Triggers

  I used to think I was immune to be triggered by anything, but that is no longer the case.  Certain events in my life have caused things to trigger me.  I can't watch the episodes of Beverly Hills 90210 when Andrea gives birth to her daughter Hannah because I've been through premature birth.  There's a certain Signed Sealed Delivered movie on Hallmark I can't watch because it deals with HELLP syndrome and the gravity it could cause.

  But this week I was triggered by something Ana is going through at school and it has sent me back over 20 years.  All school year Ana has dealt with 2 girls in her class who were her very good friends being mean to her.  Until yesterday I hesitated to call it bullying but frankly it is. 

  During gym yesterday Ana let me know that one of the girls said she was a loser.  I assured her she wasn't.  Looking at her face and seeing little tears roll down her cheeks has broken my heart and as a parent it is very hard for me to see her go through this so young.

  After she went to bed I emailed her teacher and explained while it could have been a case of she said she said I didn't believe it would be so.  I really don't believe Ana would make up someone calling her a loser, because quite frankly we don't talk like that at home. 

  When I went to bed my mind started racing and I thought of all the times I had been bullied.  I've been pushed down stairs into a group of people, I've had someone kick my butt really hard while I was at my locker.  There were times I had to avoid bringing my flute to classes because one girl in particular (even though she was also in band) would find it funny to take my flute out of my desk.  The kicker was Senior year in high school when I had to have a friend drive me home because all the freshman on my bus route got their kicks out of making fun of me because I didn't drive, and because I didn't have a boyfriend.  It was never the ride to school, always home.

  Yes I got through it without anyone interceding on my behalf, but it has affected me. It probably sucks even more because I tend to remember many things.  I can tell you names of almost everyone involved in these instances, with the exception of the kid who kicked me in the butt because I don't remember even really knowing him!

  So today I am a worry wart, hoping I did the right thing by telling the teacher, and not making things worse for Ana.  I can't get her sad face out of my head wondering what she did wrong to make 2 girls who loved to play with her last year to turn against her. 

  I know she is better off without them, but try explaining that to a 7 year old who just doesn't understand what she did to deserve this......

To Anastasia on her 7th Birthday

Dear Anastasia,

    It's been another year, slightly less eventful than the last.  You are in first grade now and are learning so much.  For the most part you are well behaved in the classroom, but you do have your bad days.  You started growth hormones last April and have shot up at least 4 inches!  Mommy is still fighting to get you the medication you need to treat your colitis, it's not been easy but she won't give up until you are feeling better.  

  Our dog Harmi went to Heaven to keep Mr. Robert company but Grammy adopted a puppy she named Sparkle.  She gives us all a run for our money, especially when you leave your stuffed animals on the floor for her to grab.

  I am not sure who your best friend is right now, because the girls in school seem to be mean to you off and on.  I hope that stops soon.  I hate for you to feel like girls who were your friends don't like you anymore.

  You still love your chicken, fries and white dip, but you are becoming more adventurous in what you eat!  You love Daddy's pork chops and have even enjoyed steak!!

You have such a personality and you give all of us a run for our money as well (right there with Sparkle).  We love you and I love watching you grow into the smart, funny little girl you are.

So on your 7th Birthday I wish you another year of love and (hopefully) health!

I love you my baby girl,

Mommy

Diabetics at birthday parties

(disclaimer) I am writing this post in the hopes to get awareness out, this is not intended to piss anyone off, nor upset anyone.  It is my opinion and unfortunately I have to live through daily.  

Anastasia has been invited to exactly 1 of her classmates birthday parties since starting Kindergarten last school year.  (This does NOT include the family friends parties that we have been to since her diagnosis because they are not in her school).

That's right 1, the invite for that one came 4 days before the party, via text during my chorus rehearsal.  Alex and I both had to work so I had to decline.  It got me thinking, wow, either Ana's classmates aren't having parties (which honestly I wouldn't know because they are not allowed to give out invites in class), or the parents just are unsure what to do because one of the classmates is diabetic.

I personally have not had an official birthday party for Ana since she turned 1 (I had an unofficial one when she turned 3 and that was pretty much an informal play date that I brought a ton of snacks and cupcakes to).  We generally cannot afford one so for us her birthday is when we just spend time with her and do (and eat things) what she wants.

So to those people who are wondering what it would be like inviting a diabetic to a birthday party, this is how it goes.

(I will use the example of the last party we went to for our friend's daughter at Chuck E Cheese)

We get to the party-we don't leave her there to figure out things on her own.(even if it was a place where we could I still would make sure someone who knew how to take care of her would stay).

We gathered and got our little token card and went on our way playing games.  When it was time to eat pizza we (or she) tests her and figures out if she needs a correction or can just eat.  When she's done eating she gets her insulin for her food.  She goes and plays some more.  It's cake time...another finger prick, another correction and she eats some more (or doesn't in this case).

She plays until its time to go home.

I would NEVER expect another parent to have to take care of my child's illness especially when it is so overwhelming.  I would always ensure that myself, Alex, or even Aunt Jenn could be there to care for her.  All I ask in return is that if something is packaged, save the nutritional info so I can make an informed decision on how much insulin I need to cover what she ate.

I truly hope that the kids in her class haven't had parties but in the back of my mind I am always thinking well she's probably not being invited because of the fear of diabetes.  

What's Next?

My sister and I love watching reruns of The West Wing.  One of the catch phrases in that show is "What's Next?"  It's something that President Bartlett says when he wants to move on to what ever is next on his plate.  I used it a lot when I did the "sort" of Borders store 595 in Poughkeepsie.  I think that's why the trainers there liked me so much because I completed tasks quickly and wanted to move on to the next thing.

Well I've been using it frequently for Anastasia and every single condition she has.  When we were in the hospital waiting for her colitis diagnosis I heard it and then asked what was next.  The alopecia came back, what's next?  She's constipated, what's next?  Issues with getting her diabetic supplies, what's next?

Now we face another issue, because she has been so constipated lately her colon has stretched a bit.  This has made her not feel when she has to poop.  So now during school she has been pooping herself and it has been affecting her socially.

Nobody wants to hear that their child's "friends" from last year don't want to play with them.  It hurts me even more because at times I was that child (with the exception of my life long friend Beth, so Beth if you are reading this it's not you at all!!!).

So I called her GI for some guidance and now we get to clean out her colon...YAY (NOT).

So this weekend when I am not working I will be encouraging Ana to drink a ton of miralax and eating x-lax squares so we will hopefully get some sense of normalcy for her.

Pray that this work because even though I will be ready for What's Next...I might not look forward to it.

Frustration sets in

I haven't blogged about life in a very long time.  What I have done is a couple of live feeds on Facebook, which is fun and all but I feel like I've neglected this blog here and I really don't want to.

I exploded the other night.  You see the meds Ana takes for her colitis cause her to get backed up.  Friday she was so backed up she kept peeing everywhere.  (Because apparently the intestines push up against the bladder causing random peeing). After she peed all over the bathroom I went to her night underwear for her.

As soon as I got into the car I just started screaming.  "I am done.  I have had it with all the medical issues.  Why the heck can't my kid catch a break??"

And yes before anyone says it I know all her issues are not as bad as cancer.  But it does get overwhelming.  I try hard to  be positive and most days I do a real good job.  However if you saw what I see on my Facebook feed you would know that a little girl who is diabetic was at a sleepover last week and her blood sugar dropped so low that she ended up hospitalized and after a couple days was declared brain dead.

Her organs were donated so some good came out of it, but that is the reality of diabetes and it scares the heck out of me.

So as for Ana she finally pooped yesterday, we started a new probiotic with fiber last night and let's hope it doesn't come to what we had Friday for a while.

To Anastasia on her 6th Birthday.

Oh your 5th year of life is almost over, I can hardly believe it.  You started school this past year, you are quite the little charmer.  Everyone at your school loves you to pieces.  The woman at the attendance desk calls you the mayor of the school, I'm not sure if this is good or bad.  You have 4 (maybe 5) boyfriends.  You best friend is a little boy named Roman, and he is a sweetheart. 

This past year has not been short of challenges.  At the end of February we finally got things settled so you could have testing for possible growth hormone deficiency.   Thankfully your new endocrinologist noticed you looked a bit pale and ran an extra blood test.  You were found to be anemic, which meant we had to go to the hospital with you.  We ended up at Maria Fareri Children's hospital. 

You had a blood transfusion and then had a colonoscopy  (because you had a GI bleed)  They found you had colitis, ever since you had treatment you are a new little girl.  So much energy we can hardly keep up with you.

As always you still like chicken, fries and white dip, but now you like it from Buffalo wild wings. 

We have our good days and our bad days. I'd like to think there are more good days than bad ones.

I love you dearly and I truly hope that year 6 is one of peace and not as much chaos!

I love you always my baby girl,

Mommy

Moving Forward in our Journey

Part of this is an explanation that I sent to my chorus family yesterday, I figured it was easier starting with that.

Friday morning Ana had her growth hormone stimulation testing.  This is something that her endocrinologist has wanted us to do since retreat in June.  At our last appointment she noticed Ana looked a little pale so she also ordered a CBC.  

Around 5:15 Friday night the office called with the results of the cbc and said she was anemic.  After she consulted with her perdiatrician we were encouraged to go to Vassar or Westchester medical center.

Thinking the closer choice was better we went to Vassar.  We spent quite a few hours in the ER before we were told she was being transferred to Westchester. As it looks like the anemia is caused by a GI bleed.

Around 4:00am Saturday Ana and I rode in the ambulance to Maria Ferrari, and we stayed in their triage area until about 1pm.

During that time she had a blood transfusion and she has definately perked up.

Now we have to look at the reason for the anemia and find out whats causing the GI bleed.  This of course means we need a colonoscopy. This will hopefully be done Monday (2/26).  

Today was an adventure, because Ana needed some specific testing on her stool as well as testing for c-diff we were quarantined to our room.  Unfortunately we found out after Alex left to work.  So we had a video chat with Aunt Jenn during our church service, and then our friend Ange and her daughtwr Alora video chatted with us.  We had a visit from Ana's TA which was great.  During our time though we had to have Ana drink 8 packets of miralax.  Thankfully between Mrs. G, myself and my sister she drank it all 

Around 8:45 tonight Ana's quarantine was lifted and we were free to see the fire truck that's here.

So the next step is that Ana has to poop clear, which I think she will do.  Then she will hopefully have the colonoscopy.  

They plan on starting her on IV fluids in about 20 minutes and then from there who knows.

Thank you all for your thoughts and prayers, I so feel them!!!