Sunday, November 25, 2012


You  never really think about the significance of numbers...until you consider the life that asssociated with that number.  The life that, at times, has seemed so precarious and uncertain.
 You take special joy in the love of sisters...
 The thrill of opening new clothes.....
Sisterly dedication
 Showing off some new duds down to the boots.
 and even more love from cousins

 Grandmas who spoil you
 Daddy to cuddle you
 Friends that give you gifts to be silly with
 Mad dog cupcake fun...
 the joy, hope, and utter gratefulness captured in the click of a camera phone
ending with a big lipped candy pacifier smooch. Cards and phone calls..message and love from others.   Six years...a day we didn't know we'd have to celebrate.  Thank you God for your unending love, provision, and protection.  It isn't always easy or fun, but ALWAYS ALWAYS NEVER EVER taken for granted.  Happy Birthday sweet number five in my brood.  We look forward to another year and many more to come.

Tuesday, November 20, 2012

Let me tell you a little true story...

Events in the past week have caused me to really exercise my self control.  I have been extremely dissatisfied with recent problems regarding the poor service provided by other companies in reference to the life of Miss Lillian.  I try really hard not to be all crazy town on these people who are causing us some serious grief.  In my head, I'm always telling myself, don't go off...don't be unchristian.  It's hard.  REAL HARD.  Honestly I want to scream and holler and be belligerent, but that doesn't do much good, but relieve my tension...mostly.  Well, when we moved down to this small town, I immediately chose to move our pharmacy needs to the family owned pharmacy here in town.  Clearly I have not had success with the large chain pharmacies. This particular pharmacy actually has some commercials referencing their "personal, caring, approach" to your medication needs.  Shoot, they even deliver.  So, from the outset of using this pharmacy I have encountered this woman who is always the "check out" person.  She has barely spoken to me, NEVER smiled and I was quite put out one day as I watched her not help a customer who was really struggling to find what they needed.  ALbeit, she did point out the area..but she should have come down and helped the person in my opinion.  It got so bad with this woman that I actually started to dread going in there because I knew I would have to interact with her.  Quite honestly there were probably times when I was frenzied and not overly friendly...but most of the time I tried the kill her with kindness routine.  I even started trying to pick up meds at night because I knew she would already be gone. the Lord put it on my heart to pray for her...I figured her life must be something terrible for her to be so unfriendly and borderline rude, so I'd pray and have a better attitude about it...and still try to avoid her.  Two weeks ago, I went in and saw her back there and was dreading even having to talk to her.  I had Lil with me.  I want you to know this woman came down out of the pharmacy, talked...smiled...tried to make friends with Lillian.  I was absolutely stupified.  I kept thinking, hey remember me...the person you  seemingly dislike?? I mean I was nutty about it I was beginning to think she somehow had some grudge against me that I was totally unaware of. I just could not believe the differnce I was seeing in this woman.   Last week, I went in and there she was and I inhaled sharply prepping myself for the encounter.  As I approached, I noticed a scarf she was wearing and the first thing I told her was how much I liked her scarf.  Her response was she made it and then she told me she had brought a bunch in to work with her to try to sell.  wait for it....before I could say anything she went on to say that she was trying to make money to purchase a headstone for her granddaughter who had passed away.  I was speechless.  I purchased to scarves and told her I was sorry for her loss...she stopped looked at me, smiled and said, "she's in a much better place".  Wow.  What a revelation that day.  I've been praying for this woman for close to two years.  You just never ever know what someone else is going through.  As bad as my days might sometimes seem and actually be...I'm not saving for a headstone. 

Wednesday, November 14, 2012

Not everyday

but some days, the simplest things have to be so complicated.  Maybe the "simple" things aren't as simple as I think??  Example: My child's nebulizer machine bites the dust.  We've owned the machine almost 6 years.  I call the homecare place.  They just shift me over to someone else where I get no back and explain what is happening.  They tell me, "OHHHH, where'd you get the machine.  I tell them I'm not really sure, it's been so long, but perhaps praxair...then I say no..I think it came from (cr)apria bc that is who we started with.  They tell me to get an order and they will contact (cr)apria and find out about getting us a new one.  Ok, first off, if the machine is  under five years old, the company you got it from has to replace it free of charge.  Ok.  I am on the phone with this woman and she assures me it will all get taken care of as long as I get them an order and I will get a machine today.  As my daughter uses the machine multiple times a day. I ask, do I  need to call back and follow up on any of this..her reply..nope.  I say, I'm going to get it today, I need it today.  She says yep.
I'm gone all day.  Get home, have msg from the lady.  I call back,she tells me the machine is indeed over five years old and they are just getting me a new one from (cr)apria.  Now, friends, if you've been with us from the get go, you know how I feel about that company and will never give them another dime unless it is absolutely the last option I have.  Not a fan.  But here they are...just assuming and doing and not even asking ME, the customer where I want them to get the equipment. When I tell her no, I don't want it from apria, she then takes it upon herself to send it to some other small company in a town thirty minutes away that is already closed and may not get to it til tomorrow.  HELLO???  How many times did I tell the woman I needed it today???  Makes me want to pull out my hair.  I call a local (in my town) homecare company.  Call the lady back and tell her I want the machine from them to send the order to them bc I can for sure get it tonight.  She says...get it's right at 5 oclock.  She says, well, I'm supposed to leave at five so, I can't get to it. REALLY, she can't wait two minutes to for me to get a fax number called back to her?  Less than a minute later I call back with the number, have to leave a message on a machine, wondering and actually anticipating that I will not get the order to the local company tonight.  I show up at the local place and she was also clearly annoyed that I was coming in half an hour before her day was over. 
In the end, I know I have friends that I could get a machine from if necessary...but seriously.  This is the kind of system of things that I deal with all the time.  It's irritating and proves that these places don't give a hoot about my child.  Don't like your job?  Get a new one.  I'm sick of people who treat our life this way.  I'm sick of so called professionals being total failures.  Example: the manager from CVS called me and I'm not really sure what he wanted to hear from me.  I mean it was way past them doing anything for Lillian.  I'd already given her five overdoses.  He told me these type of incidences "go against" the person.  Really?  Just tired of feeling helpless.  I know people make mistakes, but we are talking about a whole bunch of people failing all the way around.  It's not ONE person who fills a script at the CVS.  Come on.
If you've made it to the end of this rant or whatever it is, thanks for hanging in there.  It's days like these last ones that make it quite clear to me why I'm nearly gray headed at the age of 36 and why I look in the mirror sometimes and see a tired face.  I understand why sometimes I feel like there is a piece of me that is missing and will never be the same. 
PS- she's still sick and coughing like a there's no tomorrow.

Saturday, November 10, 2012

what a day

Day before yesterday at 1:49 am, Lillian woke me up puking up her guts.  At first I just thought it was a cough that brought on a little throw up, but quickly found out that it was something more.  From then on, she went from every hour to every twenty minutes of throwing up.  It continued for the entire day and around three I remembered that I had a phenergan suppository in the fridge and gave it to her. I then called the pediatrician to see if I could get more.  Long story short, I finally got Lillian's actual doctor on the phone and after a brief discussion found that CVS had misfilled her prescription. So, without knowing I've overdosed her five times( four times in June  23 no wonder she remained so sick) on the drug.  The pharmacist  at CVS looked up the script and confirmed they did indeed fill it wrong.  She went on to tell me that i had no idea how bad it made a pharmacist feel to fill a child's medication wrong.  HELLO????  Try being the parent who administers the drug,  Thank God He has protected Lillian, but I wonder if this is what has caused her bowel problems.  She as quite catatonic-ish last night.  Looking very doped up.  She has not puked today yet.  I ran a twenty cc drip of pediatlyte through the night...she got less than ounce spread out over an hour.  She woke me at six this morning begging me for a drink.  A few sips of water and so far so good.  Her next real feeding is due at eleven, so that will be the real test.  Thank you for continued prayers and a quick apology to those I may not have responded to via text or fb, I was wiped out yesterday and we went ot bed quite early. 

Monday, November 5, 2012

Dr Heart Reports

After a long sleepless night, we were up early and headed to KY for Lillian's cardiology appointment.  She had an EKG and echo.  Both tests were good after Lillian calmed down.  Took a little while on the EKG.  She had equal pressures in her arms and legs and good femoral and pedal pulses.  The PFO is still open. He said he would pull her chest ct and see if her heart was truly enlarged..he said there can be discrepancies in the reading depending on who's doing the reading of the scan.  IF her heart is truly enlarged, they will want to see her again in a year, if not we are still on the two year plan unless symptoms arise.  Woo hoo for a good report.  He really is an awesome cardiologist, so personable and sweet to Lillian.  He just kept saying how cute she was.
Happy mom, happy girl, happy hearts!!!