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!!!

Co-sleeping no more

So on and off the first 2 years of her life Ana co-slept with us.  After her diagnosis it ended up pretty much staying that way.  In my opinion it was just easier because we had 3 other people in our home to worry about keeping awake with having our toddler cry it out.

Over the past few months we have been casually mentioning how nice it would be for Ana to have her own space, aka her own bed.  She even picked out which bed she would want if we got her one.  Well Friday we finally bought it for her. 

The first night was hard.  She was so excited at first but then she started whining that she wanted to sleep with Alex and I.  That broke my heart.  Finally she fell asleep and only woke twice during the night.  1 was for her usual cup and 2 was to go potty.

Last night she woke up once and was just whining in her sleep, which she has already done once tonight as well.  However she has stayed in her bed!  I am so proud of her! 

I am also praying that this will be permanent, because I am liking not having  my 3 year old try to push me out of bed!

She has grown up so fast!  We are so glad though that she likes sleeping in her bed, and grateful it wasn't a hard transition.

Phew!

Random Acts of Kindness go a long way

Before I start I just wanted to thank everyone who has read my blog over the past year.  I can't believe I've been blogging about my journey for a year now!!!  I promise I will try to be better about blogging.  Though 30 posts in 1 year is better than I have done in the past.  I think this year I will go for at least 52 posts.  I think I can do that!

If you have ever been blessed to have a random act of kindness bestowed on you, you know what a gift it can be.  I have been blessed to have been a part of some RAOK and also have tried to pay it forward as well.  A few months ago Alex and I were getting Dunkin Donuts at the drive through.  We placed our order and when we got to the window to pay we were told, "the car in front of you paid for your order already."  Well we had our money out already so Alex without missing a beat handed the barista his money and said, "Then this can go toward the car behind us."  It felt good to pay it forward.

Today however we were blessed by someone, and I cannot even put into words how it made me feel.  We were eating our lunch with Anastasia, we went through our usual routine, prick her finger get her blood sugar level, see if she needed insulin, then let her eat.  We are so used to it we left her kit on the table.  A couple of times I caught the eye of the woman at the table behind us.  She wasn't annoyed looking, but she did look curious. As we were getting our garbage together the woman approached me and handed me money and said "Your lunch is on me, I am praying for your little girl."  I was floored.  she then asked for Anastasia's name so she could lift her up in prayer and left.  Alex and I looked at each other in awe.

I of course started crying because she was so nice, then I realized she was watching us as we cared for our diabetic daughter.  We are so immune about it after a year (though I'd really like for numbers to stabilize with the pump) we never realized that someone outside of us would realize what we are doing.

So to the angel who blessed us today I thank you from the bottom of my heart, you truly do not know how you touched me today.

One Year Ago

If you asked me over a year ago if my daughter had diabetes I would have told you "no she's just growing and likes her milk."  A year ago tomorrow we were dicharged from Albany.  In many ways working with the pump I feel we are back to that day. 

We check her blood at least 13 times a day and pray that we have a good day...or 2.  We have a couple of good checks but nothing spectacular.  I do love that Anastasia has more confidence.  Today we were in Target and when we checked out the cashier asked how she was and Anastasia immediately pulled up her shirt to show off her pump pouch.  The cashier didn't understand but of course why would she. 

I've cried alot in private this week.  Reading my posts on Facebook from last year and seeing the fear and total loss of direction.  I'm still lost at times.  Anastasia's hair was growing back but it seems to have receded again.  Very upsetting for me. 

It's been a tough year.  I'm hoping the next one is better.  I pray it is, because my baby girl deserves it.

A life revolving around Diabetes.

I am so tired...

Really tired.  I should be sleeping, I don't have to check Ana's blood for another 3 hours.  Yet here I lay awake.  I feel like it's a year ago and we are back to square 1.

I know we're not but it's hard not to feel that way when we are testing blood at least 12 times a day, sometimes more.

To make things worse Anastasia has a really painful rash that isn't getting any better....underlying cause...probably the diabetes.  Thankfully we can get a strong cream and it will clear it up.  But that means taking her to the doctor (which I hope I can do tomorrow).

Thursday and Friday I had some really bad dizzy spells.  I would lay down and after a few seconds the room would spin.  They seem to have gone away but it still was scary.

It may have been a little reminder to take care of myself.  But for now I can hopefully get some sleep...

Over 72 hours have passed...

(Photo is courtesy of my friend Ange)

So it's been a crazy, happy, stressful, chaotic 72 hours.  On Friday morning I got a call from the head nurse from the Glucose Management Team of Animas.  It was a 45 minute call, basically giving me an introduction to the program Anastasia is now in and how her blood sugar will be monitored.  I have homework for the next few days from our workbook, and honestly I feel like we have just rewound back to last June.  We are starting all over again just with another piece of technology.

Blood sugar is checked upon waking in the morning, 2 hours after every meal, bedtime, midnight and 2 am.  If we change her site we have to add another check 2 hours the site is changed.  If she has high blood sugar (which she has had) we have to check 2 hours after the high blood sugar to ensure it's going down.

We suspect her carb ratios are not right resulting in the high blood sugars, again like in June its just trying to figure out the right formula for our girl.

Friday afternoon I had to change her site since she had a messy poop and it went all over her site.  I diverted from the procedure we were given which resulted in a very stressed out mommy and little girl.  Saturday we got to go to Anastasia's friend's birthday party.  The difference in her behavior from the party last year and this year was outstanding to me.  I have not seen Anastasia so happy in a long time.  She had so much fun playing with her friends and showing off her pump.  

She is so proud of it.  She loves it when I administer her insulin from the remote.  When she knows I have done it she smiles and looks at her pump and says "I got my insulin!"  

We are so happy she is taking to the pump so well.  We ordered a pouch for her so hopefully soon that will come and make dressing her a bit easier (for now no dresses :(  ).  

And we are live....

This is a blurry picture, but you can see the joy on Anastasia's face.  She is showing off her insulin pump which went on here at 6:45 pm today.  She is so happy and cannot stop talking about wearing it.  There was a challenge getting her site in, she knew we were putting it in her butt, and she hates getting her lantus in there but once we were done she was okay.  I am so proud of her.  She truly is so brave and my little hero.

So now we have to call our glucose management team representative tomorrow with numbers (oh joy this again hahaha).  We also have to wake up several times a night to do checks (more than just the 2 am).  It is worth it though.  To see the smile on Anastasia's face about not getting anymore needles except a site change every 2 days (which of course we will do when she is sleeping).

I am so grateful that now we are on a new journey, a pumping journey.

The app I love and hate at the same time...

I love and hate the app Time hop at the same time.  I love it because it shows all your past fb & instagram posts for the day in years past (as well as tweets).  I hate it for pretty much the same reason. 

I enjoy seeing posts and comments about my accomplishments  (when I got my job at Hallmark, the first sonogram pics of Anastasia, feeling good about my job etc).  But now we are getting close to it being a year after our diagnosis and what I am seeing is actually making me question myself as a mom.

I know I shouldn't dwell but that is just who I am and what I do.  In today's feed there was a picture of Anastasia watching cartoons on our tablet.  She had been sick the day before and I just stared at the picture wondering why didn't I see that she still looked sick?  Why did I think she was better?

Looking back I know I should have listened to my mom when she suspected  Anastasia was diabetic.  I should have taken her to a doctor sooner.  But I can't change the past. I can learn from it though,  and as I struggle through the next few weeks I pray to have the courage to stay strong during our transition from syringes to the pump.

This is the hand we were given and we will make the best of it no matter what.

7 days

Next Thursday is our scheduled insulin pump start.  Training went okay last week.  I am confident in administering insulin from the pump, now all I have to do it feel comfortable with loading the insulin into the pump and putting the needle which Anastasia's site in.

Everytime we practice with the meter and pump Anastasia says "look it's my pump!  no more needles!"  I pray this is true.  I pray with every fiber of my being that this works out because if it doesn't it will be like we wasted a ton of money on this device.

So if you can say a prayer or send us a positive thought.  We truly do appreciate it.

Many apologies for not posting alot recently, May has been a whirlwind between my competition, MOD walk, Mother's Day, and this training.   Not to mention allergies, and a lingering cough which is very tiresome.

Hopefully I will get in a better habit of posting our journey....and soon.

Stressing

So in less than a half hour our pump trainer will be here to start us on our journey with our insulin pump.  To say I am scared and nervous is an understatement.  I pray we are doing the right thing and that we have everything. 

It's been a busy time for us.  On May 2 I had my regional chorus competition.   Then the 3rd I had the March of Dimes walk.  After that it was the craziness of working the week before Mother's Day...and finally our card revision at work (which was much easier this year than 2 years ago).

During all this I have gotten a cold or been affected by allergies or both.  So all this Chaos and not feeling 100% has been just ducky.

So if you could say a prayer for our training session because it's very overwhelming for me.

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.

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....

Every town, has it's ups and downs...

...sometimes the ups, outnumber the downs......but not in Nottingham....

I love the Disney version of Robin Hood.   It is by far my favorite Disney film.  This song hit home this past week, as I dealt with yet another medical situation with Anastasia.  However this week has been such a roller coaster with ups and downs.  Tuesday was my lowest point.  We had just gotten our bad news and then I had to go chorus and focus at rehearsal because we had coaching.  

I cannot express how very hard it was for me to focus with this bad news dwelling on my mind.  Then Wednesday I had to work a long shift.  When I saw my phone and all the support I had gotten from my friends it brightened me (and in true fashion some of the support made me cry).  I cannot tell you how grateful I was for even the smallest prayer.  Wednesday night I found out a friend of mine was expecting, so happy for that good news!  The rest of the week was actually pretty dull after that, days off and work.  I got to spend some quality time with Anastasia today and Thursday which was nice.  

I am slowly introducing Anastasia to Nick Jr shows, as I am pretty sure I have seen almost every episode of Mickey Mouse Clubhouse, Sofia the First, & Doc McStuffins.  She has taken a liking to the Wonder Pets, and Blues Clues...probably because the songs are easy and repetitive.  

I also gained a member to my March of Dimes team, Amanda I cannot tell you how excited I am for you to join us this year!!!!!!

I am blessed by my friends and family, and if I continue to remember this the ups will outnumber the downs....

And now for something else different..

So the past month we have noticed that Anastasia's hair has been thinning a lot.  Almost to the point where she has bald spots.  We finally went to the doctor today and it is possible that my 2 year old may have alopecia.  Great...guess what could have caused it...yup T1 diabetes.  Even better we don't even have an answer if her hair will grow back. 

I miss fixing her hair.  I hate how this disease keeps changing our life. 

I am sorry for the vent but I just am so upset about it. 

When it hits close to home..

This blog post is written today with a heavy heart.  I have had a lot of craziness the past few days but I felt it was important to get this message in particular to my Facebook and blog followers.

You often hear about pet shops, of dog brokers who sell animals who are ill, sometimes they recover other times they don't.  A while back I remember a former boss of mine getting a dog for their family.  After a bit of time I asked how the dog was and they told me it had passed away.  That story has been on mind as of recent especially now.

A long time friend of mine (Girl Scout sister to be precise) received a Mini English Bull Dog who she named Bruno.  The following is paraphrased from her Facebook Wall.

Bruno was born November 9, 2014 in Missouri, my friend became his human mommy on January 11, 2015.  He had a respiratory emergency on January 17th, just shy of being 10 weeks old.  On January 24th he was admitted to the hospital.  On January 28th he was transported to an Animal Emergency center as he was in respiratory crisis.  He was required to stay in an oxygen tank 24/7.

Bruno passed away yesterday February 18th, 2015.  My friend knows for a fact that this didn't have to happen.  During his stay at the emergency center there were many tests done on him.  The one infection that ultimately led to his passing was Comamonas Testosteroni, which is not common in the  United States!!!!

So either of the following scenarios caused this-

1)  Bruno was either transported from Missouri to New York with cargo that included exotic animals from overseas that were not quarantined for the required amount of time.

2)  The broken in Westchester (where he was purchased) houses/sells exotic animals and did not quarantine them for the required amount of time.

Either way someone is at fault and it is not fair that my friend has to suffer the loss of her fur baby!

But she is a woman of action, which is what I love most about her.  She is raising money in memory of Bruno three ways.  This I am copying and pasting from her page, because it is just easier for me.  Please keep my friend and her family in your thoughts and prayers as I am sure this is not an easy time for them at all.  Bruno had many people praying for him.  I only wish the outcome was better.

The following is from my friend's Facebook page and is how she is going to make some good out of this tragedy---

1.) The 1st Fundraiser is via One Hope and will not only benefit our Charity of Choice ( Take Me Home Pet Rescue ), but with every purchase you are able to pick the charity of YOUR choice to receive a donation as well.

All you have to do is click on this link and place an order:http://www.viaonehope.com/sites/neta-lamas

2.) The 2nd way to help is by placing an online Party Lite order, which will benefit "Bruno's Buddies." I was very blessed throughout this process to have people help me cover the over $20,000 in veterinary bills and hospital costs. Had I not had somebody step up to help me try and help Bruno... he would have been gone weeks ago. I want to be able to pay this forward, by establishing a fund for somebody in need of an emergent procedure, exam, or medicine for their dog.

So how do you help?
Go to: http://www.partylite.biz/sites/nlamas
look for the box that says "Placing an Order for a Party"
Click that. Enter: Bruno Cortijo, as your host
Shop away.

100% of the profits of this event will go to Bruno's Buddies!

3.) The last way you can help is by helping us CELEBRATE each adoption / rescue at Take Me Home Pet Rescue! We are collecting NEW Blankets, Toys, Food, Clothes, Bowls, Towels, Buckets, Baskets, Treats, Leashes, Harness, etc. We want to make sure that each puppy has an easy transition to their forever home and the rescue has supplies that they need to continue to do the AMAZING work that they do (which is ALL completely based on DONATIONS)! 

Author's note-If you are interested in the third option please contact me either through my blog or my Facebook and I will make arrangements with my friend to get this done.

To Pump or Not to Pump

This is a decision that has been weighing heavily on our minds since Anastasia's diagnosis back in June.  At that point we were like ok it will make everything easier, no needles just moving an injection site every couple of days.  Done deal!

Then I was told the cost, and I just about choked....for 3 months worth of supplies and the pump it was just about $2,900!  For those of you who know me and my husband you know we do not have that money just laying around.  So we decided no.

Now Anastasia's numbers are fluctuating  a little too much and her endocrinologist feels it is time to put her on a pump.  I honestly feel that way too.  She has her good days and bad days when it's time to get her insulin.  The bad days make me feel horrible, but then I remember she is still 2 and she doesn't really understand what is going on yet.  

So now we save money, and pray that insurance will cover a little more than what they were going to cover 6 months ago and see what happens.  If she takes to it great, if not we can always try again...