Happy New Year

So clearly I haven't kept my word about posting regularly.  Perhaps with the new year I can change that. 

It's been a crazy holiday season.  For those of you who don't know I work for a Hallmark Corporate Store so I am right in the heart of the hustle and bustle of Christmas.

In the middle of December I caught a cold from Anastasia, surprisingly it didn't affect her sugars too much.  For a couple days right before Christmas I had very little voice. 

I've finally gone to the Dr  and will hopefully get better soon

As for Anastasia we've had some ups and downs.  Christmas was fun for her this year.  I bought her the North Pole Communicator and we talked to elves and Santa & Mrs. Claus every day in December.  She loved it!  I highly recommend this to anyone who has a young believer. 

We are now trying another treatment for her hair loss.  We can see that the new cream is reacting with her head but I'm not sure if the hair growth will start or not.  I just keep praying.

Mid December she came down with an ear infection but she recovered well.  Thank goodness!  Her A1C is still a little high but hopefully it will be in check real soon.  We'll find out in March.

I hope the new year treats you all well.  I'm hoping for good things, but we'll see.

My friend Diana

So just before Anastasia was released from NICU back in May of 2012 I was a part of an online campaign called Hearts for Diana.  It was just to show a woman whose water broke when she was only at 20 weeks.  Her twin boys Julian and Preston were born shortly after and did not make it.  The following year she was expecting Kaden.  She delivered him at 37 weeks.  However after 3 weeks of fighting for his life, with a heart that failed him due to virus she lost him too. 

Through all this Diana has been one of the most faithful and honest people I have known.  I am in awe of her strength and conviction.

Now she is expecting a little girl Charlotte.    Today is the day she's going to deliver her.  If you pray please keep Diana, her husband Sam, her little girl Bella and all the doctors and nurses that will attend to her.  Pray for Charlotte that she is healthy and will come home to the family that wants her so badly. 

If you don't pray please just send all the positive vibes you can muster.  If anyone deserves it it is this family.

How I spent October 22, 2015

So it's Back to the Future day.  For those of you who don't know today was the day that Marty McFly and Doctor Emmett Brown traveled to and Marty had to save his son from doing something dumb so that he didn't cause the rest of his family go in a downward spiral. 

I wish someone could have prevented the downward spiral that was today.  Yes I'm sitting here again feeling sorry for the hand that has been given to me. 

We had another endocrinology appointment today.  But when Anastasia woke up she was shivering...I almost cancelled...perhaps I should have.  After a dose of Tylenol she seemed better.  So we headed to Albany.  Well our appointment went okay but she was due for blood work.  That meant going down to the blood lab...and getting them to draw 4 vials of blood.

Yeah that went well, they had to take the blood from the vein in her hand which hurts pretty bad as an adult, I can only imagine how bad it was for a toddler. 

I am so tired of being positive about everything with this stupid disease.  I'm tired of hurting my daughter on a daily basis just for her to live.  It's exhausting.  I know I know I do what I have to do, and I really do.  But days like today make me want to just have a good cry.

I'm sorry for another sad pity me post, but sometimes it's the only way I can get everything out so I can just move past it.

Breaking down

I am at the end of my rope right now.  Granted in a couple of weeks (or maybe days) I'll be back to my perky happy self, but for now I am overly stressed and upset at things I know are out of my control.

The dermatologist appointment went just about as expected.  Officially diagnosed with alopecia univertalis.  It's very hard to treat, even worse with someone as young  as Anastasia.  However for now we are trying a steroid cream in a small part of her head for a few weeks to see if it helps.  He is also going to ask his colleagues at Columbia Presbyterian for some insight.

I keep thinking what on earth could I have done to cause this to happen to my baby?  Yes I know it's nobody's fault but I wish it was just so I can blame someone. 

So we have this stressing me out as well as Anastasia just not behaving for me.  I can't tell you how many times I have been talked back to for the past few weeks.  It kills me.  I have pretty much had it.  I wish I could go one week without her being a snot to me.  It's all just part of being a parent I guess.

Right decisions

So last post I talked about how frustrating it is that people think that Anastasia has cancer because of her baldness.  It was a vent, I admit it.  I tend to use this blog to get things out and if people get annoyed at me about it oh well.  This week I finally got the nerve to call a dermatologists office and see what we can do.

I'm hoping they can help, praying they can.  As superficial as it is, I cannot look at pictures of Ana from last year and not get upset with myself for not doing something sooner.  She had a full head of hair and it's now wisps, if that.

So if you can on October 7th please keep us in your thoughts as we take her to yet another doctor (which I really wanted to avoid because I am so sick of taking her to different doctors for things....what parent wants to take their toddler to 3 different doctors), and hopefully get some answers and if we are lucky a resolution.

My daughter doesn't have cancer, thanks for asking.

The past few weeks Anastasia has gotten stared at alot.  She has pretty much no hair on her head so of course the common perception is that she has cancer and she lost her hair due to treatment.  I've had strangers look at her and say "oh no!"  It's so very frustrating to me as her mom to have to get the people who say something to me to stop assuming and realize that her hair loss is a weird side effect of diabetes. 

I have an extra pay check in October so I'm hoping I can find a dermatologist to take her to. 

Hats are my best friend right now.  Luckily she loves wearing them.  When she wears them you can't tell she's bald. 

At least she's happy though, that's the most important thing.

Crazy Summer

So it's been a while.  Almost a month since I've written here.  Anastasia loves her new bed and hasn't slept with us in about a month!  Nothing new is really going on.  Still adjusting numbers with the pump.

Saturday night I had the misfortune of being rear-ended on my way home from work.  I am okay, just a bit sore.  I am so very thankful that Anastasia was not with me otherwise I think it would be worse.

Like I said nothing else really going on except in a couple weeks I'll be on vacation...yay!!!