Sunshine

alexa in her dudu

You are my sunshine
My only sunshine
You make me happy,
When skies are grey
And no one knows dear,
How I love you ,
So please, dont take my sunshine away...

The simplicity of this sweet song depicts exactly how I feel about Alexa.  Sometimes I get so wrapped up in how sad I am.  I just have to look up because the source of my sadness is also the source of my greatest happiness.  Alexa's laugh just bubbles out of her. She has this inner joy/ peacefullness that I find myself taking solace from. 

The last 2 months have been bitter sweet.  Alexa has started putting on a bit of weight.  Which means no CVL/TPN at least for now.  I'm happy she was able to bulk up a bit before the winter and flu season hit.  Which officially started in this household 2 weeks ago.  So lets keep our fingers crossed that she bounces back form the latest illness at least maintaining her weight. 

There has been a lot of drama in the Bennett household lately....  So, nurses...  Both a blessing and now a curse.  I have to say its very hard getting used to people being in your home / private space all the time.  Never being able to have a conversation privately or lounge around in your pjs just because you can.  It got to a point where I was more exhausted dealing with the nurses being here than when I was here alone.  At least alone everything was done my way...  Alexa has had 4 nurses so far but one quit to take care of her dad (we loved her) and one of the others we ended up firing.  Let me tell you it wasnt pretty. 

Getting comfort from her buddies

All the nurses have different personalities and with that comes different strengths and weaknesses.  I accept that just as I accept that not everything will be done my way, but doesnt mean I dont want it to get done.  You know what I mean.  Anyway after having the nurses here for about 5 mths I realized I needed to change some things.  I decided to make a schedule.  This just outlined Alexa's day and any medical necessities she needed such as dressing change, cough assist, chest PT, meds, ect.  There was nothing that was not a medical necessity on the schedule I assure you.  I was not asking for my dishes to be done or anything like that.  I just wanted Ali's day to go smoothly.  I wanted her to have a routine so she would feel she had an understanding of what was going to happen next.  I also was going to start work so I wanted Alexa's nurses to know exactly what was expected of them. 

Cousin Kira

I spoke to the nursing supervisor on one of her routine visits to make sure this was an ok idea.  She assured me it was a great idea, and to do what I was comfortable with.  I sat each nurse down explained that although they were doing great, and we had no complaints we just wanted everyone to follow the schedule.  So that way everyone was on the same page everyday.  Two of Alexa's nurses accepted this with no problems, stating they thought it helped.  The other didnt say anything, but all of a sudden her attitutude changed completely.  She started making nasty comments to me.  To the point where I would leave the room to call Kevin and complain to him.  It was getting to the point where I was uncomfortable in my home.  She would refuse to answer direct questions reguarding Alexa's care, and just always seemed angry.  Like I couldnt approach her.  Kevin and I discussed things and decided to have a sit down with her to see if we could get to the bottom of things.  In my head we would work everything out and everything would go back to the way it was.  She instead got very defensive and started saying all this stuff about us.  Until I asked her to leave as she was making me and my family uncomfortable. 

Orsey!!!

You would think it would just end here... but no.  She decided to call DCF on us.  She made claims that we were neglecting our children.  That it was an unsafe environment for Alexa.  She stated we had to many animals and something about animal carcasses....  I dont what else she said but it boiled down to a bunch of lies.  Of course this is devestating for our family.  As she knew it would be because she knew what we had gone through before.  When the man from DCF came to our door he actually laughed and told us that they get vindictive complaints all the time.  It's just sad that someone would abuse their position that way.  Everything she claimed was unsupported but still.  Now there is a record that they even came to our house.  It brought back so many awful emotions.  I've been in a pretty bad state over the whole thing.  Not to mention that the company she works for I currently work for as well.  I mean this is going around the place I work! 

Anyway this was about 6 weeks ago and we still dont have those nursing hours filled.  It's been kind of a nice break.  But now as Alexa starts getting sicker it'll be nice to have some more help.  Especially with me working more.  The one thing I've learned from all this is to not get to attatched.  Be friendly and open but not so much so.  I'm taking the emotion of feeling bad or hurting someones feelings out of it.  If I get a funny feeling or if something is not going the way we would like.  I will not hesitate to call the company and have the nurse replaced.  Although this time I'll let the company do the firing.

cousin Ella

Alexa just got her wheelchair in.  She loves it.  It's great because it has a smaller base for in the house, and a nice tray so when she's tired she can sit in there and do all sorts of activities.  She was also blessed with an ipad through the state.  This has been wonderful for her.  We're going to be getting a special app that will help with her language and basically be her voice.  It's neat because she'll have a bunch of pictures to pick from and she can put them together to make sentences and it will actually say out loud what she wants.  We dont know which app we're getting yet because I havent done enough research and we're going to this special augmentative clinic in Boston to help us figure out which one works best for her.  I'm hoping that this cuts down some of her frustration when trying to express what she wants. 

The ipad is also great for her because unlike most other 2 years she cant just run from toy to toy without paying a high price of exhaustion.  She has limited energy and needs to use it sparingly so her body can function to do the things she really needs it to do, like breathe.