When your kid is too smart for her own good.

So right now I've been struggling to figure out what to write.  I've been so inactive with this blog it's a wonder I haven't decided to stop altogether. 

Today we're in Albany for yet another follow up appointment.  This one was the one we dread, her yearly blood panel.  I dread it as her mom because she gets herself so upset, it's truly heartbreaking. 

Anastasia is also too smart for her own good too.  In the middle of the tech attempting to get her blood she cried out "why does it have to hurt so much?"  I swear I died a little inside when she said that. 

When they finally got what they needed the crocodile tears stopped and things were somewhat right with the world.  She won't let us hold that hand but she got 2 new stuffed critters and a princess doll. 

But honestly she is way too smart.  The things she was saying when they were taking blood from her I have never heard any other 4 year old say.  Then I remember she is not any 4 year old.  She is still the bravest 4 year old I know.  And I am so proud to be her mommy.

Overcoming defeat!

I'm not sure how many of you know but I sing in a Sweet Adeline's chorus.  I've been a member since 2003.  Over the past 12 years I've competed at our regional competition and we've placed anywhere from 3rd-10th.  Last year we had our lowest scores ever.  We placed 10th and it was so disheartening for us as a group. 

Not sure what to do we reevaluated and went into this year's contest not really caring how we placed but we knew we had worked hard to improve.

We were thrilled that we improved 85 points and placed 1st in our division, and 7th overall.  We were so pleased we have been celebrating since the beginning of April!

Fast forward to this week.  Our chorus was invited to compete in the Harmony Classic next year.  This is a competing in which the top 5 small choruses in the entire organization and the top 5 mid size perform an entertainment package.  What an honor to be invited to go!

So I guess it's not time to get down from cloud 9 just yet...maybe next year.

To my daughter on her 4th Birthday.

Dear Anastasia,

  In less than 12 hours you will turn 4 years old.  Has it really been 4 years?  I wish someone would tell me where the time has gone.  We made it through a year of being diagnosed as a type 1 diabetic, and we celebrated making it that far by getting your first insulin pump.  It was literally like square one again but you are such a trooper and by far the bravest toddler I know.

  You still love chicken, fries & white dip.  However, you have been favoring my egg salad sandwiches as of late.  Your favorite shows are Paw Patrol & Mickey Mouse Clubhouse, but you still will watch Doc McStuffins with Mommy.

  You still have bad days when Grammy & Grampy watch you, however you do have more good days with them than you did last year.

  You can belt out songs you know without hesitation or fear.  You love hopping time at church and adore dancing there with your friend Joseph.

You are so loved Anastasia, even though we get frustrated that you aren't fully potty trained, and you repeat things 100 times we love you with all our hearts and then some.

I thank God every day that I was blessed to raise you as my daughter.  Happy 4th Birthday my wonderful, spunky, talkative, and bright baby girl.

Love,
Mommy

4 years of Marching for Babies

Many of you know that when Anastasia was born she was premature.  A month after I motivated myself to participate in the March of Dimes March for Babies.  I wasn't sure what I was getting myself into.  The first year the team I founded Anastasia's Avengers raised about $1000.  Each year following I learned something new about the walk.  This year was the first year I actually went to the Kickstarter
Breakfast.

It was good but emotional for me.  One of the speakers (the woman who is our regions mission family) mentioned that only NICU parents know what we have gone through.  There are so many ups and downs.  You go in one day knowing your baby is doing better.  She's gaining weight and then the next day she's having an apnea episode and you have no idea how to snap her out of it.

The last week we were there, a set of twins were born.  One was doing as to be expected.  The other was not as well.  We kept hearing talk of it having blood transfusions and then finally I heard they were going to Westchester Medical.  I never knew what happened since we were discharged days after.

Every year I walk to honor Anastasia.  Over the years I walk for other kids as well.  I walk to honor my friend's niece Gabi, who was also prematurely born.  I also walk to honor the memory of babies who didn't make it home to their earthly family.  I became acuainted with Diana Stone (author of the blog Diana Wrote) when she lost her twins Preston and Julian in 2012 at 20 weeks (just a month after Ana was born).  The following year she lost her full term baby boy Kaden.  I made a promise to never forget those boys as they have touched my life more than anyone will ever know.

Finally I walk to honor the memory of my former co-worker's son.  John was one of my supervisors when I worked at Borders in Poughkeepsie.  I was so thrilled when he told me his wife was pregnant, but then sadly at 20 weeks she went into labor and their son Alexander was lost.  I am honored that he allows me to walk to honor his son's memory.

I wish there was no such thing as premature birth so every year I walk I commit to raising money for this cause.  Contrary to the public belief the March of Dimes does not donate 1 dime for every dollar raised.  It's actually .75/dollar. 

For more of the history of the March of Dimes click here.  This will give you the whole origin of the name of the not for profit.

If you would like to donate to my walk click here

Mom and Daughter date

Right now we're in the middle of a huge thunderstorm, in February...in NY.  Bizarre weather this winter!  Heck yesterday it was snowing!!!

Anyway, I just got Anastasia back in bed.  She woke up as I was about to do her night blood check and had to go potty.  She was awake enough to tell me she was scared of the thunder but not the lighting.  Oh my brave girl.  I sometimes forget she's only three.

Today we had a good day.  We ran some errands and then I took her to McDonald's for lunch.  I love these days off during the week, especially when she is so well behaved for me.

Her hair is coming back, very very thin but more so than before.  I just pray it continues. 

Quick little update.

So with me finally taking care of myself I forgot to post an update about Anastasia's hair loss treatment.  We went back to the dermatologist last Thursday and there is a little hair growth!  So we now have been extending the time this particular cream is on her head.

Praying that this is the answer.  If there is more growth during the next 2 months we're good, if not we will have to head to Columbia Presbyterian for trial medicines.  I would really like to avoid that route. 

If you pray please pray that this is the right thing.  If not just give us a positive thought.

Knowing when enough is enough

Since mid December I haven't been feeling well.  In the beginning of January I went to the Dr and started getting better except for a lingering cough. So the end of January I went back to the dr.  Another course of antibiotics and some allergy meds (because we weren't sure whether it was sickness or allergy). 9 days into the new course of antibiotics I broke out in hives.  I of course stopped taking the antibiotic knowing that was the cause.

I have had 2 other allergic reactions to antibiotics.  In the past I've broken out in hives for about a week to 10 days then I'm fine.  Sadly it's not the case this time.  About day 4 of the reaction the joints in my fingers began to ache.  Then day 7 my thumb was in so much pain it hurt to lift or grip anything too long.  So on day 8 (today) I dragged myself to the dr.

It got me to start thinking, I do so much to make sure everyone else in my life is taken care of I rarely take care of myself.  I need to change this.  So today my hands are sore but I am trying to relax and ask for help when I need it. 

I'm on another antibiotic as well as prednisone for the allergic reaction so I know I'll recover.  But this was a lesson to me, that if I don't take care of myself I'm no good to anyone.

Always....

Celebrity deaths happen in threes.  Well this week I've counted at least 5.  David Bowie died Sunday, followed by David Margulies (the mayor from the Ghostbusters movies).  Today we found out about Celine Dion's husband, Brian Bedford (the voice of Robin Hood in Disney's animated film) and of course Alan Rickman. 

I am in shock and awe about Rickman the most.  Probably because I am most familiar with his work.  I mean honestly I've seen every Harry Potter movie at least 10 times. 

Being a book lover knowing what was going to happen in these movies before the movie was released I could feel kind of numb by all the things that were twists in the books.

However in Harry Potter and the Deathly Hallows Part 2 the last scenes you saw Alan Rickman made me cry every time.  He delivered such emotion the last time his character Snape spoke to Harry.  "You have your mother's eyes."

Then when you see that his character loved Harry's mother he just utters one word "always." It kills me every time.

Today I've gone crazy with posting every good thing I could find on Alan Rickman.  And it's nice to see the Potter community revealing what a wonderful person he was.  Daniel Radcliffe wrote a long Google+ post on how wonderful he was.  It's nice to see that those young actors got such support from a great man and continued to get that support after the movies were completed.

So sometime this weekend (after my chorus retreat) I will be pulling out my Dvds of all 8 Harry Potter films to rewatch  them and in a way mourn for this wonderful actor with the booming bass voice.

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.