A Thankful Heart

It's about 2 days before Thanksgiving, a day we are to give thanks for everything we have.  Reflecting over the past year I have a lot to be thankful for.  For one thing I am thankful that Anastasia is still here.  In June when she was not so healthy we could have lost her. I am also thankful for the support many many many people have given us since our diagnosis.  Whether its just someone asking how we are, to someone allowing me to vent.  Without that support system I probably would be insane by now.

I am also so thankful for my family who have taken on the challenge of caring for Anastasia when Alex & I have to work.  It is not easy anymore and I applaud them for helping us care for our girl.

Will the other shoe drop?

It's been about 5 months since our diagnosis and I keep waiting for the next bad thing to happen to our family.  A situation has presented itself to us and its not a good one.  I cannot go into details at this time but please if you are reading and following this blog pray or send us positive thoughts. 

Eventually I may be able to talk about this in detail but not on an open forum.  So please just pray...because the worst case scenario is not what we need at all.

And we are potty training!!!!!!!!!

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Ok so I don't have a picture of Anastasia on the potty for obvious reasons, but I figured I'd share one of the shorts we have seen on Disney Jr that has to deal with the potty.  

When Anastasia was diagnosed back in June, we hadn't been real serious about potty training her.  She would go on her potty occasionally, but we weren't strict about it.  We were told not to worry about it, especially since as a diabetic she drinks so much!

Imagine our surprise in late August when she asked us to go potty.  That turned out to be a one day thing, but now more and more she is asking or telling us that she has to go.  She has 1.5 rows of her potty chart filled, who knows how long this journey will take but at least it is one that makes me so proud.  

Follow up visit

A short post just to let all my followers know we had our second follow up visit at the endocrinologist today.  Anastasia is doing well and the best news is her diabetes is in control!  That makes me feel so good as a mom knowing that I am taking good care of her!

Not much else going on except my usual fall cold has made its appearance.  Joy of joys...luckily I don't have to work again until Saturday.

Balancing work and home

  (fyi this picture is from last year's set)

You might be surprised to hear this but I am a workaholic.  I have always been since I started working at Borders in 2003.  I was so excited to have a job in the "real world" that I took all the hours I could get.  When I felt I was qualified for promotions I applied for them.  I did whatever I could to move ahead.  Of course at the early point it was just me to worry about.  Yes I was in a relationship with Alex, but there were no combined bills, no child nothing just me and my bills.

As time went on I became obsessed with my job.  Not a day went by that I didn't talk about my job.  It got to the point where Alex had to make a rule that on my days off I could not talk about work.  Then the liquidation happened.  I had no job, we had to move out of our apartment because I didn't have my assistant manager's salary, and to top it off a couple weeks later I found out I was expecting.

That forced me to become obsessed with finding another job, after about 6 months of searching it was pretty apparent I wasn't going to find a position until the baby was born.  7 months after Anastasia was born I finally found a position at Hallmark.

It has been a struggle still to balance work and home, but I feel like I have done a better job of it than I used to.  It hit home that I still have issues with it right before Anastasia was diagnosed.  Alex had decided to take Anastasia to the ER (because she had labored breathing and was lithargic), and he called me at work to let me know.  If it hadn't been for my boss telling me to go punch out I don't know if I would have known what to do.  (so Lee if you're reading this THANK YOU).

This has been such a learning experience because now more than ever my daughter comes first.  I am still learning how to balance work and home and some days (especially now since it's our busy time and the most exciting time of our year) I do bring work home with me, but it's not as bad as 10 years ago.

Here's hoping I can improve even more with this... :)

A day in our life

Our life is a lot different than it was 3 months ago.  Our routine has changed quite a bit. I figured since I hadn't posted in a bit I would let you know our routine.

8:00 am-Wake up (sometimes Ana is up before hand), first blood test of the day, diaper change then her Lantus (long term insulin) injection.

8:30-9:00am breakfast, followed by carb counting and then figuring out her dose of Humalog (short term insulin).  After we figure out how many units of Humalog she needs .5-2.5 units depending on carbs and if she needs a correction from her first test.

9:00-12:00 playtime/or movies.  Sometimes we have a snack which is usually Cape Cod Potato Chips brand sea salt popcorn (4 carbs a snack cup).  She enjoys having her "juice" which is really water with flavor enhancers (0 carbs)

12:00-1:00 blood test #2 and then lunch.  After lunch we again count carbs and administer Humalog depending on carbs eaten and if she needs a correction.

1:00-3:00 prepare for a nap (which lasts 1-2 hours).

After nap until 6:00 more playtime and or movies (usually Disney Jr.)  Again we may have an occasional snack and juice cup.

6:00 is 3rd blood check and dinner, same routine as lunch and breakfast.

7:30-8:30 get ready for bed, after 9:00 bedtime blood check.  if it's over 300 we have to give insulin, but then she is down for the night.  She loves having a nighttime cup which is unsweetened almond milk (0 carbs :) )

2am-blood check, no adjustments given.  Usually a diaper change if wet and another cup of unsweetened almond milk.

2am kills me, usually I'm in bed by 11p-12a so 2am comes really quick for me, then it's hard for me to go back to sleep.

But that's our day in a nutshell.  We are more structured than we were 3 months ago, but I guess it's what we need to do.

Go with Your Mommy (or Daddy) Gut

It's been almost been 2 months since Anastasia was diagnosed as having Type 1 Diabetes.  I'd like to say that it's getting easier...but there are days when I just feel so frustrated.  Today at work I was reminded about how we finally got diagnosed.  One of my co-workers was telling me about her cousin who had an ear infection.  Just like that everything came back to me.

June 6, 2013 Anastasia didn't seem like herself.  She was sleepy and very lethargic.  I thought it was a cold and went to my closing shift.  2 hours later I got a call from Alex saying he was going to bring her to the ER. We left there hours later with the diagnosis of an ear infection.  We had some antibiotics and she seemed to be a little better the next day.  

However on Tuesday June, 10 I still felt she wasn't right so we went to the pediatrician practice.  We found out she had a double ear infection.  We got more antibiotics...things still were not back to normal.

Then came June 13th....Friday the 13th, 2 days before Father's Day.  I went back to the pediatrians and spoke to her primary doctor who felt that we needed to go back to the ER and get bloodwork done.

Back we went and finally after being there for several hours we had our diagnosis.  As much as I hate that Anastasia is diabetic I am grateful we have answers as to why she was so sick.  

She was suffering so bad she went into kytoacedosis, which if left untreated results in death. So my message to all you parents out there is to trust your instincts.  If you feel your child is sick and is not getting any better keep bothering doctors until you have an answer. 

It was Bound to Happen Sooner or Later...

Honestly I was hoping this would happen later.  I've been quiet for a couple weeks because I've just been struggling with this whole thing.  My positive attitude has been squashed by a negative almost depression like state.  I think I just got very overwhelmed.  The bills have pretty much stopped coming in and we owe various medical institutes and personnel over 5,000.  I don't know where it is coming from to be honest...I know I can pay in installments, but frankly the income that I have I will be paying that off for years and years.
Today I was so relieved that the mail I got from Albany Medical Center was just a survey....the beginning part I can't even fill out because it's about the beginning part of her stay there and I wasn't there for that.  We still are having changes to our insulin injections and carb ratios.  Last weekend was rough because she just kept running low, they changed her long term insulin dose and her carb ratio and then she ran a little high, nothing drastic, but higher than it should be.

Now for a couple meals we have one ratio and for others it's different.  I'm hoping this weekend we won't fluctuate too much.  One weekend of not having to worry whether she is too high or too low is all I ask for at this point.

I do have to say I am very grateful for my Evergreen Chorus family.  I came to rehearsal very upset about how things were going and many of them just gave me hugs and resources where I can go for help in dealing with my sick child.

I hope this weekend I feel better...I am looking forward to my time off in a few weeks, even though I won't be making any money.


On another note, I'd like to use my blog to wish my inspiration for blogging Diana a Happy Birthday!  If it wasn't for her and her honesty I don't think I would have the courage to blog about my experience with Type 1 Diabetes and how it affects my family and I.

I'm no longer her favorite

I think one of the hardest things for me to wrap my head around is that since Ana's diagnosis and hospitalization I am no longer her favorite parent, it's been a long time coming.  When she was born I was unemployed and remained that way until she  was 7 months old.  It hurts though, it really does.  Alex and I made the decisions we did because we felt it was the best.  I am only part time so I don't qualify for paid sick time where Alex has it.  So we decided that I would work the weekend while he stayed in the hospital with her.

When we got home the acting out started to get worse.  "Do you want Mommy?" "No" screaming  follows.  Recently it has really gotten to me at bed time.  Since we got home Anastasia has refused to go to sleep for me.  Her new routine is to read a book watch us play a game on our tablet or Alex's PSP and then she falls asleep.  Well that's how it is when Alex puts her to bed.  When I try it's a fight the whole time.  Last week she fought me so hard she slammed her head into my cheek.  It's still sore.  

I am at a loss.  I love her so much it hurts me to see her acting out at me.  When it's time to change her diaper I get kicked, repeatedly.  I try to discipline her but it rarely works.  If she doesn't stop by the time I finish changing her she goes in time out for 10 minutes.  

I guess it's just time for some tough love.  It's hard, she's only 2 & now she has an auto immune disease but a mom has to do what she must do.  

Thanks for reading this vent.  It's what has been on my mind lately.

Welcome

Hello and welcome to my blog.  The idea for The Journey I'm On has been brewing in my mind for about a month now.  I have wanted to blog about something I can focus on and could never seem to find the right topic, then Friday June 13th happened and my whole world changed.  

It was on that day that my daughter,  the most important thing in my life was diagnosed with Type 1 Diabetes.  Did I mention my daughter is 2?  Talk about a life changer!  So now I have something to blog about.  

What I hope to accomplish through this blog is to create an outlet for myself, where I can share my feelings, frustrations, and advice to anyone willing to read.  I really hope in the long run that this blog will also help people in a similar situation as my family.  

I hope that you will be able to share my journey with me, and if you feel that someone you know will benefit from it, feel free to share it with them.