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!!!

  

Moving Forward With What We Need to Do

It's been a few months since I've posted. Since the last post we fought with insurance companies on getting Child Health Plus for Anastasia.  Basically NYS of health was telling us that she couldn't apply again until she was taken off of our insurance and Anthem BC/BS was telling us we couldn't take her off our insurance without having other insurance.  That was the beginning if November.

So what did we do?  Well first it was open enrollment for Alex's job so we did not put her on for this year.  Then I contacted the social worker at Anastasia's school and she helped me go through the process of reapplying for child health plus and as of January 1 she has the insurance we need.

There's been a couple glitches we are working through.  The dentist she was going to will no longer take the new insurance as of April 1st.  Also the test strips we use weren't covered and we had to get a prior authorization form submitted so they would be covered.  I had to reach out to dexcom to find out where we get our transmitters and sensors from now.

I had no idea where to go for our pump supplies so when we went to see Dr. B. her staff investigated and we got that info.

And the reason for us changing the insurance, that's happening soon. February 23 is when her stim testing for the growth hormone deficiency.  I'm just takingit one procedure at a time.

The Scariest thing you do as a Parent....

When you first send your child to school it's pretty scary.  It's really really scary when your child is considered special needs whether it's because of a learning disability or a medical issue.  But I am happy to tell you that if you have the right team advocating for your child it is okay to be scared, and that things will be okay.

Today we had our first appointment with Dr. B. since Ana started school.  Before we even got into the exam room Dr. B was telling us how she has done so much training with many of the staff at her school.  She said the principal was behind it 100%, encouraging staff and teachers to go and get trained.  She herself even did what she was asking her team to do.  To say I am overwhelmed with gratefulness is an understatement. 

I knew a few weeks ago that Ana's teacher went for training, but I had NO idea how many people were involved.  Dr. B also told us how loved Ana is at school and that we are very respected as parents for being open with communication and always being on hand to field any questions.  I have no words for this at all.  I was pretty freaked out sending her to school, but everything worked out.

As for her A1C (which is tested every 3 months), well we are at a 6.5 which is FABULOUS!!!  But now it's not just myself, Alex, Aunt Jenn, Grammy and Grampy who can share in celebrating us being at a great number, but the nurse and TA at school as well.  So I made sure that I thanked them, because without that team, I don't think it would be that great.