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!!