as his growth is poor but his blood levels of IGF-1 are not low enough to qualify for treatment.  It's quite expensive ($800-$1000 per vial) so insurance has very strict requirements that patients have to meet before qualifying for treatment.  The dosage is weight based so as they get bigger, the dose goes up.  Mason has already gone from needing 3 vials per month to needing 4.  I'm grateful for the weight gain but the cost is always in the back of my mind.  I would be sick if our kids medical costs caused our insurance to not renew with our entire company.
Mason taught himself to do his own shots last week and has since taken over the responsibility of giving Carson his shots as well.  He is very proud of himself.  They understand that this is a long term treatment that they will likely be on until 17 years old or later.  Once their growth plates close, the drug will no longer work.  The growth plates will be monitored with yearly x-rays.
I just have to keep reminding myself...One day at a time.

Wednesday, May 9, 2012

Just Bitching

Today I feel so defeated.  I texted my walking buddy, told her I didn't feel well and skipped my early morning walk.  The dog cried for what seemed like an eternity because he really wanted to go (why can't I have the same enthusiasm for life as my dog?)  I slept in and allowed the kids to skip school.  My house is completely trashed and I am spending too much time on the computer and eating chocolate.  I've gained 5 lbs and really don't need to be eating candy.  I need to finish painting the basement, pull up the rest of the water damaged flooring, and seal the concrete. (The basement flooded a couple of weeks ago which forced me to do work I had been putting off.)  My kitchen floor needs to be mopped, the dog needs to be brushed, my flowers need to be planted outside,  my suitcases need unpacking from my trip to Long Beach with Carson over the weekend  and I need to drain and re-fill the pond.  My taxes got screwed up and the IRS sent me a "please send money including penalties" letter which I do NOT owe and I need to get it straightened out.  My 7 month old camera broke while on a Mommy and Carson trip.  (I've taken Amanda and Carson on their own separate trips and plan on taking the other two soon.  Blogging about them is yet another thing I need to accomplish.)  I think you should get more than 7 months out of a camera that you paid $300 for.  Fortunately, it's under warranty so I can get it fixed but I have no motivation to take it to the camera shop downtown.  I took some pictures on my phone but can't transfer them to the computer.  My cupboards are bare.
Things just suck right now.   Mommyhood is kicking my butt.  Life feels so overwhelming and impossible.  I feel like an incompetent mom.  I think I'll just go back to bed and start again tomorrow.  Maybe my fairy Godmother will show up and take care of things while I sleep.  
Hey I can hope, can't I?

Thursday, May 3, 2012

47,000 Mile Maintenance

 Earlier this week, I had an appointment with the doctor.  I needed to be seen for what might be either allergies or what would be my first ever sinus infection. (Don't worry, I really am going somewhere with this and it won't be a post entirely about snot.)
The night before the appointment, I realized that there are several things that need attention.  Being the type who hates wasting a trip, I composed my list. A thyroid that needs re-checking, a big toe that rudely became the victim of the sharp end of galvanized chain link being jammed up under it's nail, unexplained bruising, a plantars wart, my aching back and neck (that I threw out sniffling of all stupid things, but again NOT a post about my nose...) 

I placed the list in my purse and decided to discuss all these things with my doctor the next day.  I've been seeing this doctor for some time now and I feel free to be myself around him.  We have no problem joking around with each other and he understands my craziness and sense of humor.  I showed up for the appointment thinking they must love patients like me who have their list of concerns written down and organized so they can be quickly addressed.

The nursing assistant called me in from the waiting room.  "What are we seeing you for today?" she cheerfully asked.  I proceeded to unload my laundry list of items.  After taking a page full of notes and patiently listening to my many ailments she said sarcastically "Uh, Michelle, you only get a half an hour..."  To which I replied  "Yes, but the doctor gets paid by the procedure so he should be overjoyed to see me today...I guess he'd better hurry!!"
So, she gave me a tetnaus shot.
I guess that's what happens when you are a smart ass while at the doctor ;o)
Then the doctor froze (burned) the wart on the bottom of my foot.
It seems my remark was punished twice.

After spending an hour with my favorite doctor and CNA, I felt that my list had been sufficiently addressed and it was time to leave.  I chatted a little while longer with the office staff that I love so well, ran out to my car, and drove off.  Half way home, my head began to throb and I realized that one thing had not made it on to my list and therefore I had forgot to mention.
Yep, that damned sinus infection!

Next time I go in, this is what I need examined.