To My Friends and Acquaintances

Many of you do not know my background and I would like to share it with you so you can have a better understanding of me and why Kyli and diabetes is so important in my life.

Think back to the middle school years, some of us shudder while others think of all the good times they had.  Most people remember puberty, buying new "cool" clothes, making great friends that you could get into trouble with.  You remember getting to be a mouthy teen that was starting to discover who they are as an individual. 

That is not what I remember, at all. What most people do not know is that my Mom is a Type 1 Diabetic, that means she is insulin dependent. She was diagnosed at the age of 10 and by the time I was in middle school had had diabetes for about 20 years...and at the 20 year mark, most diabetics start battling some complications from diabetes. My Mom had given birth to my sister about 3 years prior and the stresses on her body from pregnancy had induced more than just one complication from diabetes in my middle school years. 

About me, in middle school, each year I was basically in the same awful clothes. Baggy sweats, baggy shirts, and not with the times.  I was quiet and reserved. Here is why, in 6th grade, one morning my Mom woke up able to only see from one of her eyes.  Within a month she had gone blind. My Mom's eyes were hemorrhaging from the constant blood pressure changes in her eyes due to the highs and lows of her blood sugars for so long. She was already scheduled to have surgery on her the first eye, but they refused to do both eyes in one surgery. My Mom was blind and I had a 3 year old sister that needed to be cared for. My Dad, he was busy providing for the family. Someone had to continue to work while my Mom was unable. At this point, I took up the role as a caretaker for my Mom, Mother to my sister and maid of the house.  I was no longer and never again a child or teenager for that matter. We were never told that my Mom would get her vision back, there was no guarantee that they could get the bleeding under control and save the vision she had.  For the next three years, we battled with the bleeding in my Mom's eyes. She would have surgery, wait for the healing of 6 weeks, which during that time they encouraged ONLY dark rooms and looking down, we would see her vision slowly come back and then POOF, it would start bleeding again and she would be fully blind AGAIN. This happened so many times, I lost count, and stopped getting my hopes up that she would get her vision back.  It was at this time I vividly remember praying to God asking him to give her her vision back so that she could watch my little sister grow up, I did not see myself as a child anymore and she did not need to see me grow anymore. After our long battle, my Mom's vision was finally restored, however the innocence and carefree attitude I had once had was gone. The things I cared for in life different, the importance of just about everything altered. During the time that my Mom lost her vision, there were three other women with diabetes that were going through the same thing, of all of them, my Mom is the only one with her vision.

Around the same time as my Mom's vision leaving, she also had her thyroid quit, this meant she needed to be on medication and with as long as it took to get her on the correct dose, I think she slept the better part of a year...even at work on accident.  The other health issue that developed was her kidney's started to fail. This is devastating.  There were medications that helped slow the damage, but about 3years ago, my Mom had her first kidney transplant.  It was very scary because even with how amazing medicine is nowadays, there was still a chance of rejection. Luckily, her kidney is doing wonderful. However, because it is not her kidney, she is still on medication to prevent rejection and always will be.  With the medication, your chances of developing cancer are higher. So we pray.

Where am I going with this?! Well, her it is. Kyli is now getting ready to celebrate her first Diaversary (Diabetes Anniversary- the day we were diagnosed), Sept 21st. I will remember the date forever.  Kyli has diabetes, we charge forward courageously. I show no fear.  However, deep down I have HUGE fears. Fears that can keep my up for hours on end.  What if Kyli ends up battling like my Mom, but maybe she is not as victorious. Now I know there are better medicines for diabetics, I know. I lived the battle with my Mom for the better part of three years, it was scary, it still is. Think as a parent, you do not want your child to have to battle anything. Mine already does, we battle for her life everyday, but it could be so much more and so much worse. Please understand, in one day, if Kyli is not given any insulin she could DIE in DKA. One day, that is all it could take.

I would like everyone to celebrate with us this month, by signing up or donating to us for the American Diabetes Association Step Out for Diabetes Walk. Even $5.00 will help put Kyli closer to never having to worrying about diabetes and the issues that go with it. We are pushing to get towards are goal and this week is Team Week, we have many challenges that we are trying to accomplish.  Come walk with us and see how many people you can really touch.  This walk is to celebrate people with Type 1, like Kyli, and Type 2 which is generally older people.  We had a blast last year and would love to have a larger awesome team this year.  If you have any questions, about Type 1 or about the walk please let me know. Here is our web page for the walk: http://main.diabetes.org/goto/heathergochenour

The 2 O'Clock Hour

As a parent of a child with type 1 diabetes, also known as an insulin dependent diabetic, I would like you to know about the dreaded hour of most parents of the younger children...it is the 2 o'clock hour.  At 2am, most parents of a t1d will have their alarm clock go off so they can get up, drag themselves to their sleeping child and proceed to check their blood sugars... Right before entering we each feel our heart skip a beat, our blood pressure rise, and we will hold our breath in fear that this time when we go in, we will not see our child's chest rising up and then down. Once we go in and thank God that our child is still well, we will bow out the air we were holding and then proceed to check our child's blood sugar. Depending on the outcome of the test they will do one of 3 things... 1) Think Holy smokes! What did I feed that kid when they see a blood sugar of 200+ and then proceed to pray that while they give their child a shot, they do not wake up.  2) Think Oh Crap! What did I do wrong now when they see a blood sugar of 70 or less. And then proceed to try, yes TRY to wake up their child to feed them sugar.  3) (and the least likely) Go back to sleep and think I got it right tonight! YAY! We both get to sleep!

Thankfully for some, technology has brought us a long way. We now have things like our CGM (Continuous Glucose Monitor). It has let me sleep more easily on good nights and alerts me of bad nights, and then I am up 5+ times a night. But, I am so thankful to know of the bad nights and I am even more grateful for the full nights of sleep.

A day...

If you have ever wondered what it would be like, here is a sample.  I really want to do this with Kyli so all of our friends and family can see what SHE goes through, not Mike and I, but Kyli.  This little girl last night dropped very quickly and it was at bedtime.  She went from a safe number over 120 to 66 in less than an hour.  She was asleep already when I had to check her sugars and she was asleep so quickly because of her low, that is what they do. The only reason I checked her was to get her CGM-continuous glucose monitor up and running for the night.  If not for her CGM, I would not have checked her until 2am, the consequences of that are terrifying to me. Most likely, she would have been either unconscious or near death.  God had a plan last night and I am just thankful for it. 

http://m.youtube.com/#/watch?feature=youtu.be&v=OG7GX8xpbj4&desktop_uri=%2Fwatch%3Fv%3DOG7GX8xpbj4%26feature%3Dyoutu.be

This brings tears to my eyes, because in 4 years, this will be Kyli.  She will be an amazing and beautiful little girl. She will be in tune more with her body than you and I most likely ever will, she has to be.  She will know when she needs to stop playing to go check.  She will be taking care of her self at least a quarter of the time.  She is and will always be my Hero!

My 30th Birthday Night

Yesterday, I turned the BIG 3-0.  During the day, I was lucky enough to get a nap in since the day before I was hit with a stomach virus.  I knew Mike had some birthday plans for us, so I wanted to make sure I was energized enough to go out and have fun.  So the evening rolls up and I am feeling good, until Mike tells me we are going to leave the kiddos at their Grandma Bunny's.  Here is the thing.. I love Grandma Bunny and especially the way she cares for our kiddos.  She is amazing, but the hard part for me is giving over the control I do have Kyli's diabetes and entrusting ANYONE with it but me, this goes for my hubby as well. Why, you ask? Or maybe you think I am controlling..well, it's true but I have reason. I am a SAHM and when I have Kyli everyday 24/7, I can manage her diabetes damn well and I am VERY proud of that. It means, we are keeping Kyli healthy for the long haul. So, it is difficult to give that up. Plus, no one knows how her sugars run like I do, I can generally anticipate what is going on. Everyone should be proud of me though, I gave Mike a quick instruction of what he needed them to do, packed up all the kiddos stuff and sent them on their way. I knew Mike had a few surprises up his sleeve and I did not want to damper all his hard work.

I had an amazing night! Mike took me to Rodizio's!  It is an amazing Brazilian Steakhouse and when we got there, friends and family met us there! It was so nice to sit and relax with everyone and watch us eat until we were ready to explode! We were not finished there and Mikey took me somewhere I have been wanting to go for YEARS! He took me to Sipping 'n Painting. These are the awesome places where you get to drink wine and be instructed on how to paint the picture in front of you! It was AWESOME! All 10 of us, men and women sat and painted! So COOL! Plus the painting turned out GREAT!! Oh, and I had a whole class of painters sing "Happy Birthday" to me, pretty awesome.

Here is where it gets sketchy.  We managed her sugars while away through phone calls, thank goodness for cell phones. Her numbers were right on, what I did not take into account, being at Grandma's. When she fell asleep, she started to bottom out. At 2am she was at 119, well she had another 3.5 hours of insulin in her body to break down and I knew we would end up LOW. I had to wake her up and get her to eat, fruit snacks, milk, something to tide her over.  Unlike usual nighttime wake ups, she was EXHAUSTED! She did not want to wake up. She told me "Go AWAY!" several times. This could not deter me, this was my child's life at stake. I had to wake her up. Last night, she broke my heart, she was so tired. All she wanted to do was sleep and I kept pushing her to wake up at 2am. It took me the better part of a half hour to get her awake and another 15 minutes to eat. She just cried. She cried for at least 30 minutes and I have never felt so sorry for her to have this awful disease. She cried loud enough that my sister who was downstairs on the other side of the house heard her and came up at 230am to see if everything was okay. If I do not shove sugar down her throat at 2am, she might not wake up the next morning. She has told me during our early morning binges, "My tummy hurts." I have to tell her, you have to eat it. Now, I am not a breakfast person, so I can imagine how she feels being awoken and force fed sugar. I would feel sick too. But the tears we had last night, this was one of the first times, besides hospitalizations that I have really cursed diabetes in my head. It is not fair to have to wake a 3yo, it just is not. She finally ate a cake pop and then somehow ate fruit snacks too. Apparently I was half asleep because the hot milk I had warmed was left in her room and she drank that too. BAD MOVE! At 5am, when I woke to check her 344! God must have stepped in because we managed to wake up under 200, somehow.

I will say there is a plus out of all of this, last night during her tears, I had the privilege of holding and comforting my child. While I was almost begging her to stop crying, I got to hold her and snuggle her and tell her it would be ok. She trusts me because she finally came around and by the time I was tucking her back in, I had smiles and "I Love You Mommy." But I am going to tell you last night was a rough birthday night. If God could have given me one birthday present, I would have gladly taken Kyli's diabetes from her.

Oh the Changes We Are Going to See!

Kyli has had diabetes for 8 months and it has been a LOOOOONNNNG and short 8 months.  When I look at how much has changed, I am in awe.  Our true and easier Honeymoon Phase was a good 6 months. When I say this, I mean that Kyli's body was doing most of the work during that time. She would need a shot of Humalog, maybe once every two days and we were not on a long lasting insulin and I slept through the night NEVER worrying about whether she was going to drop too low or not.  It was awesome and a great way to ease into her having diabetes. 

I left my job Feb 19th and I swear, Kyli's body was waiting for me to come home, because within 2 weeks of me being home, EVERYTHING started changing. We went from the one shot every other day to one shot of Humalog a day. Within the last month, I things have changed even more. I am pretty sure we are on our way out of our Honeymoon period. Kyli is getting anywhere from 4-8 shots a day. We do a minimum of 6 blood sugar checks a day and we exceed that most days with about 8-10 checks.  The other day, I was looking at her fingers and saw that they were dry and her fingertips were peeling, the sad part was that the dead skin coming off looked like Swiss cheese with all the holes in it from blood checks...Kyli is my hero though, I never hear complaints from her about blood sugar checks.  The other big change for me, I am now afraid of nighttime lows.  I am up until at least 11pm every night and do a check before I go to bed, I then wake up EVERY night at 2am and do another blood sugar check.  Based on that result will determine if I am up at 4am for another. Last night, I was up at 4am feeding Kyli milk and fruit snacks, waiting 15 minutes checking her again, and last night we had to do it again. The whole while she gave me her cheesy grin and told me she loved me. That is one amazing little girl!

After experience, I can say...Diabetes Stinks! But I am also going to say that there are some things that I get to experience that parents without a diabetic child may not get to or maybe just not as often.  I read this off another blog and it is true, I get to hold my child's hand every day not just while we are walking, but I get to really look at her hand, see how it has changed and give her kisses.  When Kyli has sugar lows or highs, I have no choice but to stop what I am doing take care of her needs and then SNUGGLE with her until she feels better, and I LOVE SNUGGLING with her, the rest of it sucks but not the TLC. I am more in tune with Kyli because I have to be, I know her personality and quirks better than other parents may know their child, because I have to. It can determine a life or death moment but it also means that we have a very close relationship and she already feels VERY comfortable talking with me and the love and trust that I see in her eyes when she looks at me, it makes me want to cry.  She understands that I have to give her little huts each day, but still somehow manages to trust and love me with all her heart. I don't know how she can be so full of love, but she is.  She amazes me each day with how much love her holds, just this morning she gave Mercy (our dog), her bowl full of oatmeal.  The bad part, we did not get to carb count before this but when we asked why she gave it to Mercy...she said, "Mercy looked sad. She did not want a toy, so I gave her my oatmeal." Was the dog happy afterward, of course! She was given extra food!

The one comfort I have going for me right now that probably keeps me from going crazy is technology.  We have started the process of getting a Continuous Glucose Monitor (CGM) and in the very near future we will start the process to get a pump.  These will let me sleep a little better at night and we will not have to do shots, only a site change once every three days.  So much better for her, and we can make sugar corrections much quicker to keep her from having high sugars. YAY!!

This is Kyli and Noah at the Mammoth Game. We went with the ADA, it was a blast. This was after a nap for Miss Kyli...

Hospitalized Again...

Mike and I took our first trip away from the kids the week of Noah's Spring Break.  We went to Las Vegas with my mom and my sister.  While we were gone, Kyli stopped eating pretty much all together...I didn't really think anything of it other than, she probably just missed us.  Well, we got home and two days later, she started vomiting, sugars dropped and ketones were high...I tried to manage it and an hour later she threw up all the water I gave her and then some, sugars dropped to 47 and ketones were 4.7. To Children's Hospital ER we went...And there we stayed for three days. 

Our hospitalization was for a "Hypoglycemic Diabetic." This is irony as its best. They were pumping sugar into Kyli and we were lucky to get her sugars to be close to 100. We spent a night in the PICU.  It was awful. Kyli had 2 IVs and then had 3 blood draws from her feet.  We are still scarred. Me, probably for life.  After the 2 IVs and 3 blood draws, I was holding Kyli to comfort her. I had tucked her into my arms and covered her with a blanket, she said while crying "Hide me Mommy."  Yeah, I cried.  So sad. I hope to never hear that come out of her mouth again.  Kyli was pumped full of sugar steadily for two days...she needed it.  Finally, I asked them to take her off of it so we could see how she did.  Well she dropped consistently for 6 hours and then her body finally started to take care of itself.  Thank Goodness!

The third day, they freed us and guess what...it was EASTER!!! Does anyone else find it odd that our first hospitalization we were released on Christmas and our second was Easter?  Only thing I have to say, is that I wish the hospital had blow dryers!


Once again I will say it though, I am so thankful to have Children's Hospital so close to us! For those that don't understand the dangers, Kyli's numbers were very low.  To the point that they were concerned she would lose consciousness and that her body may start to shut down...Scared, yes I was especially when she fell asleep on the way to the ER.

Here is hoping we will not go through this situation again!

Changes

Wednesday is the beginning of a HUGE change for my family. Mike and I have made the decision that I am needed at home.  We looked at our life and where I was needed versus what we think we need.  With Kyli's diagnosis and her ever changing sugars, we decided that Kyli needs me to be home so that I can be her primary caretaker, rather than the 3 she has now.  I am so excited! I was able to be a SAHM with Noah until he was about 3.  I loved almost every minute of it. I had to go to work when Kyli was 4 months, so we are going to have some catching up to do.


The last appointment Kyli had, her carb ratio changed and it now means that Kyli needs around 2-3 shots a day.  Being that she is three years old, it is not always the easiest feat. Plus, she seems to do best getting her shots from me.  The biggest concern I have right now is that Kyli is still in her honeymoon period,meaning her pancreas is still working, but slowly dying.  Also meaning, that we have to watch Kyli closely to ensure that her insulin doses are where she needs them to be and not to little.  The insulin we give her right now ensures that her pancreas does not have to work as hard allowing it to live longer and keeping Kyli "healthier" longer. 

I have recently acquired a pen pal who has a daughter close to Kyli's age that also has diabetes.  She has been awesome and also introduced me to a FB page that is called "Diapers and Diabetes." This group is amazing, very supportive and we are able to talk about the concerns that we have for younger children and the battles we experience with them.  They will also be very useful when it is time for us to get a pump. I know that FB has a bad rep for some, but this group is going to help me through and helps me get through some of that sad times. They also have given me some great ideas and resources that I didn't have before them. 

We survived a double ear infection that came with a head cold and serious fever.  No ketones, no high blood sugars, and overall a happy baby.  How? I have no clue, but I want to add that Noah had the same thing all week.  I think as a Diabetes Mommy, I figure that Kyli's illness will mean that colds, flus, and other bugs will hit her harder.  This week was an eye opener, it doesn't have to be that way. While, I still have to monitor her health more closely, Noah had the exact same thing with the same symptoms and ear infections for the exact same amount of time as Kyli.  It was a nice smack in the face reminding me that she will live as normally as we can let her. Not everything is because of her diabetes. Some bugs just last longer than others.

Let our new healthier adventure begin!!

Check Up

Kyli had a check up last week and I am proud to say that it went the best they have so far!  Kyli's A1C was 7.0, which is awesome :) She is honeymooning so her body is still helping, but the longer it stays like this the healthier Kyli will stay! This was the first appointment that really has felt positive for me.  They were really happy with all the daily blood sugar checks we do. As a matter of fact they told us we could stop with the snack sugar checks for now...while that sounds peachy, often after he nap, her sugars are low and we need to know how to bump her. So we may take the recommendation, but maybe not for my own comforts sake and Kyli does not mind finger pokes...We changed her carb ration for Breakfast and Dinner, if she eats 25 carbs she will now get a .25 unit dose of Humalog.  Compared to most diabetics, this is nothing, but nonetheless we still have to give her a shot.  The only thing that concerned them was that Kyli has not gained weight since our September diagnosis. She was sick right before Christmas so here is hoping we have a little poundage gain by April. They were also very happy with how her Honeymoon Phase is going.  She still requires very little insulin and that makes me happy.  She also manages quite a bit of the sugars on her own.  So yay for the parts that are working!!!

Our Christmas Adventure

Our Christmas celebration started off just the way I wanted it to.  On the day the world was supposed to end, ours started a new adventure, Mike graduated from CU with his bachelors in Business!!!

 

We had an awesome time. The kids behaved amazingly and all was well.  Well, except that Kyli's sugars had been running high for about a week and a half and I had convinced myself that her honeymoon was over...

 

 

Moving forward ONE day, Kyli wakes up the next morning, within 5 minutes of being awake, she vomits. Uh-oh...She then proceeds with these actions every one to two hours and cannot keep anything down.  Immediately, I find my sick management packet (thank you Barbara Davis Center!) I grab Kyli's notebook and start logging, temps, sugars, ketones and anything she drinks.  I watched her ketones go from healthy to dangerous levels in two hours.  This is when I curse her pancreas for not working, she could not manage her sugars while under duress...I have to call her Dr. They tell me to watch her for a little if nothing changes, head to the ER.  Of course, nothing changes so we head to the ER. And really when you have a sick 3 year old, most being like Kyli,  I could promise ponies and swimming pools full of chocolate and she wouldn't do what I want her to. A few things I learned about Er's, Kyli and diabetes.  1. Make sure they are not an overly busy hospital. 2. Make sure that they know a few things about diabetes. 3. When your endocrinologist tells you to have the ER Dr call them, express urgency and make sure they actually do.  4. AND THE MOST IMPORTANT- make sure they have a children's wing. 

 

Kyli's blood sugars were dropping so quickly and her ketones were skyrocketing, all I could think about was getting her to a hospital to get her help, so I choose the closest one. BIG MISTAKE!  For now on, I will drive her to Children's Hospital, it will take about 10-15 minutes longer, but I will feel safer and know they choose to be in direct contact with Kyli's Dr's. 

 

So, we sit at the closest ER for about 6 hours, the whole while, Mike and I are testing her blood sugars nd her ketones every hour, this particular ER checked her blood sugars with their machine ONCE and then it took them hours to get the results back.  We could not get Kyli's sugars above 100, for her that was BAD!  They finally called Kyli's doctor and determined she would need to be watched awhile longer. So they juiced her with sugar, got her up to 107 and let us go quickly.  Mike, Kyli and I headed to Children's, while this is not for most, because of Kyli being in her honeymoon phase, we have a little leeway and knew we could safely get there on our own.  Once we reached the ER at Children's (they knew we were coming) we got in almost immediately and her sugars had dropped to 74 in about 40 minutes.  Just so you know, an average blood sugar for Kyli should be between 80-200. We are observed a little longer and they realize she cannot be stabilized, we are finally admitted at 11:00pm. 

 

Let me just say this, with how quickly things happened, I knew Kyli was going to be admitted, as a matter of fact, I threw together a quick bag with some belongings so that I would have something.  Thank goodness, they only downfall, I did not think we would be in the hospital for a total of 4 days.

 

Kyli struggled with getting better, her sugars would not stay above 100, they had to raise the amount of sugar in her fluids three times. She did not want to eat, every time she went to nap, her numbers plummeted and the doctors felt the urge to wake her and try and get her to eat, which did not happen. They second day she decided she was not quite ready to start getting better so vomited all over the comfy clothes I had brought to make that very point...Mike had to make a clothing run so I had some thing for the evening.  The third day she finally started eating a bit but still her sugars would not increase. The evening of the 3rd night, also known as Christmas Eve, they decided to try a change, they started weaning her off the sugar in her fluids until they stopped the fluids completely, she had one drastic drop, but her body recovered and was able to stay around 100.

On Christmas Day, Santa dropped by and brought Kyli a Build a Bear.  Not long after, we were able to bust out and take Kyli home.  While I was waiting for Mike to bring the truck around, a young little girl and her family came into Children's with gifts for some children.  The young girl gave Kyli one of the gifts.  It was a full sized American Girls Doll.  Miss Kyli is the proud owner of a Josefina doll. As awesome as the gifts were, it was the best day because it was the first time I saw Noah in three days. We were blessed enough for Mike's family to watch him while I stayed with Kyli. Noah was even sweet enough to leave Santa a note asking him to leave all the presents at our house so he could open them with Kyli when she came home. He is such an amazing little soul.

 

 

While I would love to say after that everything was great, that is not entirely true. Kyli took the better part of another 2 weeks to get completely better. She struggled with her sugars getting above 100 and with eating.  That evil little bug she had did a number on her.

 

All in all, we learned quite a bit about Kyli, diabetes and what it means in coordination with illness. At least until Kyli is old enough to listen and do what we tell her, I hate to say it, but we will end up in the hospital each time some thing a little more serious than a cold gets her, but I am okay with it, as long as she is cared for by knowledgeable and loving nurses and doctors. 

 

Oh and those high sugars Kyli had had before her hospitalization, they were because of her looming illness...

Diabetes

Since Kyli was diagnosed on Sept 21, 2012, only about 3 1/2 months ago, I have struggled with the idea that this is going to be a permanent aspect of our lives. I do not consider it a burden, or a punishment, or anything like that. What I struggle with is that this is not something we can take a vacation from. Wherever we go, it goes.  EVEN when we are in vacation, we still have to be concerned about her sugars, more so due to the change of activity and excitement. If we get sick, we have to check it more often. If she is more active than normal, we need to make sure we are checking her sugars. If she sleeps late, if she eats more than normal, if she has a lazy day, if she goes for a walk, if she goes to gymnastics, whatever she does we have to ensure her sugars are within a safe range.

The other day, while I was laying down with Kyli after our hospital visit of 4 days (that will be another day), Kyli being her very loving and sweet self, grabbed me around the neck, hugged me ferociously and then said, "Mommy, I love you" and then of course sealed with a big wet sloppy kiss.  In that moment, I realized that EVERYTHING is going to be more that just okay. Mike and I are taking great care of her and she is loved, very loved. She is happy and she truly only HAS diabetes. She is NOT diabetic. It is a characteristic only, she is so much more.  What makes my heart so happy is that now, almost always, I view her has Kyli and that is it.  Only when we have to test sugars, or she is acting odd does the reminder that she has diabetes come out. The fact that I have to view her with diabetes still makes me sad, but at the same time it empowers me.  I want to spread knowledge about Kyli and her disease. People seem to understand so little about type 1 diabetes versus type 2. As a matter of fact, yesterday I went to Barnes and Noble and looked at the books they have for diabetes. EVERY SINGLE ONE was about type 2. While I understand that more people are diagnosed with type 2, type 1 needs more books out there and more knowledge. We need books out there that show parents like me that we are not alone and that we are not the only one who has a child diagnosed at a very young.  The only reason I am more comfortable with Kyli's diagnosis at 2 was because we did a Diabetic Retreat a few months ago and I was FINALLY able to speak with a few parents that had an early diagnosis too. It is nice to have doctors that know how to help Kyli's diabetes but it is completely different when it is your own child.

What I guess I am trying to say is that I know that God will never give us more than we can handle, but I have found a peace with what he has given us and a strength in knowing that we can prosper with this diagnosis.

Wordless Wednesday

The Words I Have Been Looking For...

Found this on one of our Facebook diabetes favorites. It explains so much of what I think and feel everyday, EVERYDAY.  It seems the more you research and inform yourself, the more fear you build. 

Diabetes is a disease which has caused me to realize that a child can be at death's door faster than one could ever have realized, but be given the strength to be back on the soccer field a few weeks later.

Diabetes is a disease which causes a premature separation of the parent and the child, but at the same time creates a heightened level of dependence.

Diabetes is a disease which makes you realize that you may not always know the right care for your child, but at the same time must trust your child to the care of others who know even less.
...

Diabetes is a disease which forces disclosure about a "disability", but at the same time makes you realize how very lucky you are.

Diabetes is a disease which makes you realize that reading can inform, but it can also create fear.

Diabetes is a disease which causes us to think "Gee, I'm glad it was her and not one of the others....", but then you wonder how you could have ever thought such a thing.

Diabetes is a disease which makes you communicate hourly with your spouse, but at a time when you may not want to.

Diabetes is a disease which makes you wonder why, when your spouse gives a shot it doesn't hurt, but when you do, it does.

Diabetes is a disease which forces you to realize that the endless "nighttime feedings" of your infant will not pass, but will only be transferred to another child. (Surely dual alarm clocks are a good thing!)

Diabetes is a disease which requires some restriction of cultural celebration, but at the same time provides a most healthy intake of calories.

Diabetes is a disease which necessitates the restriction of concentrated sugars for good health, but requires you to carry pure sugar in your purse to save your child's life.

Diabetes is a disease which requires a rigid family schedule in both meal planning and timing, but at the same time has made running a busy household more smooth.

Diabetes is a disease which requires restricted food choices, but at the same time has provided an opportunity for culinary creativity.

Diabetes is a disease which make you think you can't possibly squeeze anything else into your life, but then you realize that you can.

Diabetes is a disease which causes you to ponder that "Now, I lay thee down to sleep, I pray the Lord your soul to keep....." is no longer a simple prayer, but a fervent request.

 

This picture was taken less than 30 minutes before she was diagnosed, so hard to believe even still.

Happy National Diabetes Awareness Day

 

Kyli had a wonderful day. To those that wore blue...THANK YOU for supporting Kyli and for supporting our family.  Kyli may have diabetes, but is does not rule her!!

 

It's Not Easy

Today was a rough day...Mind you, Kyli was in excellent spirits, but her sugars...WHAT THE HECK?! She ate like normal, nothing unusual, nothing special, so sugary treats and WOWZA. Her sugars were off the charts!  She woke up fine, had breakfast, 2hrs later, almost 300!  Had lunch gave her a shot, took a nap, woke up 55, WHAT?! Gave her some carbs to boost back up to 80, gave her a snack, before dinner 300, AGAIN?! Fed her dinner, gave her a shot, before bed 258, HUH?! Not sure what happened today, but I am hoping tomorrow gives us a better set of numbers.  I am still confused as to what happened, maybe our Dr. can make sense out of it on Friday, here is hoping. 

Anyway, I thought I would tell you briefly of some of the complications that can arise for Kyli in the nearer future.  Here are some of the things that most people will never know.  When puberty hits for Kyli, the hormones can be affected by her diabetes.  This can give Kyli early onset of puberty, average for non diabetic girls is currently around 10, you do the math.  If Kyli's sugars are hard to control, it can make puberty not as effective as a normal child, meaning she may not develop properly, growth could be stunted, she may end up looking like a child.  We have a friend who is a brittle diabetic, meaning it is very difficult to handle, he is a year younger than me and still looks like he has yet to hit puberty, including no voice change, no facial hair, nothing.  I cannot imagine how difficult that must be and on top of that I cannot imagine how cruel the kids were to him.   Finally, it means she could start puberty late, personally, this would be ideal in my world.  Kyli has had to experience so much in her young years, that this would be okay.

On top of these worries, I have been told that puberty is more difficult for diabetics because the new hormones can make managing their diabetes more difficult, doesn't that just sounds like fun.   Hopefully, I can continue my open communication with Kyli and we can keep her as healthy and happy as possible during the teenage years.  What happened then can make a huge difference on when she is older.  Hopefully we can prevent a moment of the "I Don't Cares" as well and Kyli will not end up in the hospital.  So far, almost every person I have talked to, this has happened in the teenage years and they have each ended up in the ER from it.   UGH.

Diabetes Awareness Month- Week 1

Hello everyone,

November is diabetes awareness month, with that, I am going to ask everyone to wear blue every Friday and especially on Wednesday November 14th to show support to those with diabetes and those with family members or friends with diabetes.

Diabetes does not just effect the person with the disease.  It effects the whole family.  Since Kyli was diagnosed, about a month and a half ago, our whole life has changed.  All of us, Kyli, Mike, Noah and for me.  Kyli has had a lot of change because of the consistent finger pokes 5-10 per day and shots.  She continues to handle it like a champ.  We have had only 2 bad shots and by bad, I mean she cried.  For Mike and I, I think we have had the mos change.  We might as well have diabetes.  We ensure Kyli is taken care of, check her sugars, watch for signs that she is going low or high.  Noah has had a lot of change as well and he has adjusted quite well.  For him, he has lost some attention, but he has become quite involved with Kyli's blood sugar checks.  We have also had a house overhaul.  We have one bag of candy for when Kyli's sugars are low and then we have one treat.  We have had to watch what kind of snacks we have in the house and try to ensure that the snacks are lower carbs so Kyli can have them.

Sleep has also been changed for me.  I am constantly getting up and checking on her and I panic in the morning if she sleeps late. I usually end up going to check and her and accidentally wake her up.  Night time is the scariest time for me.  Mike and I always make sure she is good to go to bed with healthy sugars and such, but last night we had to give her a larger shot than normal and I was nervous and of course she slept late.  Mike has been so awesome too, he knows that I cannot sleep if I am worrying about her and he got up and checked on her for me.  He will do middle of the night blood checks for me, if I am concerned about her sugars before bed.  A lot of times, Mike comes to bed later so he will just check her before he comes to bed. 

This has not just affected our household, both of our Grandma's who watch Kyli have had a change in caring for her and both of Kyli's Grandma's have had to change how they care for her.  Before Kyli's diagnosis, I had finally cut the apron strings and let Kyli stay the night at Grandma's house and now, I feel like we are back at square one, I am terrified to leave her anywhere.  Kyli has yet to stay the night anywhere.  It is not because I don't trust them, I do and they will take great care of Kyli.  It is because we know how her sugars work best and where she needs to be in order to keep healthy sugars throughout the night.  I will get there and it will be good once we get her to stay, Mike and I could really use a date night. Until then we are doing our best to understand how Kyli works so that we can spread our knowledge with our loved ones.

The saddest idea for me is that Kyli will never get a break, diabetes is 24/7 and she cannot take a break. It will always be there and we will always have to be on our toes. We will have to watch her at home, on vacations, birthdays, school, always.  If we do not, it can cost Kyli her life. She will not get to just eat to eat.  She has to eat for energy, for sugar, for her health. Mind you, while we have to feed her for healthy, she can still have treats as long as we keep her sugars in order and it helps if we plan accordingly.

As I have said before, this will not hold Kyli down, it is only a characteristic of her and not all she is.  She is going to thrive and make an impression on the world!

Our little Mad Scientist

That Stinks. . .

Let me just say this first.  I am not looking for sympathy or a "you poor thing." I just want to try and let people understand what I am experiencing right now.

When Kyli was diagnosed, Mike and I had A LOT going on and we still do.  I came into contact with a lot of people.  When I tried to explain that Kyli was diagnosed, a lot of people said, "That stinks." I was so upset, by the response. Devastated.  Now, I know that people will say that sometimes when they don't know what else to say, but I got that response about 7 out of 10 times, besides my family. 

When people told me that, it felt like people were saying, "That's not so bad." or " That is not a big deal." Let me tell you, this is a HUGE DEAL. Kyli's life has forever been changed, our life has forever been changed.  There are things that Kyli will never get to experience that most kids do.  She will do things that will scare the crap out of me and at some point will end up in the hospital because of her having diabetes.

Did you know that the 2nd leading cause of death is diabetes? See, you body relies on glucose to live.  That means, your brain uses it for fuel.  At night, and this is when it mostly happens, people with diabetes sleep and while they do, their bodies and breaking down the sugar in their bodies.  Sometimes, their sugars get so low that they don't have enough glucose to feed the brain, the brain shuts down and then... well you get the picture.  There are some awesome monitors now, but Kyli is not able to be on a pump yet, so we cannot have this.  Am I scared, yes I am. Luckily, I have an awesome husband and we both ensure that Kyli is at a good sugar level before bed. 

Moving on, if you ever have talked to someone with diabetes, they will tell you that they have at least once, bottomed out and came to at a different location.  Sometimes, their sugar levels drop so fast they cannot see it coming.  Somehow and only sometimes, there brain goes into a survival mode and they get to sugar. It is amazing, but imagine what could happen during that sugar low. 

What makes me sad, Kyli will never have the same experiences as other children. She will not be able to binge on food when she is older like most teenage kids do.  It can mess with her sugars something fierce and take her days to feel better. Kyli will have to eat, even when she is not hungry in order to maintain a healthy sugar level.  She will not be able to eat a bag of popcorn or a bag of skittles for breakfast.  Drinking can kill her, it makes sugar levels drop ridiculously quick.  Although, I will be happy if she never drinks alcohol, just sayin.

When Kyli is physically active, she does not have an option, she has to eat something healthy otherwise she can bottom out.  We have to keep an emergency syringe in her kit (the red container) that needle is long enough to go through clothing.  It is specifically for when she has a sugar low so serious that she is not responding and is unconscious.  Now, I don't know about you, but no parent ever imagines their child having seizures on them, but there is a chance that they may happen if her sugars get low enough.  I also never imagined giving my child shots in order to keep her healthy, but I do anything in order to keep Kyli healthy. 

With that all being said, I do want to say that the medicines they have now are AMAZING even from 20 years ago when I was little and watched my Mom deal with her diabetes.  Kyli is going to live a quality life with some challenges, but she is going to thrive because they have made diabetes manageable.  I cannot wait for Kyli to get a pump, they now have monitors that will alert us if her sugars drop below a certain level. Cannot wait for one of these, seriously. 

I think another reason this hurts so much is because, I have already experienced so much with diabetes with my Mom.  She was blind for about 2yrs when I was in middle school, trust me, I remember this. I remember this all while thinking she had seen me grow up and she needed to get her vision back in order to watch my 2 yr old sister grow up.  Two years ago,her kidney disease became so bad that she had the option of dialysis or a kidney transplant. Luckily, my Aunt, her sister gave her a kidney.  Blessed, yes we are, my Mom's vision is better now than before her eye surgeries and her new kidney is healthier than most peoples kidneys. 

I guess, what I am trying to say is while I don't want anyone to have to live in our shoes...I just want people to try and understand that Mike and I have to be checked into Kyli 24/7.  We might as well have diabetes.  We are responsible for keeping her healthy, safe, and at the healthiest levels possible.  That being said, what 2 year old has ever eaten everything their parents want them to. 

And just so you can have a small idea, her are some of her goodies we have accumulated since her diagnosis.

Change Up

Since Sept 22,2012, Kyli has been on a daily dosage of Lantus.  What started at 1 unit, dwindled down to .5 unit, and the down to .25unit...Well, she kept bottoming out at night, meaning that her range is 80-200 for her sugars, she was in the 60's and 70's.  For her that is low and potentially dangerous.  So, on Thursday they said take her off of it completely.  Luckily for us, Kyli's pancreas is still working some...So she went the weekend shot free.  We figure we will enjoy it as much as we can, while we still can.

Today, I called Kyli's doctor and she said that we are going to try a small dose of Humalog when she eats 30 grams or more of carbs per meal.  While this is a little more intense because it is with meals.  I think it will help A LOT with her sugar lows.  It is going to be harder on us and the Great Grandma's, but we all just want Kyli happy and healthy, so we will do whatever we have to. I just want Kyli to feel good and stop having lows.  They are awful and she shakes so bad.  We are looking forward to finding Kyli's happy numbers and sticking with them.  It just takes some practice and we need it.

Perception Change

 

It is amazing how quickly things change.  This photo was taken one week prior to Kyli being diagnosed with diabetes. Kyli was healthy and carefree.  It is amazing how one word can change your whole world, FOREVER.  I look at Kyli and I see so much.  The one thing I hate seeing is diabetes.  It will NOT stop Kyli from doing anything she wants, but it may slow her down a bit, sometimes.  That angers me so much and I cry for her.  She will never know the luxury of eating anything you want and not worrying about it.  She will be counting carbs her whole life and it won't be because she wants to lose weight or be healthier, it will be because she has to.

 

 

 

One thing that sticks out in my mind is how we view candy. Candy used to be a treat for potty training or just because.  That has for the most part been eliminated and the candy is now a sugar booster.  What makes me so sad is that, usually now when she is eating candy, she is having a bad low and is inhaling it due to necessity rather than enjoying it, she is semi-incoherent. Mike disagrees with me on this, and I am okay with that. Every now and again, Kyli gets a treat just because, but for the most part it is necessity and she is usually shaking and needs help.  While we still are not feeling the full diabetes, what we are getting is enough.

 

I do not want you to feel as though we are feeling sorry for ourselves or Kyli.  I just want you to know our changes and how I feel sometimes.  Kyli is doing amazing still!! She does not cry for sugar checks or shots.  She just does it and moves on.  She is my hero, my inspiration.  She will never know any different than what she gets, becuase she will not remember anything before having diabetes.  While that is great for her, I still know the difference and it makes me sad. Everyday though, I look at her and think, she is going to do amazing things and I want her to show the world that nothing and no one can stop her.

 

 



Almost 1 month with Diabetes

In celebration of surviving our first month with diabetes, our family participated in the Stepout to Walk to Stop Diabetes.  We raised almost $1000, by the way, we are still taking donations for the next month...most of all we got to be around others with similar lifestyles.  It was amazing and we were able to see some amazing products that excite me once Kyli is on a pump.  It was awesome to have family come and support us.  Thank you!!!

Back to the products, my BIGGEST BIGGEST FEAR is Kyli bottoming out at night and we do not know until it is too late.  Well, my fears can be soothed...once she is on a pump. They have a wireless monitor that can be placed in our bedroom that monitors her.  It she drops below a certain number, it will go off and alert us!!! So awesome!! Kyli can be a fast dropper, one minute 200, the next 60.  Scares the junk out of me.  So this will let us all get some better sleep at night. And it will keep her feeling better. 

We have already discovered some of her symptoms for highs and lows...When he has high sugars, dear heavens she is the crankiest child EVER and I do not recognize her.  She just cries, even when I soothe her.  it breaks my heart and I curse diabetes every time.  Her lows are completely different, her eyes become glazed over, she gets cold, lethargic, and can start to shake a bit.  Once you know and try to feed her, it is can be like trying to feed a drunk...messy.  During these times, I just hold her, but she has become defiant and will fight you. ALWAYS when you need her to eat, she will refuse for a bit.  Makes me crazy!!! Overall, I think we are getting a hang of this. But we are blessed because Kyli still has some use from her pancreas so we are not on all the insulins we will be on in a bit. 

The biggest positive, Kyli is still one Spunky Monkey!

On a wonderful side note, Noah is amazing with the adjustments our family has made.  He has been allover making sure her sugars are checked.  He constantly is yelling we need to check her sugars even if we already he, but he didn't see.  I love him so much and as much as they have been fighting, he sure loves her!!

Ain't Nothing Gonna Hold Us Down...

Friday started like any other day for us, get Noah to school and then we have errands to do.  On this day, we had our quarterly appt with the TEDDY (The Environmental Determinants of Diabetes in the Young) study.  Foe more info on this click here. Anyway we went through the usual magic lotion, questions, and blood draw.  Kyli was antsy to wait for her A1C results, we have always waited, it is an option, so we were waiting in the playroom.  Miss Ruth came in and told us it was going to take a little longer because they were waiting for another persons test so that would have to run it again...this struck me as odd because I had been under the impression it was already being tested, but I told her we would wait.  A few minutes later I was asked to go talk with Nurse Michelle, while it was an odd request, I had discussed Noah with her earlier and thought she may have come up with something else to discuss.  To my surprise, I was blindsided with the fact the Kyli's A1C was elevated.  Normally a person A1C is below 5, Kyli's was 7.4 but her sugars were only 120.  I was shocked.  I had been waiting for bad news for 9 months since we had the original antibody in her system, but her last results said the antibodies were less for the first time.  So I was hoping they were leaving her system.  Because her A1C was high, I had to talk to one of the endocrinologist doctors before I left, he instructed me to monitor her sugars for the weekend and that he would be seeing us Monday to discuss the results.  Is it really necessary to say I cried and then I went straight to my Mommy. 

 

 

 

Mom and I had lunch, I discussed my shock with her. Kyli ate great and was her happy spunky self.  I had been instructed to wait 2 hrs after each meal to check her sugars, it was 2 long hrs... So while Kyli was sleeping during her nap, the 2 hr mark hit.  I cleaned her fingers and did her test.  Her sugars rang in at a high 365, they should be under 200.  It was a blessing Noah was at school and Kyli was sleeping, the tears truly hit at this time, there was no denying it, Kyli had become diabetic.  At this point I called our doctor because he never told me what was high enough to cause concern. Kyli's numbers were a concern, so now I was told to watch her numbers until after breakfast and call him in the morning.  Well, things just got worse and her sugars the next morning were 404.  So on Saturday Mike and I took Kyli to the Barbara Davis Center to get a short breakdown on how to give Kyli injections.  Yesterday, Kyli received her first injection on insulin.  Kyli was diagnosed with Type 1 Juvenile Diabetes. She is not even 3 years old.  She is my Spunky Monkey and she will take this is stride, but I have to tell you, I am scared for her future and our future.  I have been through a lot already with my Mom, I am determined to make things go more smoothly with Kyli.

 

 

 

Tomorrow we go back to the Barbara Davis Center in Aurora to meet the team. Let me tell you so far I LOVE THEM!!  This is only Day 3 with Kyli and  her diabetes and I do not truly know what to expect.  My heart hurts so much and if I could I would take this from her in a heartbeat, but at least I know the Barbara Davis Center is already there to support us.