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.  

Starting School anxiety...for me not her..

Everyone always teases that parents of Kindergartners are overly worried about the start of school.  For me its like 20 times worse.  So many things are going through my head and then once a thought is calmed down another thing happens.

Take today for example.  The bus routes were released today.  At our 504 meeting Ana's principal thought she would do better on a van so I agreed.  So all summer I've been going ok she's on a van. I showed Ana little vans driving around so she knew what she'd be riding.  Well today the bus routes had no vans listed.  So I freak out and text the woman who has been our advocate.  She told me to call transportation...which I did and left a message.

I then see on a friend's fb page that the van routes have not been completed yet and theu should be released on Wednesday.  That calmed me down...until the mail came and I got her bus tag, which had the "regular" route on it.

Insert alot of yelling from me and another text to my advocate.  In my head I'm thinking the school wanted the van for her why the hell don't we have it!!!???

I'm just about to call the school and bug out on them when I see that my stupid phone missed a call, from transportation.

Long story short we have a van and from the looks of the times Ana is the last one on & the first one off.  Thank GOD!

I don't know how next week will go, and honestly I am very nervous.  So just keep us in ypir thoughts and prayers because I know I'll need them!

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!