Appointment details...

Okay so we had our appointment with our endocrinologist yesterday - We were initially planning on typing this up last night but it was a busy night and we spent a while at the park and on a walk - gotta get this little lady some time to "play."

So last time we met with the endocrinologist (12/18/13) we were still doing injections and we discussed a pump as an option. Her A1c was 9% - we were doing awesome with keeping her levels "controlled."

We were put on the pump January 30th - and our average blood sugar since being on the pump was 210 (the last two weeks was 189). Keep in mind her target range is 80-200. We are doing great and we are also worried about what her A1c will be because of the high sugars we had a few weeks ago when she went through her growth spurt...

So the moment we've all been waiting for... her A1c was 8.3%!!! Yay!! we brought it down AND kept her in her target range for her A1c!! Her target is to be below a 9% A1c!! Doctor told us that at her age an A1c of 8.3% is amazing and that we are doing amazing and doing everything we should be. She has grown taller and gained weight since the last visit which means shes getting insulin and her sugars are very well controlled!!!

They always make us feel so good about our care for Elsie - Obviously we take care of her she's our baby and we love her so much but to hear that she is healthy and they have NO suggestions for us and to keep doing what we are doing is amazing!! It makes us feel so good and reassures us...

We always learn new things at these appointments and we truly are thankful to be meeting with such an amazing endocrinologist!! He is awesome at what he does and we never feel rushed! He answers all our questions and we are just so lucky to have the support we have!!

Scheduling our appointments for the summer we meet with endocrinologist again in August and Noreen in July (the 10th) and Noreen made a comment that she will not be celebrating Elsie's birthday with her this year... it was humorous because she was there with us last year in the PICU - We have this gem that we cherish so much and we love to watch over and over again. Elsie even loves it!! The support we experienced while at the hospital on her first birthday was amazing!! we scanned the room real quick in the video to show that there were so many professionals in the room - nurses, doctors, volunteers etc!! She had the BEST first birthday (spent in a pediatric intensive care unit) a girl could have!!

We've already started to plan her second birthday party - usually second birthdays aren't as extravagant as first birthdays but we are making this one as special as her first. This is her FIRST birthday as a healthy little girl and her first birthday not in a hospital and we are MORE than excited to celebrate that with all who want to!!!

Thank you from the bottom of our hearts for the support you all give us and thank you for keeping up with us on our adventures with Elsie & Diabetes...

Take Care,
McKenzie, Sarah & Elsie

Update

We just wanted to take a moment and share that Elsie has been doing amazing since the insulin changes that we have made a few days ago. We are very excited about how much better shes been acting with more controlled sugars.

She is adapting well to the babysitting kids - we had a friend living with us for close to a month and she has since moved out and it was stressful for all having less room in the house. Elsie was much more cranky having more people living with us. It was a lot for a toddler to handle and stress can mess with her sugars too. Shes been eating better and more at a time - less snacking more mealing - for lack of a better word.

She officially LOVES Frozen the movie and loves the music to the movie. We have an appointment April 9th with our endocrinologist to discuss things. I think we've been doing well with the pump and are MORE than thankful for the DEXCOM. We actually found ourselves asking how we ever did diabetes without the DEXCOM before?

We see this sweet face and to us this face is perfection...what makes things emotional is thinking that ANYTHING could be wrong with this sweet beautiful girl? Looking at her, watching her, no one would ever guess she has a life long illness to deal with everyday?

We've decided that we are going to get healthier for Elsie. We are going to be cooking dinner at home every night and not eating out or bad foods as often - trying for never but we can't be perfect - We are going to walk and get moving physically to keep our bodies on the right path to being more healthy. This is our motivation;
     When we feel like NOT doing something healthy we are going to ask ourselves if Elsie gets to stop being diabetic because she's not feeling like it today?...NOPE so therefore there is NO excuse good enough to not doing something good for ourselves...

Take Care,
McKenzie, Sarah, & Elsie

Changes...

Changes are always happening in this house!! We have changed insulin to carb ratios recently! Moms have had a few roller-coaster days with fighting insulin and avoiding low blood sugars. We handled them for the most part without having to call our diabetic educator - but after three days in a row... we decided it was time to touch base. Sarah called a friend who has Type 1 - for some support and it apparently turned into a shoulder to cry on...

Diabetes care with a toddler is a new learning experience everyday. We have to watch her behaviors to tell us about her sugars more than anything. We unfortunately cannot ask her how she feels - we can't get a straight answer from her at the current time. She has quite the vocabulary, but shes 21 months old - so recognizing that her blood sugar is high or low just isn't something that she is able to do. We are proud of all she can tell us however and we are understanding her body language pretty good.

At this point in time we are tweaking her insulin levels based on her sugars and our main goal to avoid severe lows ( which are like 40 and under) we've had her at 66 at the lowest since shes been on this pump - so we are succeeding!!!

We have been looking at her numbers and her average blood sugar since the pump has been 210. Our goal sugars are supposed to be between 80 and 200. So we are BARELY above our goal range!! Which is awesome!! We are doing awesome and hearing our diabetic educator reassure us of that is so much more amazing than I can even describe. We like to KNOW we are doing good things for Elsie - and we were told to look at the QUALITY OF LIFE  - not necessarily the numbers. Looking at it that way were are able to say that Elsie no longer wakes up in the middle of the night thirsty because her blood sugar is high. She wakes up if she ends up uncovered or her binky falls out of her mouth! She sleeps through the night most nights than not. We've NEVER been able to say that since she was born.

It hasn't been easy to deal with a child ( a toddler ) with diabetes but it is thankfully a manageable disease! We were able to take our sick child into a hospital and leave with a child on their way to better health. She will always have this disease ( unless a cure is found ) and we will always be thankful that medical science was able to create a hormone that her body is no longer able to make. With that we are able to give her this hormone and fix any imbalance in her body. We are LUCKY that were didn't get a diagnosis of cancer or anything that we couldn't make her feel better for the rest of her life. She has an amazing prognosis and we couldn't be more thankful for that!

She is such an amazing girl and smiles through the worst of days - and she shows such a strength that we could only be so lucky to have. She is such a brave little girl - and she is the sunshine of our lives and she is the reason we smile each and every day. SO thankful for a healthy, beautiful, and strong little girl!!

Take Care,
Sarah, McKenzie & Elsie

Getting used to this thing....

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!

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!)

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!

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