How to act...

We are writing this to first let off a little frustration and also to help people help us. This is not easy to say or ask and we know everyone supports and loves us and will understand where we are coming from... So thank you in advance...

I think that there are a lot of people out there who seem to think that since Elsie is doing so well and is a healthy happy baby girl! People seem to think they can offer Elsie food (of any variety) without asking if its okay to do so first. Yes it may be true that a tiny bite of something isn't going to affect her sugar  - BUT when that tiny bite is a spoonful of chocolate or something that is ALL sugar even the smallest bite will affect her. There are certain things that she eats that take longer to affect sugar but almost EVERYTHING has carbs and we have to account for all the carbs she eats in order to keep her glucose levels as well maintained as we do.

I guess what we are saying is that as I hope you would ANY child you come in contact with, ASK their parents before feeding them. You never know what allergies kids may have or if they have to count carbs too!! I would never give a child food without making sure it was okay with mom/dad first. I hope our friends and family can do the same.

The unfortunate thing with diabetes is that we HAVE to measure everything Elsie eats - we carry measuring cups in our diaper bag for goodness sakes!! For the record there is NOTHING Elsie cannot eat, but we HAVE to know how many carbs are in whatever it is that she eats. This is honestly the most stressful part of diabetes and being a parent of one. We have become fairly good at memorizing the carb count in foods that Elsie frequently eats and so a lot of times if someone asks us if she can have something 9 times out of 10 we'll know how much of that is how many carbs etc...

There are also times as mothers that we generally do NOT want Elsie to eat things. At 8:00pm or later SUGAR of any form is not something we are OK with her eating, its bedtime and its not necessary. I understand that people like to treat Elsie and I want nothing more than for you to do so! BUT ask first is all we are saying.

This is NO way is meant to anyone in particular - this has happened on SO many occasions that we felt it was necessary to say something HOPING all those important to us read this and will take note.

This disease IS serious. I know that many may feel that its NOT life threatening and its MANAGEABLE, which it is. But counting carbs and giving insulin is how we are managing this. its not an easy thing and it takes a lot of trial and error and all those errors can get scary. If we ever miscalculate carbs and cover for too many we can cause Elsie to get a very low sugar. Elsie is TOO young to tell us that her sugar is dropping fast (someday she'll be able to feel that change and notify us herself) now we have to HOPE that this DEXCOM will alert us when she's falling fast and so far we've been able to.

Our job as her parents right now is to avoid lows and avoid ketones. The lows we are avoiding would be a low where Elsie lost consciousness and/or had a seizure... We NEVER want to experience this and hopefully never will!! And ketones are a result of high blood sugar without adequate insulin coverage - this is what caused her to be in Diabetic Ketoacidosis(DKA). This is how she got diagnosed. From any diabetic we've ever talked to DKA is the "worst feeling in the world" and we are thankful that Elsie will NOT remember this feeling and we are hopeful she never will feel it again!!

Thank you for listening and I hope this gives you all a little more insight into this awful disease that we are fighting on a daily basis...

Take care,
McKenzie, Sarah & Elsie

Check-Up

We had an awesome birthday party for Elsie on Saturday July 12th!! It was a little rainy at the beginning of the party (right when people were showing up) but we had a clearing and a great turnout many loved ones and friends came and celebrated with Elsie and us!! It was beyond amazing!! She was so busy with playing that we had to open her presents for her she opened a few but then got down and said that she wanted to play.  We could not have been more impressed with the outpouring of love that we saw that day!! July 12th will always have a special place in our hearts - it was the day we went in to be induced to have Elsie and it was the day we were diagnosed with Type 1 Diabetes. I say we were diagnosed because at this point it is our life. Right now our family has diabetes - at some point in Elsie's life it will transfer from us to her - and I fear that day that we lose control of diabetes but we trust that Elsie will do her best with it.

So we had an appointment with her doctor (family doctor) on July 14th for a 2 year check up. She weighed 30.1lbs and was 33in tall!! Such a big girl!! Her weight dropped from the 95+ percentile to just above the 75th percentile. It was a long winter folks and we have been moving since the weather got nice!! Elsie absolutely loves to play outside and is full of joy and energy  when she does. We are so thankful for the happy healthy baby (not so much a baby anymore) we have!!

JDRF walk is coming up and we've almost made 50% of our goal!! We are doing awesome!! the more money we raise the more money gets donated to finding a cure!!

Tonight when we laid Elsie down for bed she usually says goodnight to every object she can think of so it keeps her from going to bed to quickly... WELL tonight she said goodnight to her Dexcom and I thought it was the absolute cutest thing ever!! She is well aware of what this contraption does and she is so smart and kind to want to tell it good night!!! Mom brag moment over!! Good night all!!

Take care!
McKenzie, Sarah & Elsie!!

Pump Problems...

Woke up this morning like any normal day. Elsie's pump alarms every 3 days for us to change the site and put new insulin in the cartridge etc. SO at 9am this morning it alarmed and we covered for breakfast and unhooked the pump and began the loading process. Well the pump itself keeps a reservoir of insulin considered "unusable insulin" and that is so that the pump never actually gets empty and you never have air going through the tubing and into her skin. Well this time the pump kept telling me that there wasn't at least 50 units of insulin left in the pump after everything... SO long story short seems there was a problem with the pump itself and they are overnighting a new pump to us to tomorrow morning.

In the meantime we had to do injections today, we were apprehensive about the injections and didn't know how well she'd take to them. Well she didn't even seem to care!! She is always such a go with the flow and do whatever it takes. We also think she knows that insulin makes her feel better now so she accepts it!!

We luckily had an appointment with our Diabetic Educator, Noreen, today. So it worked out well to kind of go over things and troubleshoot things. She gave us some extra insulin vials to keep in the fridge as back-up.

We did an A1c check today too and it was 7.8%!! (meaning her average blood sugar for the last 3 months was around 184) Which is absolutely amazing!! Noreen explained that with being as young as she is - this number would actually be too low. But because we have the Dexcom and they can see that she hasn't had a low under 80 in a month!! So they know that the 7.8% A1c is not because of too many lows but instead because of overly anal mothers that are amazingly managing her diabetes!! We are so happy!!

Noreen also mentioned to us that Tandem (Elsie's pump company) had their national conference a while back and were discussing the regions cases and success etc - well Elsie seems to be the VERY youngest person to be using the Tandem T-Slim insulin pump!! The representatives at Tandem were SO impressed at how well she is doing on it etc. Our Diabetic Educator wants to do a case study on Elsie because of how well she is doing and growing etc!!

Our main goal day to day is to keep Elsie's sugars at a manageable level and to avoid serious lows (unconscious lows) that can harm brain development. We are definitely doing that and doing that very well!! The Dexcom and the pump have allowed us to be more comfortable giving Elsie insulin to keep sugars lower knowing we can catch it whens shes starting to drop low - and fix it before it happens!! Noreen said a HUGE goal is to improve the quality of life not only for Elsie but for the whole family!! These technological advances have definitely helped us sleep better knowing that Elsie is not dropping too low at night and potentially unconscious etc!!

Thank you for keeping up with us!! We love the support we get from everyone!! This is such an awesome way for us to let everyone know what we are up to...what we are struggling with and what we are succeeding with!!

Take care!!
McKenzie, Sarah & Elsie

Pictures, Potty Training, Etsy...

Well we got her two year pictures on Sunday and we were very anxious at the beginning because she is so shy of strangers. There was one person in particular who helped warm her up, and made her laugh. We've been looking at the difference in her from last year to this year. We couldn't get her to smile at all last year for her pictures - we tried!! But hind sight here she was in diabetic ketoacidosis and was ridiculously sick and we didn't even know. It makes us so sad and feel so awful that we didn't notice the signs earlier - We know that we can't go back and change things - but we just feel so bad that she got so sick!!

Last year...

 

 

This Year...

 



We were sleep training when she was sick - we used the cry it out method. We let her cry for 10 minutes and then go lay her down and she eventually would fall asleep. Well when we found out she was sick we felt immense guilt for letting her cry - because she was trying to tell us she didn't feel good and was sick! So needless to say we do not let her cry herself to sleep - and thankfully she is very good and going to bed. She asks to bring a baby or her dolls or a book to bed with her almost every night. She is just amazing! While the cry it out method did work - and we understand that it works for many people the fear of her crying because she's low or crying because she's high and has gotten sick or peed through her diaper - is too much to not answer her cries.

We are hoping to try to potty train here soon. This will be quite the task since her sugars will play a key role in potty training... keeping her as regulated and as in target as possible is going to be REALLY important - however sometimes her sugars go high for no reason - nothing can be explained and sometimes they do great without explanation. So we will do out best and we will continue to try to potty train. If she's not ready then we will try in a few months but we would LOVE to be out of diapers!!

Been thinking of opening up an Etsy.com shop - Sarah would crochet blankets and washcloths and sell them to help our monthly expenses. Living with one income is very difficult (as many know) and driving to doctors appointments etc. adds to the expenses and stress. Any thoughts on whether or not it would be worth it would be awesome!! We'll keep trucking along and we are doing great and loving life every minute by minute!!

Take Care,
McKenzie, Sarah & Elsie

Dentist...

We were incredibly nervous yesterday when we went to the dentist. We walked in there and saw two other small kids leaving and they were happy so we were more confident after that. They called us back and were in a double room a teenage boy was in there finishing up his visit. He was talking to Elsie and she wasn't scared at all!! The hygienist asked if she'd like to sit on one of our laps or she could sit in the big chair. Elsie said she wanted to sit in the chair! So we put her in it and she opened up and let the hygienist get right in there. There was a small spot of tarter build up on one tooth, which in the area it was in is common for anyone to get build up, but Elsie actually let her use the metal scrapper and got it off really quick. She was so amazing... opening her mouth so wide for them! She has 16 teeth - 8 on top and 8 on bottom. She has her two year molars to come in still (so YAY we still have some teething to do!) But everything looks great as far as the jaw structure and her teeth etc.! We are so happy and excited!! Sarah always loved going to the dentist so hopefully Elsie will like it too!! These are some pictures of her trip to the dentist!! She is seriously the most amazing person in the world!! We couldn't be more proud!!!

 

Made a call to Noreen (our diabetic Educator) today. We have been having some low blood sugars at bedtime. We aren't sure where they are coming from. We have excellent sugar levels all day and then at night she goes down to 100 or lower before bed. Mind you she still has insulin going throughout the night and going to bed at 100 is sure to drop her low at night and we hate to give juice or milk at night - so we usually have her over 150 when she goes to bed. WELL last night she was 184 before her night time milk. Her 8oz of milk at bedtime is 12g of carbs and we usually have to cover half or all of it depending on her sugar level. Well last night we decided to NOT cover any of it and see how her sugar was in the morning. She woke up this morning at 88!! After no coverage for 12g of carbs!!  Well Noreen said that when she plays outside she could continue to burn carbs etc. for 12-36 hours after playing. So we are going to NOT cover bedtime carbs for a while and see how things go.  Sarah's mom is watching Elsie for the night while we go to Grand Rapids Gay Pride - we haven't been away from Elsie overnight since March of 2013!! Sarah's mom has watched her for a couple hours here and there - but nothing long term - and we trust her completely to do it BUT its always scary!! So we wanted to have a good grasp on things before this weekend.

 

This is a picture of her average hourly blood sugars  -  the green shaded area is our target range and we're ALMOST ALWAYS in that range which is great!!! Proud Mommies over here!!

 

 

 

So we're still moving in the right direction...Elsie is growing like a weed!! She's meeting and exceeding milestones!! She's so smart and so beautiful!! Thank you all again for all the support!! We love you all!! Keep praying for Elsie and a cure for this confusing disease!! We're becoming pros at this but would love to say someday she USED to have diabetes!!

 

Take Care,

McKenzie, Sarah & Elsie!!!

Long awaited update...

OK so our computer has been down and getting a new hard drive etc. for a couple weeks now. We have been having a great time with Elsie in these last few weeks, Her sugars have been kept at a well maintained level. We have started getting the hang of this whole exercise thing. Its been awesome to see her swim and play and she LOVES to play in the water at the beach. She has absolutely no fear - which is good but gives Moms a heart attack when she dives underwater - she'll always come out smiling.

We have had a couple lows from the exercise!! But we have been really good at bringing her up from a low without going sky high - which TRUST me takes a lot of finessing!! We are pretty proud of ourselves. We have a very active little lady on our hands. - She always makes new friends at the park and plays so well with them - The older kids at the park protect her and make sure she goes down the slide safely and its kind of awesome to have them guide her and Moms can relax at the park!!

Today we have a dentist appointment at 4:30pm - SO nervous - not sure what to expect!! We were encouraged to get her into the dentist fairly early because of the nighttime lows we get and have to give her juice or milk at night - and her saliva will naturally be higher in sugar from the diabetes so we'll have to have more dental care more likely - so we're trying to get her comfortable early - Sarah didn't have any cavities until she was 21 years old - so lets hope Elsie follows that side of the gene pool for dental issues... :-)

Everyday is a new day and a new blessing for us to spend time with Elsie - We are beyond blessed and thankful for all the support from friends and family  - Elsie's birthday party is about a month away and we are so excited to share that day with family and friends!!

Take care,
McKenzie, Sarah & Elsie too!!

Keep on Keeping on...

So we are doing well and we having nothing major to talk about. Just wanted to check in and let everyone know we're doing well. Elsie is growing so much and talking so much more. It is now pretty regular for us to have fairly full conversations with her. She has quite the vocabulary. She picks up on our emotions and on our body language and its funny!! She knows so much sign language and we try to teach her a couple new signs each day. Really taking advantage of this sponge of a brain that she has.

We have had some eye opening experiences in terms of her sugars being brought down (and might we add pretty aggressively) from exercise. Never did we know how much playing outside could bring her sugars down. We were getting a few lows (70's and 80's - nothing too bad) just from her being outside and playing on the play place in the backyard. We've been newly educated on how to work on keeping those numbers in a healthy range. So we're still doing a few changes and some tweaks to perfect it.

She has a new routine at bedtime that her baby doll has to sleep with her in her bed on her own pillow. AND when we tuck her in at night we also have to make sure her baby doll has covers too - and if Elsie decides to sleep on her belly her baby doll must also be on her belly and vice versa. She is so funny - but always like to take care of her baby doll. She'll be such a good big sister when that time comes...

SO all is well for now, we are thriving, we are living life and - getting ready to celebrate her birthday party this summer - and might we remind you that this will be her FIRST birthday NOT in a hospital - so Mommies are pretty much going all out for this!!

Our JDRF walk is scheduled for September 14, 2014 at Beutter Park in Mishawaka, IN. We have a walk team "Team Elsie 'Moo'ves for a Cure" anyone and everyone is welcome to join our group - if you do so you can do so at this website http://www2.jdrf.org/goto/TeamElsie I am hoping to update this page in the near future to make it more personal. Also if you are wanting to walk with us on this day please specify that when you register -

Thank you all for the support and the love we feel it and LOVE knowing our sweet baby is SO loved...

Take Care
McKenzie, Sarah & Elsie