It's here It's here...

Well after weeks of waiting for approval and trying to figure out how to make the fiances work Anastasia's pump arrived.  Now what do we do...we wait some more for a trainer to call and set up a time for us to learn how to use this high tech device.

I am a huge mix of emotions right now.  First of all it's competition week so I am stressed out about that.  Then the day after my chorus competition it's the March of Dimes walk so I have to make sure all my ducks are in a row with that before Saturday.

Just a lot going on, I'm trying to take it one day at a time, but if you know me you know that is hard for me to do.

Thanks for reading, I hope you know how much I appreciate it!

All Aboard the Choo Choo Train.....

Anastasia was about 1 when she discovered the Disney Jr musical short Choo Choo Soul.  I had known about them for a couple years because when we lived in our apartment and decent teeny bopper shows were on Disney Channel, I always ended up catching their video for Freeze Dance.  If you know anything about Anastasia you know she loves music in general.  So everytime the short came on, everything stopped so she could watch the TV.

I started finding the videos on YouTube and one morning I happened to find their live performance at the National Book Festival from a could of years ago.  I was impressed with it, especially at the fact that it was hot out, and here is Genevieve Goings dancing around with a Polyester Train Conductor outfit on and she is proud to do it to prove she can be a good role model without showing alot of skin.  I always said if they were in the area I would do my best to get Anastasia to a show.

Then the diabetes came...we caught Choo Choo Soul a couple times when she was hospitalized in Albany and there was really no reaction.  Usually she would be singing and dancing around, but this time nothing...

June 17th we were released from Albany Medical Center and we went to run some errands.  I wanted to thank my boss for being so understanding throughout the emergency and to let her know we were home.  We put our Choo Choo Soul CD on. When her favorite song Animals on the Farm came on, she started singing.  Alex and I both knew at that point that Anastasia was getting better.  I remember crying because I was so happy.

Fast forward to February of this year, on the Hudson Valley Moms board on Facebook a mom mentioned that Choo Choo Soul would be performing at a theater 40 minutes from us.  The tickets were a good deal so it was a no brainer that we go.

The show was today and I cannot tell you how wonderful it was!  It was so entertaining for the kids and parents alike.  I will never forget the expression on Anastasia's face when she saw Geneveive LIVE!  It was priceless and so happy.

The last song was their version of When You Wish Upon a Star and Geneveive said that her wish was to meet every child who came to the show afterward.  So after we waited on line to meet them.  I have to say they are the nicest people I have ever met.  I would post the picture that we took with my husband in it as well, but I look weird in it.

If you have toddlers or kids who love the show you will love it live.  Both Genevieve and DC were so personable and fun!

So Thank you Choo Choo Soul for a very memorable day!  My whole family loves you and I don't think that will change any time soon!!!!

FYI if you are curious about the music that's performed here is a youtube link to one of Anastasia's favorites Numbers

The Battle of the Syringes

So last week I did the usual refill for Anastasia's insulin syringes.  The picture in this post is the box we are accustomed to getting.  I go to pick up the syringes at Rite Aid and go along my way.  I finally crack into them about 2 days later and find they are not 1/2 units but full units.  I figure a mistake was made since the order numbers are very similar and I pray they will allow me to return the boxes even though I opened 2 of the packages in one of the boxes.

Well returning them wasn't a problem but we were told that BD no longer makes the syringe.  Well first I was told that the script was for full unit syringes which I know was wrong.  Why did the last refill give me 1/2 units when supposedly my script wasn't for it???

Anyway after much arguing Alex got involved and we left with 2 boxes of (supposedly) 1/2 syringes that had an 8mm needle (we were using 6mm previously)

At this point I am furious.   I don't want to stick Anastasia with an 8mm needle.  I know it's only 2mm longer but to a toddler that's alot.

So Alex and I decide to try to find another pharmacy to meet our needs.  We try Target first and the pharmacist found what we were looking for.

So I call Albany Med and get her script transferred over.  Target calls me and we go over all the insurance info and I'm told because I just picked up syringes last week they won't be covered.

Really??!! So Alex & I decide we'll eat the cost of 1 box and have it ordered.

Wednesday I go to pick up the syringes and the pharmacist tells me the script that was sent was for 2 boxes bit we only ordered 1.  I explain that the other pharmacist told me it wouldn't be covered so that was why 1 was ordered.  He then tells me that our insurance covered it & that he ordered the second box as well.

:-)

It's the little things some times...

So then he wants me to ensure that they are what I need.  I look at the box...and it's the same BD syringes we have been using for the past 8 months.  The ones Rite Aid claimed that BD doesn't make anymore. 

Oh and those 8mm syringes...when Alex opened them up he found they weren't 1/2 units either.

Gotta love it

A Letter to my daughter on her Third Birthday

To my Baby Anastasia,

Where did the last 3 years go?  I cannot believe that in a few short hours you will start the third year of your life.  I truly hope the next year will be better than the last.  You have had so many trials in your short life, trials I wish I could take away for you.  You were diagnosed in June with Diabetes, it felt so wrong to see you in a hospital again, after you spent your first 37 days there back in 2012.

You have taken this new challenge like a champ though.  Yes I know the insulin injections must hurt, as well as the finger pricks, but you are braver than I am.  I don't think I could ever bear the pain continually.  I hope that the approval for financial aid for your pump comes soon so we can stop giving you so many needles.

I love watching you grow, your little personality is coming out more and more every day.  You are becoming more outgoing and you definately are not as shy as you were last year.  Today you are clinging to your stuffed Lambie, and Pokemon Rabbit...who knows what you will cling to tomorrow as it seems to change daily.

You love chicken nuggets, fries and white dip (Ranch dressing).  I think you would eat it every meal if you could.  You love cooking with your stove top and any time you go to Alora, Sophia or Maya's house you play with their kitchen sets.

You are starting to become a little bratty at times, it hurts Mommy when you get like this.  I don't like it but I have faith that it gets better as you get older and understand a little more what you are doing.

I wish I knew what else to say, but I don't.  The only thing I can say is how much I love you and wish you lots of fun and happiness this coming year.

Love,

Mommy

I'm so done

I use this phrase a lot when I'm frustrated.  Right now I'm feeling this way.  I wish I could express why in particular I feel this way but I think its a bunch of things, not to mention the stress of the whole pump situation that's just getting to me.

Usually around this time I am hardcore fundraising for the March for Babies.  This year I feel like I don't even care. 

I just feel wiped out.  I am trying some work at home data entry.  It doesn't pay much but its a little extra.  Which helps.  Not too much else going on...oh except some little girls 3rd birthday is coming up...more on that next week...

My story so far.

I realize over the past couple of days that I have had a lot of traffic on my blog.  Wow what a shocker when I kept seeing the hits go up.  I know a lot of that has to do with my friend Diana sharing the link to my blog and to my gofundme campaign on her blog's Facebook page.

In light of that I thought I'd give a bit more background information.  Our lives were not always this down and out.  Prior to 2012 I was the Assistant Manager of a Borders store.  When they liquidated in September of 2011 I not only lost my job, but my husband and I lost our apartment.  Our land lady just didn't want to help us out while I looked for work.

So we moved in with my parents.  Then in October I discovered I was pregnant.  Perfect timing right?  Looking back on it now, I can say it truly was.  I was due in June but I started having elevated blood pressure.  March 30th 2012 I was admitted to the hospital, although I felt perfectly fine.  Well on April 2nd I started going downhill with the heartburn that didn't want to end.  April 3rd I just felt awful and late that evening I felt so bad that I pushed the on call button and was then transferred to labor and delivery where I waited (high on a kite on morphine).

At 8:30 am on April 4th the decision was made to deliver my daughter Anastasia Zalene via C-Section.  She was 9 weeks early, weighing 4 lbs, 5 oz and was 17 inches long.

Ana had a 37 day stay in NICU and thank God I was unemployed because I visited twice every day. 

In November of 2012 I finally found my current position as a PT key lead at Hallmark.  I am lucky it is such a family company because in the past when I had not put myself and my family first I finally could.

So we didn't have a lot of drama in 2013...not that I can recall anyway.

That brings us to June of 2014.  June 6th I noticed that Ana wasn't her usual perky self.  She acted lethargic and very clingy.  She didn't want to walk or do anything that required energy. 

I thought she was just sick and let my husband know before I went to work that evening.  About 2 hours into my shift he called to tell me he was bringing Ana to the ER.  Her breathing seemed labored so he was worried.  I left work (after being kicked out by my boss), and we spent hours there to find out it was an ear infection.  We got antibiotics and went on our way. 

June 9th she didn't seem better so we went to the pediatrician.  There she was diagnosed as having a double ear infection.  More antibiotics are prescribed and again we are home.

Ana still isn't improving.  I call the pediatrician again on June 13th (Friday the 13th) and get an appointment with her primary doctor.  She tells me we need blood work and we need it now.  You have to go back to the ER and demand blood work and a urine sample.

So we head there, and wait.  Finally she is diagnosed as having Type 1 Diabetes and she was also suffering from diabetic kytoacidosis.  Had I not been persistent she could have died.

She was so bad that she was transferred from Vassar Brothers Hospital to Albany Medical Center by their (Albany) own team.

So now every 3 months we go to Albany to her endocrinologist.  She has been doing OK but the 5 injections of insulin are getting to her.  An insulin pump is more accurate and will help us have an easier time trusting people outside of our family to care for her.

So that's the story...

Just a note if you are interested in donating to our gofundme campaign the link should be on the right side bar.

Thank you for your interest, prayers and positive thoughts.  It truly means so much to me.

Overwhelmed

I'm embarassed to say, but I had a meltdown yesterday before my shift at work.  The fact is that we are now facing being 10,000 in debt not to mention the $260 we will need to have every 3 months to keep up with the pump supplies.  I managed to have a headache for 24 hours (Monday into Tuesday), pretty much due to the stress of this bigger financial burden.  In an act of desperation I started a gofundme fundraiser.  I did so after alot of thought.  Truth be told I really wanted to do it 8 months ago when the bills started rolling in, but me being me I thought it was selfish to do it for myself.

But I cracked and have been overwhelmed by the response I have gotten.  A former co-worker of mine donated right away.  Many of my Borders family started reposting my original post, my old friends from scouts as well.   The support from you all is amazing, and I hope you know that.  I am still researching some funding, and if we qualify for the financial aid (and we should) it will drop the price about $1100. 

I think I need to add that all these numbers are basically 50% of the total bills (the other 50% was covered by our medical insurance).  I was planning on using our tax refund to offset what we owed to the hospital (s), ambulance company, drs etc, but now I need to use it for the down payment of our pump.


I just want to thank you all, for what ever you have done for me, whether it be a prayer, positive thought, a share, or just a "hang in there."  The support means so much to me.  I am so very very blessed.