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.

The Waiting Game

So a week ago Friday the call was made about getting Anastasia her insulin pump.  We filled out paperwork, and emailed it back to the representative.  This Friday we received a call back from a different rep (actually the one we were dealing with in June when she was first diagnosed).  He said all we were waiting for was the insurance company, and that would be finalized either that day or Monday.  We of course have questions (i.e. how much is this going to set us back) so Alex called back and of course we are still waiting for a response.  I guess we'll hear about that on Monday too.

So what happens now...well once we finally get the pump shipped out we then have to set a date to have someone come to the house and train everyone on how to use it...then and only then will we be able to use it.

It just honestly seems like we are always waiting for something.

I don't ask for a lot, but please pray (or send good thoughts) that most (if not all) of the pump and supplies are covered by insurance.  Anastasia is so set on having "no needles" so I would really like to let her have her wish.


Edit:  insurance is going to cover about 2,000 of the pump (its about 6000).  Please pray we qualify for  financial assistance as that will drop the cost we owe down another 1100.

Relieved but still impatient

So Wednesday we went and had the follow up blood work to our appointment from last week.  So stressful!  Thank goodness both Alex and I went because he ended up holing Anastasia while I held her arm out.  They took 5 or 6 vials of blood, I don't remember how much to be honest.  Then we were done and on our way.

I felt so bad for torturing her this way that we went to Wal Mart and bought her a stuffed Bubble Puppy (from Bubble Guppies), and also an Easter Dress.  Today after Alex and I both played phone tag with the pediatrician's office we finally got the results back.  Everything looks normal.

I am so relieved!  Well except for the fact that my daughter probably has alopecia, Now our pediatrician, (who by the way I love...she is the one who sent us to the ER in June when she knew something was not right with Anastasia) is looking into finding us a dermatologist who takes our insurance.  So thankful that she is doing the leg work on this one because it's frustrating sometimes finding a doctor!

I am impatient though because I just want this resolved...but at least its not another auto immune disease so I am thankful....