Okay so we have been on the Dexcom over a week now - we had a successful site change on Monday. It was surprisingly easy! Way to go us! We did reach out to someone via the Internet (so thankful there are so many people willing to offer support) to someone we've never met but has been very willing to provide support when we needed it. She too, has the Dexcom CGMS and told us it takes some getting used to at first. BOY was she right! We had been so focused on the numbers and no the patterns or trends as they call it. I see 300's and panic - which at her age will not harm her (as long as she's well hydrated and getting adequate insulin). It is normal for BS to go up before it comes down. Insulin is a great thing but a non-diabetic makes insulin before food has even entered their body. Elsie doesn't get her insulin until she's done eating. Which could potentially be 45 minutes after she started eating and by then her sugar has already started to rise. We are getting more comfortable with the numbers and not focusing so much on them. We had to tweak her basal rate and correction ratio here in the last couple days. Just now starting to see a change in blood sugar amounts - so feeling more confident. This same individual explained to us that changing rates etc too quickly can make her feel really crappy - and explained that lows feel SO much worse than the highs. Which made us feel better, WAY better!
Elsie is adapting very good - she's even starting to show signs for potty training to begin. She's been grabbing her diaper and saying "Eww" after she pees of poops in it - but she fights to sit on the potty - We aren't forcing anything so we'll keep trying until she's ready but I have a feeling it will be SOON!! YAY!!
This was not much of an update but things are busy and we only get a few minutes at a time to write up a quick blog!! Thanks for all the support!!
Take Care,
Sarah, McKenzie & Elsie!
Friday, February 28, 2014
Tuesday, February 18, 2014
Today is the day...
Today marks the day that we will be getting acclimated with the DEXCOM CGMS. Super exciting day in the Hunt household. We have fought for the approval for this. Our Doctor and Nurse have written reccommendation letters to insurance to explain why this is a necesity. We fought and we won! YAY! So over the moon excited this will open so many doors for us.
We are however scared about putting another infusion site on poor Elsie's little bum. She doesn't seem to flail at all in terms of the pump infusion site. She wimpers for a minute. We're sure its little worse than a finger poke but its only for a slipt second. She just never stops moving forward. We feel like we could learn something from her young spry ways. She was in ketoacidosis in June/July and was still taking steps on her own still trying SO hard to meet milestones she just kept chugging along. When we look back at how sick she really was its just crazy. Her first steps by herself were on June 12, 2013. She must have continued to get more sick after that because she never took steps after that. She mostly laid on the floor didn't even crawl much. She just sat in a chair on a lap, or laid on the floor and sometimes fell asleep. (this from a girl who can't sleep anywhere but her own bed)
We got home from the hospital and she was literally walking around as if she had been walking for months. It was so exciting for us - she even tried to walk in the hospital but was hooked up to so many things she really couldn't do that all so much.
But her resilience for life and the obstacles thrown at her is unbeleivable. Children in general have a non-skewed view on life. They haven't felt depression they are not capable of that - they fight so hard because they don't know how to give up. They are full of positive energy because the world hasn't yet taught them to be negative about things. If we could live in a world where this was true to adults and children alike; there would be no reason for tears to stream down our faces when Elsie's sugar gets out of control. Or when she has a low sugar and the panic and fear that flows through our veins like ice cold water.
Its amazing being Elsie's parents, but it is one of the scariest things we've ever done. We have cried and laughed and been so scared for our daughter more in the last 7 months than ever in her entire life. Diabetes is NOT an easy disease - its manageable yes absolutely but with managing it comes some crazy finessing. Because of how young she is the Doctors let insulin do the talking. We try ratios and see if they cause a low or a high and adjust the ratio from that point. THEN she grows and it all changes from there. It will constantly change like this until shes about 20 years old. So basically we're going to stress for the next almost 18 years of our lives - and we will do so with a smile on our face. Our fighter will be smiling and so will we, this is the adventures we take with Elsie and her Diabetes.
Take Care,
Sarah, McKenzie, & Elsie
(I'm sure there are spelling errors but it told me there were not - please make due I am NOT a great speller!)
We are however scared about putting another infusion site on poor Elsie's little bum. She doesn't seem to flail at all in terms of the pump infusion site. She wimpers for a minute. We're sure its little worse than a finger poke but its only for a slipt second. She just never stops moving forward. We feel like we could learn something from her young spry ways. She was in ketoacidosis in June/July and was still taking steps on her own still trying SO hard to meet milestones she just kept chugging along. When we look back at how sick she really was its just crazy. Her first steps by herself were on June 12, 2013. She must have continued to get more sick after that because she never took steps after that. She mostly laid on the floor didn't even crawl much. She just sat in a chair on a lap, or laid on the floor and sometimes fell asleep. (this from a girl who can't sleep anywhere but her own bed)
We got home from the hospital and she was literally walking around as if she had been walking for months. It was so exciting for us - she even tried to walk in the hospital but was hooked up to so many things she really couldn't do that all so much.
But her resilience for life and the obstacles thrown at her is unbeleivable. Children in general have a non-skewed view on life. They haven't felt depression they are not capable of that - they fight so hard because they don't know how to give up. They are full of positive energy because the world hasn't yet taught them to be negative about things. If we could live in a world where this was true to adults and children alike; there would be no reason for tears to stream down our faces when Elsie's sugar gets out of control. Or when she has a low sugar and the panic and fear that flows through our veins like ice cold water.
Its amazing being Elsie's parents, but it is one of the scariest things we've ever done. We have cried and laughed and been so scared for our daughter more in the last 7 months than ever in her entire life. Diabetes is NOT an easy disease - its manageable yes absolutely but with managing it comes some crazy finessing. Because of how young she is the Doctors let insulin do the talking. We try ratios and see if they cause a low or a high and adjust the ratio from that point. THEN she grows and it all changes from there. It will constantly change like this until shes about 20 years old. So basically we're going to stress for the next almost 18 years of our lives - and we will do so with a smile on our face. Our fighter will be smiling and so will we, this is the adventures we take with Elsie and her Diabetes.
Take Care,
Sarah, McKenzie, & Elsie
(I'm sure there are spelling errors but it told me there were not - please make due I am NOT a great speller!)
Monday, February 10, 2014
The time has come...
So we received the Dexcom continuous glucose monitoring system today! So excited for February 18th when we get to learn how to work the darn thing! We will be able to use that reading as her blood sugar and only have to calibrate the device three or four times a day. So we will only have to poke her with the lancet to check blood sugar a few times a day. At this point we are checking her at least 6 times a day if not more than that!
We were able to get rid of the milk at night routine. We thought that we would have more trouble than we did. She fought Sarah only for a couple nights. We started this training on a Friday night and by Monday she was able to take a sippy cup of water and/or her binky and go back to bed. She still gets up 1-2 times a night but does not beg for milk anymore. She usually wakes up when she cannot find her binky. She is quite attached to that. We have a feeling that we will be blogging about taking this binky away at some point in the future.
This insulin pump business is going fairly good. We've had a few highs and only one or two lows. We have been doing fairly well. She may be growing now and needed a different insulin to carb ratio or a different basal rate for her insulin.
OH MY! We went to Friday's for dinner the other day and Elsie had to poop while we were eating of course and she was sitting in the highchair so of course its an awkward position and forces the poop up her back etc. So Sarah went to change her and noticed that it was all up her back and everything (love blowout poops by the way) and Sarah had to change her diaper and change her infusion site for her insulin pump because there was poop in it. It was a disaster! Our waitress thought that Sarah and Elsie had ditched McKenzie and Sarah had to deal with Elsie running around the Friday's bathroom screaming and playing around - it was QUITE the experience...good thing we are in need of the site change practice and good thing that we get enough supplies each month!
We are so lucky and so blessed for this life and could not be happier! Amma came down to visit this weekend and it was SO nice to have her here with us. She is such a huge support in our life. We are so thankful for her. She has been there for everything and we couldn't have gotten through some of this without her I don't think. She is such a brilliant lady!!
Take Care all its Olympics time!
Sarah, McKenzie, & Elsie!
We were able to get rid of the milk at night routine. We thought that we would have more trouble than we did. She fought Sarah only for a couple nights. We started this training on a Friday night and by Monday she was able to take a sippy cup of water and/or her binky and go back to bed. She still gets up 1-2 times a night but does not beg for milk anymore. She usually wakes up when she cannot find her binky. She is quite attached to that. We have a feeling that we will be blogging about taking this binky away at some point in the future.
This insulin pump business is going fairly good. We've had a few highs and only one or two lows. We have been doing fairly well. She may be growing now and needed a different insulin to carb ratio or a different basal rate for her insulin.
OH MY! We went to Friday's for dinner the other day and Elsie had to poop while we were eating of course and she was sitting in the highchair so of course its an awkward position and forces the poop up her back etc. So Sarah went to change her and noticed that it was all up her back and everything (love blowout poops by the way) and Sarah had to change her diaper and change her infusion site for her insulin pump because there was poop in it. It was a disaster! Our waitress thought that Sarah and Elsie had ditched McKenzie and Sarah had to deal with Elsie running around the Friday's bathroom screaming and playing around - it was QUITE the experience...good thing we are in need of the site change practice and good thing that we get enough supplies each month!
We are so lucky and so blessed for this life and could not be happier! Amma came down to visit this weekend and it was SO nice to have her here with us. She is such a huge support in our life. We are so thankful for her. She has been there for everything and we couldn't have gotten through some of this without her I don't think. She is such a brilliant lady!!
Take Care all its Olympics time!
Sarah, McKenzie, & Elsie!
Thursday, February 6, 2014
Our News Is Good News!! Woot Woot!!!
We got GREAT news yesterday! We've been approved for thw DEXCON continuous glucose monitoring system (CGMS)! We've had our fingers crossed for months waiting on this decision! This device will check her blood sugar every few seconds and wireless communicate that blood sugar reading to a handheld device that will be kept in our pocket or on our hip! This way we'll be able to see her blood sugars and the trends she develops and we'll be able to regulate these sugars and keep track of her ups and downs more efficiently!
This is what the handheld device will look like! We ordered the pink one - only because I didn't like the other colors as much as I liked pink!
At this point in our pumping journey we are checking blood sugar every four hours throughout the night and before every meal during the day. Also if shes cranky we check her because she cannot verbalize when she is high or low to us just yet.
Everyday is still a struggle. We both feel differently in terms on the effect of insulin on Elsie and it becomes an argument at times. We only want the best for Elsie and sometimes our desire for her wellbeing can become an argument...we always come to an agreement and some days we agree all day. Its terrifying to have a child with diabetes. As natural as insulin is - as our bodies make it naturally - the type we are putting into Elsie is not made in her body so its in a sense foreign to her and sometimes shes more sensitive to it and sometimes she resists it. So we'll have days where her sugars are low and we're trying desperately to keep them up into an in target level and some days where shes high all day no matter how accurately we correct for her carb intake and blood sugars.
So as I said every day is an adventure of one sort or another! Its a rollercoaster of sorts but we are the perfect pair to be on this rollercoaster together! We compliment each others imperfections and when one gets lackadaisical the other keeps with the program and it all works out every day!! We are so blessed to have a happy healthy adaptable and adorable little Elsie. I cannot imagine life without her and cannot imagine this adventure without diabetes -
Elsie is beautiful and a type 1 diabetic who is rocking the socks off this insulin pump business!! Even our drug rep tells me to say hi to Elsie for her every time we talk - she has touched so many lives and continues to do so each and every day! So jump on the adventure its quite a good time!!
Take care,
Sarah, McKenzie & Elsie
This is what the handheld device will look like! We ordered the pink one - only because I didn't like the other colors as much as I liked pink!
At this point in our pumping journey we are checking blood sugar every four hours throughout the night and before every meal during the day. Also if shes cranky we check her because she cannot verbalize when she is high or low to us just yet.
Everyday is still a struggle. We both feel differently in terms on the effect of insulin on Elsie and it becomes an argument at times. We only want the best for Elsie and sometimes our desire for her wellbeing can become an argument...we always come to an agreement and some days we agree all day. Its terrifying to have a child with diabetes. As natural as insulin is - as our bodies make it naturally - the type we are putting into Elsie is not made in her body so its in a sense foreign to her and sometimes shes more sensitive to it and sometimes she resists it. So we'll have days where her sugars are low and we're trying desperately to keep them up into an in target level and some days where shes high all day no matter how accurately we correct for her carb intake and blood sugars.
So as I said every day is an adventure of one sort or another! Its a rollercoaster of sorts but we are the perfect pair to be on this rollercoaster together! We compliment each others imperfections and when one gets lackadaisical the other keeps with the program and it all works out every day!! We are so blessed to have a happy healthy adaptable and adorable little Elsie. I cannot imagine life without her and cannot imagine this adventure without diabetes -
Elsie is beautiful and a type 1 diabetic who is rocking the socks off this insulin pump business!! Even our drug rep tells me to say hi to Elsie for her every time we talk - she has touched so many lives and continues to do so each and every day! So jump on the adventure its quite a good time!!
Take care,
Sarah, McKenzie & Elsie
Tuesday, February 4, 2014
In the months following diagnosis...
So we came home July 14th and it was a great day. We were terrified to be trusted with Elsie's life without a nurse or doctor 10 feet away. We had a cellphone number to contact our diabetic educator on 7 days a week 7am-7pm. We used it pretty good for the first weeks we were on our own. We checked blood sugars every two hours it felt like. Elsie entered, as many newly diagnosed diabetics do, a "honeymoon" stage.
Honeymoon in diabetic terms is defined as when a newly diagnosed diabetic gets quick blood sugar control and their pancreas seems to perk up and it actually produces a fairly significant amount of insulin and fast acting insulin is not needed all the time. We stayed in this perpetual honeymoon for nearly 4 months.
Elsie was placed on an insulin regimen of a daily dose of Lantus which is a long acting insulin and it gave a minute amount of insulin slowly throughout a 22-24 hour period. Then she was given fast acting insulin, Novolog, with meals to cover for the carbs she was ingesting. During our honeymoon stage we didn't give much Novolog and were able to control her blood sugars with her diet mainly.
We partook in a Juvenile Diabetic Research Foundation Walk for a Cure on September 15, 2013. We had a great turnout! All her biggest supporters were there with us. Sarah handmade shirts for everyone that read "Team Elsie Moooves for a Cure" on the front and their name on the back. It had black spots ironed on to look like dairy cows. We walked 2 miles and it was great! Can't wait for this year's walk!
Elsie slowly came out of honeymoon stage around Halloween time. So we comfortably gave insulin for some candy she ate on Halloween. We didn't trick or treat this year but next year we will for sure!
Elsie has continued to thrive and grow and develop as expected and is so advanced in many aspects. We are so proud of our little lady. January 12, 2014 was our 6 month anniversary of diagnosis and we cannot imagine where we'd be without Noreen teaching us all the things we know and our family and friends being there to support us.
Elsie started her insulin pump yesterday February 3, 2014. She has been doing amazing with it and we are excited to jump into this new adventure with Elsie and her diabetes! We'll follow up with more on the pump as we learn and get used to this.
Take Care,
Sarah, McKenzie, & Elsie
Monday, February 3, 2014
Welcome to our life! (Intro)
1:20am on July 13, 2012, her cries brought tears to our eyes! Our beautiful Elsie Stelle Hunt was born 7lbs 13.6oz 20inches long.
Our lives forever changed in that moment. Little did we know the whirlwind the next 365 days would be.
Elsie developed beautifully! She made all milestones on time and some were early! She rolled and crawled and cooed and boy did she grow! She was a healthy exclusively breastfed baby. She spent many hours with family and friends! She was showed and surrounded by love and our family was fully supported by everyone we knew! McKenzie stayed home and took care of sweet Elsie.
Sarah worked at Oaklawn Psychiatric Center and later moved on to work at IU Health Goshen Hospital. We moved in March 2013 to a 2 bedroom apartment as our small 1 bedroom home was no longer providing sufficient room for our family. We loved the new apartment. Hated sharing walls but Elsie was continuing to thrive.
Elsie came down with a virus around the middle to end of May 2013, her first real sickness. She kept getting irritable and cranky and not liking her usual activities. A round of antibiotics didn't do much to help.
Sarah lost her job at the hospital unexpectedly, she worked part time at a bakery - but it wasn't enough. McKenzie found a job at Keystone RV and everything changed for this family of three! McKenzie went from stay at home mom of 11 months, to sole provider for the family. Sarah went from working full-time and solely supporting this family for the last 7 years to stay at home mom and wife. This transition was terrifying for both McKenzie and Sarah.
Elsie seemed to be affected by the change as well. Elsie became more and more irritable, her energy level decreased tremendously, and her interest in usual things changed. Sarah started to think Elsie didn't like Sarah being home with her. Then Elsie started getting sick, vomiting, on a nightly basis. We were so worried. We tried to avoid unnecessary E.R. tests and made several visits to our family doctor. All symptoms pointed to teething, but that diagnosis didn't suffice for us.
Something was wrong and we knew. Doctor said keep an eye on vomiting and if she vomited anything similar to seaweed to take her to E.R. He explained a potential bowel obstruction. She then vomited green that very evening and IU Health Goshen Hospital emergency room here we came. The date was July 11, 2013 around 8:30pm. We got to the E.R. and blood and urine were taken from our sweet sick baby. She had no energy to fight the technicians and just laid there! 
Then the nurse came in to start an IV he mentioned her sugar was high and they wanted to flush it out. Sarah asked how high (she was a nurse aide and took some nursing school courses and knew a thing or two about blood sugar) he said it was 457! Sarah about fell off the hospital bed!
Keep in mind NORMAL blood sugar is between 70-120!
We asked why it would be so high? And the nurse said the doctor would be in to talk to us about it. But that he thinks she has diabetes. Never in our wildest dreams had we ever heard someone being diagnosed with diabetes before a year of age. Of course we NEVER thought this would happen to us!! We cried and Sarah made sure Amma was on her way down. This was all just before midnight on July 11th. Grandpa Danny came to the E.R. to give support.
We contacted our doctor and explained what was going on. He said he'd visit the next day at the children's hospital. We were transferred to Memorial Children's Hospital in South Bend shortly after midnight. Sarah rode the ambulance with Elsie and McKenzie met up with Amma at the apartment and drove up shortly after and met at the hospital.
We spent all of July 12th, July 13th (Elsie's first birthday) and most of July 14th in the pediatric ICU. Elsie fought an amazing fight! She smiled and was making nurses laugh! She was such a trooper! So many family visited in between naps - Elsie slept quite a bit from all the commotion.
Elsie developed beautifully! She made all milestones on time and some were early! She rolled and crawled and cooed and boy did she grow! She was a healthy exclusively breastfed baby. She spent many hours with family and friends! She was showed and surrounded by love and our family was fully supported by everyone we knew! McKenzie stayed home and took care of sweet Elsie.
Sarah worked at Oaklawn Psychiatric Center and later moved on to work at IU Health Goshen Hospital. We moved in March 2013 to a 2 bedroom apartment as our small 1 bedroom home was no longer providing sufficient room for our family. We loved the new apartment. Hated sharing walls but Elsie was continuing to thrive.
Elsie came down with a virus around the middle to end of May 2013, her first real sickness. She kept getting irritable and cranky and not liking her usual activities. A round of antibiotics didn't do much to help.
Sarah lost her job at the hospital unexpectedly, she worked part time at a bakery - but it wasn't enough. McKenzie found a job at Keystone RV and everything changed for this family of three! McKenzie went from stay at home mom of 11 months, to sole provider for the family. Sarah went from working full-time and solely supporting this family for the last 7 years to stay at home mom and wife. This transition was terrifying for both McKenzie and Sarah.
Elsie seemed to be affected by the change as well. Elsie became more and more irritable, her energy level decreased tremendously, and her interest in usual things changed. Sarah started to think Elsie didn't like Sarah being home with her. Then Elsie started getting sick, vomiting, on a nightly basis. We were so worried. We tried to avoid unnecessary E.R. tests and made several visits to our family doctor. All symptoms pointed to teething, but that diagnosis didn't suffice for us.
Then the nurse came in to start an IV he mentioned her sugar was high and they wanted to flush it out. Sarah asked how high (she was a nurse aide and took some nursing school courses and knew a thing or two about blood sugar) he said it was 457! Sarah about fell off the hospital bed!
Keep in mind NORMAL blood sugar is between 70-120!
We asked why it would be so high? And the nurse said the doctor would be in to talk to us about it. But that he thinks she has diabetes. Never in our wildest dreams had we ever heard someone being diagnosed with diabetes before a year of age. Of course we NEVER thought this would happen to us!! We cried and Sarah made sure Amma was on her way down. This was all just before midnight on July 11th. Grandpa Danny came to the E.R. to give support.
We contacted our doctor and explained what was going on. He said he'd visit the next day at the children's hospital. We were transferred to Memorial Children's Hospital in South Bend shortly after midnight. Sarah rode the ambulance with Elsie and McKenzie met up with Amma at the apartment and drove up shortly after and met at the hospital.
We spent all of July 12th, July 13th (Elsie's first birthday) and most of July 14th in the pediatric ICU. Elsie fought an amazing fight! She smiled and was making nurses laugh! She was such a trooper! So many family visited in between naps - Elsie slept quite a bit from all the commotion.
We made it home and had to figure out this diabetes situation out for ourselves. We had an excellent diabetes educator Noreen, without her we couldn't be where we today.
Elsie was diagnosed 6 months ago, and now we are on an insulin pump and doing great! I'll be sharing some favorite and not so favorite moments in this blog. We are a family striving to fight against diabetes and end in a cure for our beautiful little fighter! Shes amazing and everyday is a new adventure with Elsie & diabetes!!
Take Care,
Sarah, McKenzie, & Elsie
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