The reality is...

We need to put Ana on Child Health plus...like soon.  The expenses of the doctors for the many things that are wrong has piled up.  So as hard as the decision is to do it, we are pursuing it.  Its a scary reality, but we have to do it to care for our baby.  So for now all the big tests are postponed.  Once everything is settled we will reschedule.

Another reality I discovered tonight was that my baby being sick 3 years ago saved another little girl a week later.  I never looked at it from that perspective but in a way it was a blessing.

So as upset as I am about how rough its been I am glad some good came out of it.

Next week I meet with the director of special ed to get the nurse situation squared away.  It should go smoothly...but a little extra prayer won't  hurt.

So much for my little Superhero

So today we got more medical news for my little girl.  For those of you who don't know when we saw Dr. B for the first time she referred us to a GI for her bowel issues.  We went there last week and had to give stool samples to him for testing.  Well the results came back today and there apparently looks like there is inflammation in her colon and her pancreas is not absorbing as it should be.  

So that means......

she need an endoscopy/colonoscopy.  

Yet another strange test for such a little girl.  To say I'm overwhelmed at this point is an understatement.  I feel like there's just so much going on and I don't know which direction to go.  

It's just one more thing we have to deal with.  So now we have...

prematurity

type 1 diabetes

alopecia

possible hormone growth deficiency 

and who knows what else...

Not to mention the fact that I had our 504 plan meeting yesterday and I have more work to do to prep her for school.  

End of July Anastasia will have her 5 hour blood draw which will determine if she definatly has the growth hormone deficiency, about 18 days later she will have the endoscopy.

So if you pray please keep us in them, If you don't pray just send us positive thoughts....

Registering a T1D for school...aka battling a school district

So Anastasia is registered for school.  She'll be attending the same school I went to as a child.  After our first appointment with Dr. Brodsky she told me I had to contact the head of the Special Education department and request a meeting for our 504 plan.  I did so and got a secretary telling me that I had to contact the school.

I did that and was told "we won't do that until August."   My reaction was WTF?  I didn't know what to think.  The doctor is telling me one thing, which is the SAME THING all my literature from JDRF is telling me.  The school says something else.  I told Alex and in the same breath told him I wanted to go to a support group for parebts of diabetic children.

I am not one who asks for help outside of my family, but I felt I needed it.  I am so glad I did.  When we got to the meeting, at this point I had already informed Dr. B's office about what had transpired.  One of the parents basically told me she would work with me to create her 504 plan since the school district is dragging its heels.

Fast forward to the next week when I had direction on how to request the meeting once I had a letter stating Ana needs an aide with her when she is in school.  I talk to Dr. B's office and they inform me that she has already emailed the director of special ed requesting this meeting.

Now fast forward to today. Our second appointment in 6 weeks with Dr. B.  I ask her if she heard anything and she says no, so right then and there she sends another email.  She then states that if either of us doesn't hear anything a week after Ana's screening she is going over this man's head.
The advocacy that this doctor has for my child is AMAZING!!!!!!!!!  I cannot speak highly enough about her!  And we've only had 2 appointments!!!

So let's hope results come soon...and if not I'm thanking God this Dr. is in our corner.

Time to make some changes...

2 weeks ago we saw our new endocrinologist for the first time.  Afterwards I was very overwhelmed but I seem to be over it now.  She has many concerns, which is great because at Albany med it just seemed like we were in and out, and that was it.  Our new doctor spent time with us and let us know what we needed to do to help Anastasia.

One thing she suggested was to get a CGM (continuous glucose monitoring system).  So we looked into it and thankfully everything for this new device is covered 100%.

There is a concern that Ana is not growing, she's gaining weight but not getting taller.  She also will be seeing a GI for something with her loose stools.

Things are overwhelming but at least we are in the right direction.  For that I am grateful!!!

To My Baby Girl on her 5th Birthday

Dear Anastasia,

You are 5 years old now!  I can hardly believe it!  I don't even know where the time has gone.  You asked me yesterday why you had all the tubes and machines when you were born.  I told you it was because you were born early.  That prompted you to ask why you were born early.   Oh I hope I explained it ok.

You still love chicken, fries and white dip.  However you have started eating chicken strips from KFC, so since its your favorite we had that for dinner tonight.

We are getting along a little better than last year.  You are still a picky eater, which frustrates me but I am trying.  You have gotten my love of music and we spend many car rides singing along with either Moana or selections of Hamilton (clean songs only)

You keep growing and I wish you would stop, though I know that it's not possible.

You are the most wonderful thing I have been blessed with.  I hope you know that.  If you don't now, I pray you will understand that some day.

Love,

Mommy

Getting ready for September

It's been too long since I've blogged.  I've considered not doing it anymore but I don't want to be a quitter.  Also if this blog can help one person, even if it's just to make them feel they are not alone it will be worth it to put myself out there.

So last night I had to go to one of the schools in our district to register Anastasia for Kindergarden.   OMG its so hard to believe that in 13 days she will be 5!!!!!  So after registering the ladies who helped me told me I would have to call the school nurse to just let her know we registered.

So during my lunch I did just that.  Can I just say that I feel so much better about sending her to school.  She put me right at ease.

Another thing that is going on is that we are switching Endocrinologists from Albany to one that is in our area.  I had seen her at a JDRF summit we went to and one day she was shopping in my store.  I talked to her about Ana starting school in the fall and she asked what district.  When I told her, she let me know that she oversaw the endocrine needs of the district.  I was sold at that point.

Now that I've talked to 2 nurses in the district about her I am even more excited to be making the switch.

So much is going on!!!  I hope I can do this more often...though it looks like the app is not wanting to post for me, so to the blogger site I will go.

:)

Til next time!

When your kid is too smart for her own good.

So right now I've been struggling to figure out what to write.  I've been so inactive with this blog it's a wonder I haven't decided to stop altogether. 

Today we're in Albany for yet another follow up appointment.  This one was the one we dread, her yearly blood panel.  I dread it as her mom because she gets herself so upset, it's truly heartbreaking. 

Anastasia is also too smart for her own good too.  In the middle of the tech attempting to get her blood she cried out "why does it have to hurt so much?"  I swear I died a little inside when she said that. 

When they finally got what they needed the crocodile tears stopped and things were somewhat right with the world.  She won't let us hold that hand but she got 2 new stuffed critters and a princess doll. 

But honestly she is way too smart.  The things she was saying when they were taking blood from her I have never heard any other 4 year old say.  Then I remember she is not any 4 year old.  She is still the bravest 4 year old I know.  And I am so proud to be her mommy.