Definitely trying to kill me….

Since Abbi’s diagnosis we have always maintained an open and honest household.  She has known that even though I try to keep our food low carb, even on the verge of keto, if there is anything she really wants all she has to do is ask for it.  Everything has gone fairly smooth for the past 2 and half years… like eerily smooth.  I kept reading on Facebook and other groups about how other teenage and preteen T1D kids were hoarding food, putting in false numbers for their calibrations, and even just guessing when it came to putting in carb counts for their PDM.  I was like nope, not my kid, she knows she can tell me anything, ask for anything, and we have it covered. 

Summer went great, I mean she snuck food every once and a while but always owned up to it. We didn’t have any problems over the summer for the most part….

Insert MIDDLE SCHOOL HERE….

Let me just start by saying Middle School has been the devil since the start.  My child has changed in every aspect.  She hides her food, her feelings, her calibrations, everything.  We have tried to handle it without threatening her but at this point what else do you do?   She thinks she knows more than we know and she tries to dose herself which results in really high numbers then crashing down extremely low.  When I say extremely low, I mean in the 30’s.   So, once I caught on to that I started digging around the PDM app (for those of you not lucky enough to have an Omnipod Dash, it has a parent app that allows you to see the history).  Just wow!  She was giving herself all kinds of temp basals and different doses.  So, then I went into her phone and discovered she was using the phone during school. 

No, not for texting us when she was having a problem with her blood sugar or with carb counts.   She was texting her friends all day long.  Playing a game that she had on the phone and then I saw that she was taking bathroom selfies…. yep you read that right… bathroom freaking selfies!!!  I was furious.  I fought so hard for her to even have this phone in school.  For her to have the independence in school that she was so frivolously taking advantage of.   I fired her doctor and was driving her an extra 30 minutes the opposite direction remember just to get her someone that was more progressive for God’s sake!  I was so angry. 

So, I brought her home after school and decided I was going to give her a chance to explain herself.  Lies…that is what she gave me complete and utter lies.  Excuses after excuses.  I was actually quite calm even though I knew she was feeding me a load of crap.  I calmly took her phone and deleted every contact in it except her Dad, myself, her grandmother, and her grandmother’s cell phone.   I activated the screen time from iPhone.  This allowed the phone to be basically nothing further than a Dexcom receiver during school hours with the exception of texting those people in the “safe” list.  “Julie, how did you do that?”  Well, let me explain.  I have always said my kids would not have a cell phone period until they were 16.  It was the age I was able to get a cell phone and I don’t think kids needs a cell phone before they have a job.  If your views are different that’s great… mine however are not.

So, trust me when I had to get Abbi a cell phone for her Dexcom usage a small part of me died.  I knew I was going to have to cave on something I felt very strongly about.   So, when she decided to tell me lies about it, locking it down was the best thing ever for me.. secretly.   Well, I guess since she decided she had nothing to lose, she let loose on everything.  Apparently, she had been sneaking food at school and basically overdosing insulin for it.  She had been hoarding food in her room and showed me the hiding spots and Dad found some of the other ones.  When I tell you inside my head exploded and I screamed… outside though… beautifully calm. 

I have learned that yelling and getting upset with her doesn’t do anything but cause her to hide things even more.  So, WE sat down and I asked her where all of this was coming from?  She cried and said she just wanted to be normal.  NORMAL.  I felt my heart burst.  My poor girl.  We try so hard to make sure everything in her life was as normal as possible but the simplest thing as food was causing her to feel like she was an outcast.  Now did this heartbreak and honesty wipe out everything that she had done?  Absolutely not, it just changed the way I handled it. 

Even though we are trying to teach Abbi independence, she is a long way from being able to dose all by herself.  She still needs guidance and this was the main problem.  She was giving herself way too much for what she was “sneaking” at school.  It was causing her to go dangerously low.  So, I told her she had to run every decision by us first period from now on until she could be trusted.  And the kicker for her, was that I told her if I caught her doing this again, she would go back to the nurse for all dosing decisions from then out.  You have to understand, at home, we do eat extremely low carb, but if she asks for it, she usually gets it.  Same goes for school… all she had to do was send me a quick text message.  “Hey Mom, can I have a bag of Cheetos?”.  I might have done a big sigh, but I would have looked up the carb count, adjusted what I would give her and sent her back a “Yep, this is what you need to do!”.  I completely understand that Abbi is just a kid and I want her to feel as normal as humanly possible without jeopardizing her health.  My hope and my goal are that I am teaching her well enough habits that she will choose the good stuff over the bad stuff as she gets older.  (Although trust me, I know that kids will be kids and they are going to test their boundaries). 

So far, this has worked, but we will update this as time goes….

Taking care of you….

For the past two plus years I noticed that our lives revolved around our family, around T1D, and trying to balance work, school (I mean hey we have two parents in college too), just everything in between.  Around 6 months ago or so, actually right when I started this blog, I started becoming very overwhelmed.  Now many of you know what I do for a living, but I deal with a huge amount of stress in my job and other people’s every day dilemma’s.  I attempt not to bring that home with me but sometimes it spills over.  I remember looking at Andy one day and saying, “I think I need to go see something, I feel like I am reaching my snapping point”.  I think he understood but was slightly confused because I always put on such a strong face and try to make it seem like everything is okay all the time.  Well, that is what Mom’s do right? 

So, I held everything down for another month or so until it didn’t get any better.  It felt like I was trapped, like I wanted to scream all the time.  So, I made an appointment with my PCP.  I didn’t care at the point what people thought, at that point what anyone thought didn’t matter because I knew I needed help from someone.  When I approached my doctor with everything that was going on, she was very attentive and listened.  It was the most relief I had felt in months.  Not saying Andy hadn’t tried, because God knows he had tried, but talking to your husband about these things just isn’t the same as unloading everything onto a stranger.  After about an hour appointment and some tears, she decided an anti-anxiety medication might be beneficial since I seem to have a lot on my plate.  We started out on Wellbutrin on a very low dose.  She went over all of the side effects and told me to come back in 30 days or sooner if I didn’t feel any relief. 

Fast forward to about 3 months later, two dosage adjustments later and I was doing wonderful.  It completely helped with the overwhelming feeling.  There was only one problem.  It caused major headaches.  I had spent the last 4 years without a migraine or a headache which I had suffered from all of my life so to take this pill and have them come back, was it worth it? Life had started to calm down a little.  We had figured out how to handle some things with Abbie a little better, I had stopped school for a little while, work was slowing down (well as much as 911 could) … so I decided let’s wean myself off this and see what happens. 

I had also decided a couple other things about our life.  We needed to focus on us a little more too.  We had stopped that part, everything was about the girls.  And I mean everything.  From the time we woke up in the morning until the time we went to sleep.  Whether it had to do with diabetes, school, dinner, housework, what to do on the weekends or anything in between. We had stopped dating each other.   So, I decided at that moment I had every other weekend off and at least one of those weekend nights we would have a date night of some kind.  Whether we went out together or with friends it would be kid free.  I also decided I had left my friends behind.  I stopped seeing them, stopped hanging out with them and in short, I had lost myself.  So, I wanted to make time for them as well. 

Please don’t get me wrong, I know this doesn’t work for everyone especially those with newly diagnosed or those with very young children.  But Abbie is almost 12 and has been diagnosed almost 3 years.  We have four phones in the house and neighbors that are amazing.   Has it worked?  I think it has, it has helped my sanity at least.  It has helped show my daughter that we trust her a little more and gave her some self-confidence and she is doing wonderfully with her care.   We talk a little less each day about her T1D and more about us as a family.  Are we perfect?  Good lord no, not by any means, but we try and I think that is what matters and we try which is all that most of us can ask for.

So, the moral of this post is to always remember to take care of you.  If you are failing you, then how do you expect to take care of anyone else. 

XOXO

…there’s another kid, remember?

As most of you know Abbie is our oldest daughter.  She is 11 and her younger sister, Jamee, is 9.  When Abbie was first diagnosed this disease CONSUMED us.  I will fully admit I didn’t know how to deal with everything it took away from the family, how to give Abbie the attention she needed, how to maintain myself, how to maintain my marriage, how to maintain my job, and how to maintain my other child.  That was the big one….  I think the toughest challenge is the other siblings.  

When Abbie first came home we sat down as a family and tried to explain that until we got everything under control… (because that was going to happen right?) …  Abbie was going to require more attention and if Jamee ever noticed it or it bothered her we really needed her to step up and just tell us.   But I mean she was 7, what 7-year-old would look at Mom and Dad and tell them she felt left out.   Jamee was and still is the most loving and gentle child I have ever met.  She wants nothing more than to make everyone else happy, so for her to look at someone and tell them that they need to focus more on her would just not work in her favor.  So, for the first month or so everything seemed to go very smoothly.  Jamee even seemed to want to be overly involved. She would help get Abbie’s lunches and snacks ready.  She wanted to learn everything there was about T1D.   We thought it was very sweet and it fit very well with her nature. 

Then about a month later, she became very distant and started picking arguments with her sister.  She would talk back to us and would try anything to be defiant. She no longer wanted to help when it came to anything T1D related at all.  I remember looking at Andy and telling him this was an attention thing but I didn’t feel like we were showing Abbie more attention or I didn’t see a way to show her any less. I mean she had to have the amount she was getting right?  So, what could we do?  I mean it was a rock and a hard place.  Abbie was not self-sufficient enough to take care of the major or even the minor stuff without help and we couldn’t divert all of our attention away to placate Jamee.  And placate might be an awful term but at that time that is how it felt. 

I remember sitting Jamee down, just her and I, and asking her what was going on.  She denying anything of course and me having to pull it out of her.  She broke down into tears and asked if we still loved her as much as we loved Abbie.  (insert broken heart here) That’s when I figured out that since Abbie had come home, T1D had consumed us.  It had taken over everything, our walls, our fridge, our eating habits, our conversation, our family outings, even how we treated each other…everything.  And it was going to end that day.  Don’t get me wrong, T1D will always be there and it is something we have to talk about but we just try to take a lighter approach to it now. 

It’s the small things, instead of asking Abbie first thing when she gets in the car after school, “how was your blood sugar today?”, I ask her “how was school today”, or I speak to Jamee first.  We have put T1D on the backburner if you were looking in but still have tight control only because we have learned how to have a conversation without having the conversation.  We make sure to do lots of things NON T1D related and since that day we all made a pact with each other that if the attention turned back that way again we would speak up.  Has it happened?  Absolutely…. When Abbie went on the pump and the Dexcom our world was changed again.  The focus went back 100% on T1D, Jamee stepped up and put a halt to it.  So, we all worked together to make sure we maintained the family focus that we needed to have.  Does it get out of whack…yep all the time.  We are not perfect, no one is, and if they tell you they are they lie or it’s what they need you to believe.  However, we work on it daily and as long as my kids can grow up saying they know we all tried as a family… well that is all that matters to me. 

XOXO P.S.  My thumb is slowly healing hopefully, MRI is next week or so and we will find out if I have to have surgery or not… fingers crossed not…

Fight for what you want…

So far, we have gone through Abbie’s story from the beginning.  I explained our “denial” phase and how the next year seemed like the best and worst year ever.  I have told you about our trials with her old endocrinologist.  You been told about our fight with the insurance for her pump and her Dexcom.  And then how we fought to advocate for our daughter at her school.  I don’t want you to get the wrong impression, we LOVE Abbie’s school (well her Elementary school, we don’t know her Middle School yet).   However, we wanted Abbie to know that she needed to fight for what believed in and what she needed. 

As I told you she started out on a Tslim X2 back in October of 2018 and loved it.  She chose the pump, mostly based on features and because of the ease of the face.  It looks a lot like a phone.  I was caught between the Tslim and the Omnipod but I was not the one that had to wear it and would ultimately be using it on a daily basis, so we let her make the final decision.  She wore it with pride and the only time it caused her any kind of grief was at gymnastics when she had to unhook from it for an hour or when someone would ask about the tubing while she was waiting for her class to start. 

This was from October all the way until summer hit.   And that is when the major challenges set it.  You see my daughters LIVE in the water during the summer.  She discovered she had to unhook from the pump anytime she went near the water, which was every day.  Then she could only be unhooked for an hour at a time before she had to hook back up to it.  This began to get bothersome around the end of April just when the weather got warm enough to swim.  I think the final straw for her was when she went to change her site one day and the infusion needle was bent but we were not aware.   It caused her such excruciating pain.  From that moment on she had such anxiety over doing site changes it was an ordeal each time. 

I think it was around the middle of May that Abbie came up to me and told me she wanted to go back on shots.  She said she was tired of being on a pump and having to unplug for swimming and other activities.  I was okay with this but I knew it was not the only reason why she was saying these things.  I knew it was the anxiety over the infusion changes that had her willing to go back to shots.  So, I went looking again at other options even though I would be happy to let her be MDI if that is what she really wanted. 

I immediately went back to the original option of Omnipod and got her a trial pod.   She LOVED it.  She liked the freedom of no tubes and she looked up the YouTube videos of the insertion and it looked so much easier to do.   Now it was up to me to see how we could make this happen.  As most of you know, when you choose a pump you have them for 4 years period, unless you pay out of pocket.  I called her CDE and she got me in touch with their Omnipod Rep that very day.   He told me that Omnipod works a little different and that if the insurance would be willing to switch the infusion sets over to Pods then all I would have to pay for out of pocket would be the Personal Diabetes Manager.  I was pleasantly surprised to learn I would only need to pay $199 out of pocket for that and even that I could break up into monthly payments if I needed to.  So, a little over 2 weeks later we had her new Omnipod system in hand and were off to training.  

It has been about 2 months since then and we have even upgraded to their new Dash system since that one and I have to say Abbie is loving it.   She has tried every site available to her and she hasn’t complained once.  She loves the freedom that she can just hop in a pool and not have to worry about it. 

This was just one more way I learned we as T1D parents have to fight for our kids… and another way Abbie had to learn to stand up for herself.  She really had to look at what was important to her, figure out what she could live with and without, and decide if she wanted to stick with something or try something new. 

So, folks, we are about 6 months into this blog and I have to say it has been a welcome outlet that I hoped it would be.   I am hoping to have some new recipes coming in the next few days.   I am sorry the posts have been few over the past couple weeks but we are working on remodeling our bathroom and it has been taking a lot of my time.   As of this post, you are up to date!  Woohoo!  So, from here, I will be posting tidbits of things that I see are important, news facts, things that happen in our life etc. 

If you have any suggestions for the blog… ideas on content or a post idea or something I need to look into, please send me a comment and I will be more than happy to look into it!  Thanks for keeping up with us so far! 

What about school and 504s or IEP???

On February 27th, 2017 Abbie went back to school like nothing had ever changed for her.  On the back end though, her Dad and I had a big meeting with her school principal, assistant principal and nurse.  Was this her 504 meeting?  Nope, we knew nothing about a 504 plan at that time and to be honest we really didn’t need it.  Abbie was only going to the nurse before lunch and once she was completely off insulin 2 months later, she didn’t go at all unless she felt like she needed to.   This continued through her next school year because, well, again she was on no insulin until she was out of school so there was just no need.  We had another meeting at the beginning of her 5th grade school year, but again this was not a 504 meeting, we still had no idea about that and no one ever mentioned it to us.  This meeting was just to tell them what had changed and how often she needed to speak to the nurse.   For the first two months of the new school year, Abbie would get her Levemir (long lasting insulin) at home, and would need to take her Apidra (fast acting – bolus) insulin before lunch or for corrections at school. 

Everything went smooth until she got on the pump and got her CGM in November.  I remember there was a permission slip sent in for a field trip and a note.  The note read something like this:

Dear Mr. and Mrs. Eger,

There are currently 5 chaperone slots available and I have saved one for either of you.  I have spoken with the school nurse and she will not be able to attend the field trip that day.  We have also spoken with the district and they will not be able to provide someone to go, so one of you will have to attend the field trip with Abigail in order for her to attend.  Please let me know which of you will be attending and if Abigail has permission to go. 

Wait, what?  First off, she had been on her pump for over a month and basically the pump did everything for her.  All she needed to do was text me or call me and I could walk her through it.  Second off, both my husband and I work, why should we have to take off work to go on a field trip?  I thought something didn’t sound right.  So, I started doing some digging.  Insert the 504 here. 

Anyone who is not familiar with the American Disability Act and how it pertains to persons with Diabetes should definitely familiarize themselves.  Also visit: Special Considerations for School .  This page will give you tons of information about 504 plans, information about attendance, college, child protective services, emergency lockdown procedures and more! 

But back to the story and then I will give some more information.   After calling around, I was told that according to ADA laws they had to provide Abbie with someone who was trained in her T1D care on a field trip and that they could not prevent her from going just because her Dad or I could not chaperone.  The nice lady I spoke with at the ADA did tell me I needed to get a 504 Plan in place so that I had grounds to stand on in the future, but for now they would back me up if necessary.  I honestly didn’t want that fight right this second, as this was somewhere we had to get “acceptance” for my kids to go to school (they go out of district) and I did not want to do anything to jeopardize that.  So, we figured we would play nice, get the 504 plan in place and then we would have something to play ball with.  Andy ended up having some vacation he needed to use anyway, so he went on her field trip, while I drafted a 504 plan and we set a meeting. 

Apparently, Abbie was the first 504 they had ever had.  They had IEP’s but not any 504’s.  They had to scramble to get a coordinator together and of course they just used the IEP coordinator which was fine.  She called me and told me that the Superintendent wanted Abbie to take a battery of psychological and educational testing before the meeting to see where she stood at that moment…. wait, what?? (See a pattern here, huh?).

I refused.  Abbie made honor roll.  She had no problems in school whatsoever and did not need any type of educational testing.  The research I did stated that psychological and educational testing is done for IEP plans not for 504 accommodations which I had to reiterate.  They called me a day before our meeting and informed me that the Superintendent decided to honor my wishes and not make Abbie do the testing; umm, yea I know because it would have never happened.  Fast forward a couple of days to the meeting, we sat down with the same people from the other meetings plus the IEP, er, 504 Coordinator, and they went over my document which I will attach.  My first 504 was very long and drawn out, I have learned a lot since then and found others that flow much better.  But it got the point across.  It allowed her to use the bathroom when she needed, drink water in class if needed, eat a snack if needed, have her cell phone on her as a medical device, have a nurse present with her on field trips if necessary, and special accommodations for testing. 

The school year went very smoothly after that.  Only one teacher threatened to take her phone from her when she peaked at her blood sugar…yea that was nipped very quickly.  And one other substitute told her she couldn’t go to the bathroom, my daughter politely told her she had a medical condition and she could take it up with the nurse or principal but she was going to bathroom; got up and walked out.  J 

The first document attached is Abbie’s original LONG and DRAWN out 504 plan.  I think it was like 12 pages, ridiculous.  But it had good information in it. 

The second document, I cannot take credit for.  I have told you I am an avid listener to the Juicebox Podcast.  He has posted Arden’s (his daughter) 504 plan on his blog since the beginning.  This is a rendition of his.  You can find all of his 504 Plans at: Arden’s Day .

I think we’re alone now…

You know when Abbie was first diagnosed, I think I stated my husband and I knew absolutely nothing further than what the hospital told us, what the internet could briefly inform us, and what little I remember from health class about Type 1 Diabetes.  Don’t get me wrong the internet is full of fantastic information if you know where to find it but it can also be a very, very, very scary place for a newly diagnosed Type 1 Diabetic and/or their caregiver.  If you just type in diabetes and complications you will get disturbing images of missing feet, abscesses, among other nasty little things.  If you rephrase and type in Type 1 Diabetes complications, the images stay the same, but added in will be words like kidney failure, retinopathy, neuropathy,  liver damage, and heart problems.  You see things about how low blood sugars can kill you and how high blood sugars cause complications over time.  Well what the hell?

So basically between what I learned at the hospital and what I read on the internet the first few days was that my daughter had an incurable disease that would alter everything about her life.  On the plus side there was a medication I could give her to manage it and make her life mostly normal.  However, on the flip side, if I gave her too much of this medication I could kill her or if I didn’t give her enough of the medication I could cause long term side effects and kill her.  Wait, what?

One positive came out of Abbie having such a long honeymoon phase.  It gave me time to research, learn, and research some more.  I learned a lot about insulin in that time, a lot about carb counting, a lot about the reality and necessity that comes from being afraid of insulin.  I will say when it came time for her to be on a long lasting and fast acting insulin, I still panicked and was still very conservative at first.  I followed the doctor’s orders to the letter until, well until I didn’t.  As you have read until this point, I reached a snapping point where I knew that I could not wait on someone that only saw my kid every 3 months to make a decision about her care when I knew I could look at the data and make that decision little by little right now. 

When she went on a pump in October and her Dex in November I found the Facebook communities.  There are so many of them.  If you are newly diagnosed and you haven’t found them, please go looking.  There is T1D Mod Squad, You know you’re a Type 1 when, specialized Omnipod and Dexcom groups, Tandem groups…all of which have a plethora of information.  These groups are so helpful and full of people that genuinely care and know exactly what you are going through.  They welcomed me with open arms and help any way they can. 

So then I felt a little less alone, and my husband felt a little less alone because he joined those groups soon after.  I think it was around January or February of this year that I keep seeing people posting about a podcast in the groups that was fantastic and a blog that was extremely helpful.  I meant to go look at it then but life happened and I just didn’t have the chance.  It was around March when I saw the name come up again in a group and I found www.Ardensday.com which in turn led me to the Juicebox Podcasts.  I think as of today I am on episode 125 but Scott had currently uploaded episode 247.  I listen religiously when I am putting away groceries, cleaning the house, or driving to and from work.  He is a Dad just like you or me, his daughter was diagnosed when she was 2 years old.   He started out writing the blog and then went on to do the podcasts.  He is so informative, so caring, and just has so much to give. 

Scott Benner taught me about being #boldwithinsulin and how to #bumpandnudge the numbers instead of overcorrecting a low to get a skyrocketing high then overcorrecting that high to get another low.   Basically how to stop the rollercoaster.   He reinforced things that I had already been doing for months and allowed me to look at my husband and say, “see I’m not crazy (well maybe I am but in a good way), someone else is just as aggressive too!”.  We are taught to be afraid of insulin which keeps us in this cycle that higher blood sugars are okay but the higher blood sugars cause long term complications that will kill my kid too and I am not okay with that, I was never okay with that.  I stopped being afraid of insulin and learned to have a healthy respect for it but knew that it was there to help me if I researched the data and learned how to use it properly.

Another fantastic website and app is Beyond Type 1.   The website gives up to date news information and the app is a lot like Facebook but for anyone with T1D or their caregiver.  You can post about your life, your problems, your blog, your happy moments, your sad moments, or anything in between.  It’s a place to just connect and feel like you belong. 

Two books that have been like my T1D bibles are “Think Like a Pancreas” by Gary Scheiner and “Sugar Surfing” by Stephen Ponder.  These books have a lot of great information and can change the way you think about things.

Most of all, personally I think you need to just trust you.  You are with your kids 24 hours a day, 7 days a week, 365 days a year. You know how they act, how they eat, how they exercise.  You know how they react to certain situations and how they act on a normal basis.  You know their normal.  I know that when Abbie is happy, smiling, getting along with her sister and the entire family, wanting to play, she is in a normal range.   When she is argumentative, has an attitude, tired, grumpy, she is more than likely low.  And when she is hyper, complaining of a headache and a stomachache, she is more than likely creeping up higher than I like. 

And if you are reading this and you are the one with T1D you definitely know yourself better than anyone else… trust yourself!  That is the moral of it all for the caregiver or the person with the disease.  Trust yourself, trust your gut, trust the reaction, and trust the responses.  

Until next time….

The Last Straw….

When we left off I was very excited because of a Endo appointment Abbie and I had with a NP.  She had gotten us all hyped about Abbie becoming independent the coming school year if not sooner, and that we were doing a fantastic job.  We got home and felt fantastic and Abbie told her Dad all about the appointment.  It was the happiest I had seen her in a while. 

What people have to understand is what this disease does to our kids, it changes them not just physically but emotionally and mentally.  Over the course of the past year, I saw my daughter slip into a depressive state that Andy and I did not really know how to approach, and I am currently in school for Clinical Mental Health Counseling.  You take this normal, happy-go-lucky kid and tell them that everything is going to look the same on the outside but on the inside they have to battle something to keep themselves alive…every day.  While doing that they have to explain it to their friends, deal with bullies, deal with school, leave classes 4-5 times or more a day to go to the nurse, wear funny looking devices on their body, be singled out because they can have cell phones out in the classroom or drink juice in the middle of class.  But on the outside they look just fine, so to all the other kids they don’t understand and kick them while they are down, so to speak.

At the beginning of Abbie’s depression, I attempted to get her into see a counselor, but she did not respond well.  At this point we were doing most things for her, counting her carbs, making all of her treatment decisions, probably harping on her a little too much.  So I decided to step back and give her some responsibility because she sat down and told me that is what bothered her the most, she just wanted to feel like this was hers.  So I started letting her help me count her carbs, do her infusion changes (with me present and helping), changing her Dexcom, and everything in between.  Her mood and overall personality did a 180 over the course of a couple weeks.  She was smiling again and then that doctor’s appointment was the icing on the cake, because school was the last place that she felt singled out, like an outsider. 

So about a week after that appointment, my husband and I went on a cruise and the girls stayed with my mom for spring break.  Everything was great.  Abbie would text me with how she thought she should treat a number or a meal, and I would adjust if necessary but most of the time she was close or correct.  When we got back, the school handed out the schedule for SOL testing that would be happening at the end of the month in May and Abbie went pale.  These tests have played havoc on Abbie since she was diagnosed.  Last year, her blood sugar went up to the 350’s and there was nothing I could do about it. 

So, I got with the school and asked them how this was going to work with her Dexcom and treatment.  I was told she could not have her phone, that the proxy could have her phone but that any treatments had to go through the nurse.  So basically, if Abbie went high, she would be pulled out of the test by the nurse, treated and brought back.  I couldn’t be mad at the school, this is what was on her DMMP and they were just following that.  At this point I figured I would make a plea to her CDE and her Endo to change her DMMP at least temporarily to get her through her SOL testing. 

I called her CDE and made my case telling her that Abbie has shown tremendous responsibility over the past few months, that it was ridiculous that she had to miss so much class time and have to stop these tests when all I had to do was send a simple text message and the message get delivered to her.  Her CDE agreed and said she would state my case to the Endo and have him call me back.  So I waited.  And I waited.  And I waited.  By 3pm that afternoon, Andy got a little heated and called the doctor’s office to leave a not so nice message.   I would say 45 minutes after that phone call, my phone rang but it was Abbie’s CDE.  She said she put in the information to her doctor for Abbie to be independent, at least for the month of May until we were able to see him again in July and he denied it stating it was not in his policy to allow children to be independent at school until high school age.  She said she put in a message for him to call me as soon as possible.  I was livid.  I was not so sure a phone call was going to be the best idea, but I was up for it.

The next morning while I was training a class, my phone rang, it was the doctor’s office.  I kindly excused myself and stepped out into the hallway.  He started off the conversation nice enough, as he was always pleasant to speak to, very kind.  He seemed genuinely concerned as to the trouble I was dealing with and seemed to listen to my plea. When I stopped talking though is when it all changed.  He started off by letting me know that higher blood sugars for a 30 minute test was not going to hurt her.  I shot back letting him know that SOLs are not a 30 minute test, they can last up to 4 hours and these are not just higher blood sugars, she goes up to 350 or more.  He went on to tell me that that wouldn’t hurt her for 4 hours or we could give her a temp basal to battle it before and after.  I told him that made no sense considering I did not know how much she would actually rise.   It was at that point that he went off on a tangent about that no matter what I said that my child would not be independent, no now, not in middle school, and possibly not by high school. 

Umm what?

He went on to tell me that children that have too much responsibility tend to resent diabetes.  Well excuse me…. Of course she resents diabetes, it freaking diabetes, at least this is giving her control of it.  I explained to him her depression and how we dealt with it and how giving her the responsibility gave me my child back, except for at school, school was the one place she still felt different.   He told me it might have worked for now but eventually she will resent it again, she will resent me too for putting it all on her.  Well I don’t put it all on her, first of all.. you’re not listening! He then went on this long run about a self-help book he talks about at the Diabetes Camp and how I needed to be a better parent to my daughter by taking back control of her T1D before it got out of hand or I would lose her. I am pretty sure I was tasting blood considering he was now critiquing my parenting style.  The final nail in the coffin was when he told me that his decision was final, and it was his policy on independence and that he would make sure no other doctor in his practice gave my daughter this either.

I was done.  I hung up with him, called the front desk and cancelled her upcoming appointment.  I researched surrounding doctors and learned that I currently drove an hour and half one direction to his office, if I went the other direction an hour and a half, I had the Virginia Commonwealth University Children’s Hospital which was full of potential Endos.  I began drafting an email to potential new endocrinologists and have never looked back.  Two days later the Patient Director reached out to me over a phone call that last almost an hour and we discussed what I was looking for.  I never talked bad her current Endo because I believe we just had a difference in treatment outcomes for my daughter and that he looked at her like he looked at every other child.  I only told them that him and I had reached a fork in the road that we could not agree on and I was looking for a more progressive approach to her care.  She set me up with a new Endo and we have had one appointment.  So far, Abbie loves her and I like her a lot.  She listened and understood and she took the time to talk to me and to talk to my daughter like she was a human being. 

Moral of the story:  When it comes to your child… stand your ground.  You know what your child needs, what makes them happy and what makes them healthy.  You deal with this disease with your child 24/7 so do not let someone who only sees your child every 3 months dictate how they live their life. 

Keto Salmon Cakes w/ Sriracha Avocado Cream Sauce

Let me tell you , I am not a seafood person. I think we have had this discussion before.  But I recently went to the doctor and eating all this meat (specifically red meat) has caused my bad cholesterol to be slightly elevated.  So she told me to cut out red meat and eat more fish.  I loved salmon cakes as a kid, but my Momma used the salmon out of a can that you had to pick through and just nope, not doing it.  Plus it was loaded with mayo and bread crumbs and all kinds of carbs that I couldn’t have and Abbie definitely couldn’t have.  So I mashed a couple recipes together and came up with this one… and it was great.  All 12 cakes were devoured. 

Keto Salmon Cakes with Sriracha Avocado Cream Sauce

Serving Size: 2 Salmon Cakes w/ Sauce

(Makes 10-12 Cakes)

Calories: 542| Fat: 50g| Carbs: 10g total, 4g Net| Fiber: 6g| Protein: 10g

Ingredients:

  • 6 – 5oz cans of Pink Salmon (Skinless and Boneless, unless you want to pick out the skin and bones)
  • 3 eggs
  • 3/4cup of finely ground Salt and Pepper Pork Rinds
  • 1 ½ Poblano Pepper or Jalapeno Pepper, Finely chopped (whichever you choose)
  • 6tbsp of avocado mayo
  • 6tbsp finely diced red onion
  • 3/4tsp garlic powder
  • 3/4tsp chili powder
  • Pepper to taste
  • 3tbps olive or avocado oil for frying
  • Parsley for Garnish

Avocado Cream Sauce:

  • 3 avocados
  • 3/4cup sour cream or Greek yogurt (Greek yogurt changes carb count)
  • 6tbsp cilantro
  • 3-6tbsp of olive oil (to thin)
  • 3-6tsp of water to desired thickness
  • Juice of half a lemon
  • 1-2tsp sriracha (or more depending on how hot you want it)
  • Salt and pepper to taste

Directions:

  1. Drain salmon well.
  2. In a bowl mix, salmon, egg, chopped peppers, mayo, onion, ground pork rinds, and all seasonings (except olive oil).
  3. Form patties, cover with aluminum foil or wax paper. Refrigerate for 1 hour or longer.
  4. After an hour, in a non-stick skillet drizzle the olive oil and heat skillet until oil is glistening.
  5. Cook patties over medium heat 4 minutes on each side until golden brown and crispy.  Careful, they have a tendency to want to fall apart.  I use a spatula on the bottom to flip and a fork on the top.
  6. For the Avocado sauce: Blend all the ingredients together in a food processor or Nutri-bullet until smooth.
  7. I placed mine in a Ziploc Bag and cut the end off.  Then topped each salmon cake with the cream sauce. 
  8. Garnish cakes with parsley.

Totally figuring it out…. not…

Let me tell you something about T1D….

The moment you think you have everything under control, everything is tightly reined in, numbers are looking fantastic, something will change.  Whether the air shifts in the atmosphere, the stars are no longer aligned, your 11-year-old starts her period, or decides she wants to hoard her low snacks, just know always be prepared to change it somehow and don’t let it get you down when it happens, because it will happen. 

Christmas went by, January went by and we had everything under control, everything tightly reigned in only needing to do small adjustments here and there.  I had gotten very comfortable with changing Abbie’s settings myself and I was very careful in doing so. I made sure I only changed one thing at a time and by no more than 10% so that I could keep track of what I changed and what worked.  At this point, I never changed her target number, it remained at 150 and her correction factor had stayed the same at 90 mainly because I didn’t really know how these two numbers worked at least enough to do anything with them.

In February, we noticed her numbers started to creep up on us, mainly at night.  This normally signifies a growth spurt, so we ran some temp basals on her pump and it worked for a couple hours.  Then she would creep up in the 200’s, then 250’s and getting her back down below 150 to our comfort zone of 110-120 was very difficult.  I knew it was because of the correction factor and the target, but again didn’t know enough about them to change them. So, I tried to start reacting sooner to the numbers and arrows.  Once I saw 140 with a diagonal up arrow we started a temp basal, and gave a small bolus.  Hoorah! This worked, not quite as well as what I figured out months later, but well enough for someone who had really only been doing this for 4 months. 

In March, I received a call from Dexcom asking if Abbie and I would be interested in doing a Podcast for their #warriorup program.  They asked me some questions about Abbie’s diagnosis and some other questions about the way we ate and how we liked her G5 and then we were offered an opportunity to come to Nashville later that month to record the Podcast with @EricPaslay.  So, the end of the month rolled around, and Abbie and I were off to Nashville.  Now remember, we ate very low carb at home, but I decided while we were in Nashville, she could eat however she wanted.  Our first real day there, I took her to the zoo and the Country Music Hall of Fame.  The kid had to turn her pump off and eat Dip-n-Dots, drink a Coke, and have like 3 fruit snacks just to stay above 80.  Later that night after we had dinner with the Paslay’s and the other Warriors, we were walking back to the hotel and she was rising with an up arrow, then double up arrows.  Ok, I thought, she just needs an extra bolus and a temp basal.  I had swagged (guessed the carbs) dinner, and apparently swagged wrong.  But the numbers didn’t come down.  Up to 300, so at that point I figured it was a bad site.  We changed it, I gave her a bolus and she came down to around 210 for about an hour.  She hovered there until about 3am.  Then she went back up to 280.

For the next 3 days, Abbie ran at 150% temp basal and we would still have to give extra boluses. I had no idea what was going on, but I knew it wasn’t the site and I knew it wasn’t the insulin. But I also knew it wasn’t anything I could fix in Nashville, that unfortunately it was going to have to wait until I got home. So, with those settings it kept her around 140-160 on average, higher than I liked but better than the 250 she was running. When we got back home, I think we had been home for about 2 hours when the Dexcom went off with an urgent low alarm and Sugar Mate had sent me her location and was calling my phone. I remember looking at her and saying there is no way, you were just 160, go check by blood. The Dex was reading at 51, she stuck her finger and it said 49! And just like that it was over, thankfully I had not dialed in any permanent numbers, so it was easy enough to turn off the temp basal and give her some juice.

Hormones are a beast….

Seven days later, while at a VMI vs Hampton University Lacrosse game, my little girl turned into a woman.  And all those high numbers made sense.  During her cycle her numbers were beautiful.  Actually, steadier than ever, no lows, no highs right on the target where we wanted her to be between 90-120 all day and night. 

So, a few days later, maybe about a week later we had another Endo appointment and again we were seeing the NP and not our regular Endo…starting to see a pattern here huh?  Much to my surprise, I LOVED this NP.  She was attentive, listened, and for the first time in two years did not scold me for everything we did.  Actually, the first thing she said when she walked in the room was, “Well, I know you have to come here every three months to get your prescriptions and you A1C, but other than that I don’t know why you’re here, you guys are killing it!”.   She then told me that her A1C was at a 6.5%.  So, in 3 months we had brought her down from a 7.3% to a 6.5%, even with the highs and puberty and growth spurts.  I finally got my questions answered about target numbers and correction factors and discovered I was scared of them for nothing but to lower them slowly so I didn’t have a ton of lows.  We also talked about making Abbie fully independent at school, since she had shown a ton of responsibility lately.  She was no longer sneaking or hoarding food as she now understood the consequences and her and I were texting back and forth throughout the day about treatment decisions. However, she still had to go to the nurse to be able to do anything which required a lot of missed class time. 

Unfortunately, she said she couldn’t change Abbie’s DMMP (her Medical Plan that is required for school), that her primary Endo would need to do that but she would notate that she thought it was a great idea and that it should be done before she entered Middle School if not sooner.  She also notated that I had been making changes in settings on my own and was very competent to do so.   All around I was very excited to see her again. Oh, how one phone call conversation about 3 weeks later would change all of that….  

Coincidentally, this was about the time I discovered the Arden’s Day Blog and the JuiceBox Podcast. Let me tell you, if you are newly diagnosed or even if you have been diagnosed for a while, this blog and the podcast has a plethora of information. It has been a Godsend for me and allowed me to validate what I do on a daily basis. It has allowed me to show my husband that I am not crazy and not the only person alive that is not scared of insulin, that is aggressive or #boldwithinsulin as Scott Benner calls it. So go check out the Podcast and the blog at Ardenday.

Next up…. What do you do when you have reached your breaking point with a doctor that does not understand what your child needs or what you want for you child?