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.

School days

So far Anastasia loves school!  She hasn't told us a lot of what she has done, but when she tells me something you can tell how proud she is of it.

The past 3 days have been full of phone calls from the nurse, I usually get a call when she gets in, before lunch, after lunch, around her special (art, music or gym), and then before she goes home.  The first 2 days I got calls around recess because her blood sugar was dropping.

Today I haven't gotten a single call.....I hope this means they have gotten the hang of what to do.  I'll see around 10:50 when it's lunch time.

The first 2 days she did miss some class time because of her fluctuating numbers.  Yesterday she missed a little bit of gym, but not because of her numbers.  You see Anastasia is a very smart little girl, and she noticed that when she went to the nurse to get her insulin for her meal, she knew mommy provided the nurse with goldfish for her low blood sugars (before gym only).  So she thought if she told the nurse (and her TA) she was hungry she would get the fish.....

That stemmed a conversation for the 2 of us that the Nurses office was NOT to be used for an extra snack time.  It also caused her to request a slightly bigger lunch and snack for today.  Hopefully that works.

Other than that there is nothing new.  I have back to school night on Thursday so we will see what that includes for us.  I am just so glad that Anastasia has adjusted quite well to getting up early to get ready for her bus.  I haven't yet (because I am NOT a morning person at all), but hey I love seeing her get on with a smile every morning!

Breathe...

As the school year begins I have to keep reminding myself to do just that. I am worried, probably more than I have to be but worried none the less.  

I love Anastasia's teacher already.  She seems really nice and has really tried to get to kmow each of her students.  Thursday we had the welcome picnic and she said hello to each family.  She even raced Anastasia to get a slice of pizza (Ana won).  

I just pray that the TA knows what she is doing.  That my daughter won't lose alot of class time due to insulin adminstration, and that she can enjoy school as I once did.