Best Device -hands down!

I cannot say enough about the VTech Baby monitor.  While we are not using it for its intended purpose it has saved Katie's butt and mine quite a few times.

This is the same thing that Zurg (Lynda) suggested to me months ago.  With the flood in the basement and the fact that Katie lived up on the top floor of our house...we hadn't needed to buy this for a long time.  But we *finally* finished her bedroom about 2-3 weeks ago...and I finally got around to buying a monitor.  Katie was going to just get one at the store on her way home one day and for some reason I was like..nah let me look into it.  This monitor ROCKS.  It has levels of volume and I can even adjust the sensitivity but it honest does NOT pick up anything other than her calling out to me.  I don't hear snoring (the dog's) or much else.  I do hear her tv if it's up loud but that isn't on all night.  What this monitor has done has allowed her to be in the basement and away from us and enables us to hear her if she needs help.  There is no way she could ever yell loud enough for me to hear her two floors away.  Just not gonna happen.  She got very ill one night vomiting and couldn't get up to get her Dexcom to check her numbers and I could hear her faintly calling to me.  I was able to press a button to talk back to her and get up to check on her.  INVALUABLE.  Also..for some reason (because she's a teenager? ) she does NOT hear her Dexcom when the alarm is going off.  I mean not at all.  So she puts the receiver by the monitor and I hear it no problem.  I don't have to get up and check it (when she was up near us in the room next door I never heard the damn thing but I can with the monitor).  And I can just press that talk button to talk to her.  Brilliant idea and I so appreciate this device!  And there is no static..it is so not your baby monitor from when our kids were babies!!!!

Finally I'll try and leave you with a photo of Katie's room all done.  The black paint is actually chalkboard paint and she chose all the colors and bedding herself.  So much fun to put together for her!

The JDRF Walk in photos

Thank goodness for my brother Tom...he was able to take a bunch of pics while we were being herded like cattle through the path on the walk and snap some cute ones.  Enjoy all!

Katie and her best friend Mel and sister Brianna

Katie with friends and sister AnnaGrace

Uncle David, Mike and friends 

Me and my girl!

Cousin Sue

Cousins Sue and Art

Uncles Tom and Dave

Uncle Jim, Aunt Ruth and the Uncles

Toni and Haze!!!

Pat and Nana- important volunteers and team mates!

During the walk- the gang

Katie with her Uncle Tommy- TommyTuesday

Herding cattle I tell ya!

JDRF Walk to Cure Diabetes

We are alive..I swear

I guess my family does follow me here!  I'm so sorry.  My 8 week masters course is winding down and while I still have fieldwork/processing next week and another masters course- I can finally *almost* breathe!!!

We did the walk on a stunning day two weeks ago now.  It was just a bit cool out and so lovely. We enjoyed the walk a lot..but we mainly enjoyed our family and friends and coming together to show Katie we support her in this struggle and love her.  Next year we might just move our group to a fall bbq at our house and do a Katie day.  Our goal was $5,000 but since I thought $1,000 would be major- raising almost $1800 was great!  I think they might not have added in any of our on-site donations yet but do not quote me on that.

To anyone who donated or walked- we would like to sincerely thank you.  It's a big deal to the JDRF for their research and to us.

So an update- Katie is doing pretty good.  She got approved after that lovely appeal for a pump..just in time for her to be eligible for her insurance from Starbucks.  :)  Figures right?  She's got a great insurance and can work as little as 20 hours per week or 240 a quarter in order to keep it.  It's going to pay a lot more than our Humana and we might eventually drop it when we switch over to the marketplace/Obamacare stuff.  We are truly grateful for Obamacare....when we had to pick up private insurance (because Kev is a contractor) we were denied coverage for me from a "prior" condition (aka...I was using advair after swine flue and they decided I had asthma).  So I got ICHIP which is essentially a discount plan when *I* personally hit $5,000 deductible.  Hahahaha.  Now on the marketplace I'm being offered something like 40 choices for healthcare..astounding.

Back to Katie- she's got the pump...she is having more lows than highs...but she's doing ok.  The dexcom hurts a ton..she's not a fan of it..but I like not having to nag her about numbers all day and it helps us to know how she is doing so I am not standing over her at night seeing if she is breathing.  She goes in for wisdom teeth removal this week- not looking forward to it.  She's in a lot of pain and because she's not "controlled" they will not put her under.  So we will see how she tolerates it.  Hoping it stops the last of her pain and she can work on feeling 100% again.

Her next appt we get the A1c test done again.  I can only assume it has got to be better than 12.1%.  I mean really..since they want you at was it 5-6%?  I'll have to update here when we get it.

The fridge broke a few weeks ago...got a scratch and dent one for almost 30% of the price maybe a bit more?  It works nice..but what a sticker shock.  I should not have stressed so much about it because then a week later the car needed brakes on all wheels and also bearings replaced.  Sometimes the amount of money flying out for issues makes me lose my breath.

I think we *finally* maxed out the deductible for Kev and the kids.  Please I hope so.  Wish it could be applied to previous bills we owe on...but honestly we go through everyday so happy that we are alive and together....I'm just so dang grateful that Kev is ok and we are so close and in love and that Katie only has Type 1 diabetes.  Things could always be worse.

Ok that's enough for now.....I'll keep you updated as we move along here in this new world....I'll post more pics from the walk soon!

Fee

Mike's Homecoming

Mike went to homecoming with a nice friend of his from school.  He was dressed up so nice I wanted to take some pictures of him with his sisters.  Man alive..they only get more difficult to get nice photos of all together as the years go by  LOL

I may redo our group photo shoot for the xmas cards this year..haven't really decided yet.  The girls love to dress up and take pics..but Mike is a man of let's get this over with (like his dad!) (I'll post the group pics separately!)

Anyway enjoy!

Mike and his "date"
This photo cracks me up because his flower didn't have a pin so he was trying to hold it up with his arm.  LOL

I believe after this photo he asked if I was done yet!

504 and school- secondary education

Forgot I had started this post.  Just a quick update to Katie and her college.  We had the HARDEST time with getting her an appointment to get accommodations in place!!! They literally acted like she was trying to get out of a test or work.  I had to go to every appointment and the gatekeeper/secretary who was the worst HAD type 1 diabetes.  Sigh.  I love having to go in with documentation from the nurse and printouts from the American Diabetes Association to explain myself.

But we did and she now has some things in place to help her.  Heaven have mercy when she gets to her next college.  I suspect this will be a lifelong battle...

Things we asked for:

Ability to get a snack if her numbers drop low or to get water if they go high (and there are professors who will not want you to leave class!)

Ability to have her dexcom and pump on her (again some ppl would assume she's trying to cheat on a test, etc)

Breaks on a test if needed to adjust insulin, etc.  

Not asking for the moon here people!!

My poor neglected blog!

I know it's been neglected because my family tells me.  Katie is still waiting on a ruling from Humana on her pump.  We are not thinking that they will approve her but we aren't sure.  No more news other than Kev's scans came back clear.  So at least one thing is good.

JDRF walk is happening soon (October 6th) so please consider joining us and once my one class ends I will have more time to update.  Plus we see the endo in a week to see how she is doing.

Appeal

Well we are being forced to appeal.  Our insurance declined Katie for the pump.  Which was fine....but she's been on the insulin injections now for almost two months and in that time she has not stabilized even a little.  Granted I don't mean stabilize like how most people think.  I expect there to be some highs and lows...but what I don't expect with her blood sugar is for Katie to go from the 200s and rising fast to then falling fast to the 100s and lower.  It's wreaking havoc on her system and making her too sick to want to do anything.  This is an active woman.  She's always on the go.  It makes me so sad to see her SO sick and not wanting to dress up, wear makeup, go out with friends or do anything.  And it's not depression- it's simply the damn numbers.  She's sick of the first thing her family asks - "What does the dexcom say" or "what are your numbers?"  And I don't blame her at all!

Needless to say- after seeing the endo in the last few weeks....they've changed her insulin again.  The lantus was doing the job but it was causing her bleeding and burns and they switched her to Levemir.  Some idea but not as flat or long lasting as Lantus.  Which works better (aka no burning or bleeding) BUT doesn't control the blood sugars as well.  In addition to this- her Humalog was changed from the kwik pen to cartridges.  This was to help her do smaller increments of insulin.  They adjusted her insulin to carb ratio too.  (More on calculating that in another post!).  All of this wordiness to say that I basically wrote with Tenney's help (Thanks Tenney!  You are a DOLL!).  I used a few sample letters I found online but entered in a bunch of information on my own.  Referenced the American Endocrinologist's Association and their recommendations.  Then if that wasn't enough I decided to look up some journals and directed them to actual tables and data that I read.  I am hoping all this plus the Dexcom data is enough to convince them that Multiple Daily Injections (MDI) therapy is not the answer for Katie and insulin therapy is.

I want a world where an artificial pancreas is available and there is a cure for Type 1 Diabetes.  An artificial pancreas is the insulin pump and CGM all rolled into one and it talks to your phone on an app.  In addition to this..it is able to calculate how much insulin automatically that your body needs based on the concentration of sugar in your blood.  That's a pretty awesome device.  It's in trials now and I hope it gets through quickly.  I really do!

Keep us in your thoughts.  I'll update here when I can.  I'm about to be in the field next week so won't be posting as much and classes start again for me in two weeks on Monday.

I'll post our appeal letter here after all is said and done for those that might want a template to use. Right now I don't want to do anything to hurt her process.  In six months we can get it and for free but to see your child so sick from highs and lows- you are willing to do anything for her.  Fingers crossed!  (Toes too!)