Our long story shortened...

20 years of being in love

14 years of marital bliss

5 years of infertility

9 months of a high risk pregnancy

2 perfect boys (at the same time)

1 heart failure

1 type 1 diabetes diagnosis

1 happy life

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I am a stay at home mom who is raising twins. One of my guys has type 1 diabetes and one does not. I am writing this blog to unite type 1 parents or twin parents. Comment on my posts or in the "what's your high?" and "what's your low?" to join the community of parents just trying to do the best we can!

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Whats your low?

Enter you:
The real you.
The "no one on this site knows you so why not just put it all out there" you.
This is the spot where you can write your "low" for the day.

For example: if your daughter just broke your heart because some stupid kid at school called her Robot Girl because of her pump, put it here. We, the parent community, are here for you. Just post, you will feel better.

32 comments:

Shari said...

Rocco is 436 after stupid class Christmas party!

Shari said...

So hard to know how much to push your children into something that is good for them that they have no interest in.

Shari said...

Zeke got his first kiss... And he hasn't even lost a tooth yet...

Shari said...

Rocco's a1c was higher than last time. :( I guess all that sitting at school is effecting him.

Shari said...

I hate sugar parties!

Shari said...

Recently, a good friend of mine told me her son is experiencing kidney problems as a complication of his diabetes. She is a great mom and takes care of her son wonderfully. It made me so sad. I guess I assumed that if you keep up on your diabetes daily and have a good A1c, none of the complications can "get to you". How is my little guy ever supposed to be so vigilant about his health? How is he supposed to spend everyday for the rest of his life monitoring, and counting

Lacy Piippo said...

:( My 4 year told me that his insulin shots "hurt a lot and not a litte." I don't know how to help him with the arm and leg shots. He's ONLY ok with his hips but we have to rotate!

Shari said...

Poor little guy! You can always ask the doctor for numbing cream (EMLA) cream or use "magic ice". Which is just an ice cube to numb it before the shot. Love to him!

Jan said...

Every so often we have to hold down my son (dx apr/12, 7yo) to do finger pokes and insulin. This morning was one of those days. Hard to take when I had to drive him to the children's hospital because he was showing 'large' Keytones in his urine. After the one hour drive to get there, we sat for 2 1/2 hrs, I checked his sugar and Keytones at 2 am this morning and he was showing negative. Not sure what happened and neither was the dr, but it was certainly a scare!

Shari said...

Hi Jan, I am so sorry that sometimes the finger sticks and insulin administration are hard for your son. I can only hope he will use that fighting spirit to fight off all the negative things that can happen from this disease throughout his life. Those darn keytones can be tricky! Thanks for sharing!

Anonymous said...

Low of the day... poking my daughter's finger three times and getting the E-4 display, "not enough blood." Finally got a good drop on the fourth stick, and voila... NO MORE TEST STRIPS. Off to a bad day. :-(

Shari said...

Sorry Anonymous, I accidentally hit delete instead of publish but here is your post! Thanks for posting and I know how a mystery "HIGH" can drive girl crazy!
My low is when my daughter is "HIGH" on her meter with ketones, We don't usually have a clear reason why she's suddenly so high and it is so difficult to bring her down. Usually, it is followed by hours of lows, which are equally as frustrating!

Shari said...

Doh! Darn it! If you live close to me, I can give you strips!

Nicole W said...

My kids don't have diabetes. But here is my "low" of the day - yesterday my middle child who is 4 made me a book while I was at work. Page 1: "I hope you don't have to go to work next summer." Page 2 - I want you to play outside with me." Page 3 - "I love you."

*sigh* nothing like Mom guilt.

Lacy said...

*sigh... my low right now is trying to figure out all new carb ratios and lantus after the honeymoon ended suddenly... and tomorrow we go to the endo :(

Stacey said...

I am trying to get my daughter on the pump. I was just about to give Medtronic $2500 for the pump, supplies, CGM and Sentry when the doctor's office called and said insurance will not cover a 2 night/3 day hospital stay that is required by her doctor. The stay is $2800 per night. Who has $8100 just laying around? So now I am in the process of finding a new doctor that does not require a hospital stay for training.

I was wondering what other people had to do to get the pump and the proper training.

Shari said...

Lacy, I am so sorry to hear that.:( doesn't it just make you want to climb in his body and take out his somewhat working pancreas and stick it in a jar for when they are able to rebuild them with stem
cells ? I always wanted to yell "stop!!". Keep calm and carry on...

Shari said...

Nicole, that stinks! I guess we will all go to the grave with guilt no matter how hard we try;)

Shari said...

Stacey, that seems ridiculous! We went to an old school and the medtronic rep taught us in two one day sessions. We learned one day and then came back a couple of days later to go over any questions we had. Call the Medtronic rep. They have been amazing to us and I am sure they would move mountains ( ie, find you a new doc that doesn't require all that) especially if they want to sell you all of those goods. Tell them the first rep that helps you will get a spotlight hero blog post on everyday highs and lows! ;)

Camille Brightsmith said...

Well hello there. I am a mother of boy girl twins, about to turn 6. Chloe has Diabetes and Max doesn't. My constant low is Max's lack of confidence generally in life. Chloe is a trooper, great with her pokes and shots, and super confident all the time. Poor Max gets compared to her and then has to deal with her getting all this special attention all the time. I am curious to hear ways other parents have dealt with this. He has a therpist now, but I need all the help I can get. He is such a good and wonderful child, but he thinks he isn't! Its killing me.

Stacey said...

Thanks Shari!! Medtronic was a great help and we have an appointment with another Dr in a few weeks.

I love reading your blog because my daughter is the same age as your boys and it helps to have someone who seems to go through exactly what I do. Thanks for sharing all your experiences!!

Mel wiseman said...

I have 3 and half yr old frat girls... 1eats pretty much anything and sleeps like a dream...the other one eats well but not a wide selection of foods... but is a nightmare at night's.. I can count on 2 hands how many full nights sleep I've had since they arrived... I love them with all my heart... but as a single mum I'm exhausted.... that's my daily low.. nit enough sleep... having tried most sleep routines etc. :-(

Shari said...

Ugh! Poor max! I just ordered a book recently called "Thicker than Water". It is a book about siblings of special needs kids. I, too, am always concerned about Zeke. How much attention does he miss out on? I know we love them entirely but do they always feel our love? It is a good topic for a post. Once, I read the book, I will blog about it and maybe we can all share stories and help each other. Thanks for your comment. I feel your pain. I'll try to help.

Shari said...

Stacey, how did it all go? Do you have all the goodies yet?

Shari said...

Ugh! Mel, I don't know how you are doing it! Being a single mom of twins must be really hard. Please, know I am thinking of you and rooting you on! You can do it! Hope I can help make you laugh sometimes!

Stacey said...

Abigail got her pump on Oct 10 and she loves it. We definately have a lot more freedom. We are still getting used to the site changes but other than that things are great. Thanks for asking!!

I guess this post really belongs in the Highs section :)

Shari said...

WAY TO GO Abigail!!! What an accomplishment! The pump is such a nice tool in the world of diabetes! Stacey, try to ask your doc about EMLA cream for the site changes. It numbs the skin. Way to go, too Mommy! I know how scary starting the pump can be! Thanks for "shari"ng!

tami said...

My son caleb is 12. And a t1d since aug 1st 2012. He recently had a science project due which was a poster about t1d. When he was almost finished..his last topic was to name long term affects of diabetes. When reading info about this he became very upset. Wanted to "quit" diabetes and was for the first time having an emotional breakdown. He has never once since his diagnosis expressed these feelings. He has always said " it could be worse mom". It broke my heart n resulted in crying myself to sleep that night. How do u talk to your t1d kids about this stuff? Besides the importance of good control..exercise n lifestyle? The real fears of what can happen? The seriousness of lows n highs? Any advice? Thanks, tami

Shari said...

Hi Tami, I am so sorry about you and your son Caleb feeling the effects of the long term complications of T1. I wish I had some advice for you. I have never told Rocco or Zeke about "what could happen". Since he's had it since he was only 22 months, he was always just too young to know. Not sure when I will finally have "the talk" with him. I do know that my father-in-law has had diabetes for 35 years and is now 67. He has no complications! At all. He has been wonderfully diligent about his control and that has resulted in a happy retirement! Since I haven't had the experience to answer your question, I am going to do what I like to do - ask my Dpeeps! So I am going to put up a post to have the more experienced parents give you guidance. Thanks for opening up and sharing on Everyday Highs and Lows! I appreciate the trust you give to me and our readers!

Pat said...

Tami - so sorry for what you & your son are going thru! my daughter is 10 & we've been at this for over 9 yrs now. We had to talk about it once when she happened to see one of those commercials talking about complications, so figured she was old enough to know. I told her that is why we are so diligent about her care, the constant blood sugar checks, never missing a bolus (might have forgotten a few times over the years in rush to get to school & be 1/2 hr late, but always gets the insulin). She is very aware now of what A1C means & is very involved in her care. I explained that people with complications are from a time when it took a long time to read a blood sugar, or even before blood test & they had to test urine. That they didn't have all these devices that help us to keep her in better control. Sometimes people that don't take good care of themselves, then risk the consequences that will happen later. I felt she was mature enough to understand & have a frank discussion. I also told her that sometimes things happen as much as we try to avoid them, but we will do the best we can when things arise, just like we did when she was first dx'd at 11 months. sending big hugs your way. 12 yrs old is such a tough age anyway - then to have this all on top of it. Just keep the lines of communication open. Take care..Pat

Moira said...

It's really important for kids AND PARENTS to know that all those stats on complications are from the PAST. And even the near past, things were different. Back when my daughter was dx in the 90s there was no rapid acting insulin, no lantus, kids were almost never on pumps, meters were big and took a minute to count down and didn't work as well (not tht they are perfect now but still) .... there was no using ACE inhibitors to ward of kidney issues .. it has all changed. If you study the stats for the future (the suggested stats) then you will see that really, almost anyone living in a first-world country who has T1D iws NOT going to suffer complications. You need to let your son know this .... we all need to let our kids know this. This is one of the many reasons I don't like endos or parents using it as a threat or "reason" to turn things around when a kid is in burn out. Because 1) it's not totally true anymore and 2) the kid just thinks (wrongly) "Well I'm ruined and screwed so why bother." PLEASE share with your son that his data is old ... that it all has changed. And that he is going to live as long as anyone without diabetes and be healthy. he's going to have to do his daily care and for that we want a cure ... but things have changed for the better. My daughter had elevated kidney and liver things when she was in her teens. when we went to an adult endo he said "You know this is not permanent, right" And we were like NO, we DON"T. Well, he knew. And he was right. She's an adult now and FINE. all labs fine, no more meds for that stuff. Please share with your son.

Risa Chuang said...

My daughter is 7 years old and was diagnosed at 2 1/2. She has seen the commercials and has heard about potential complications. I always felt since having diabetes forced her to take care of herself in a way most kids did not, that it also makes her mature enough for a brief age-appropriate discussion about the complications. One thing I realized over the last 6 years is that her feelings about her diabetes continued to change as she got older. As a young child she knew no differenty and I took it for granted that she appeared to have "accepted" it. As she got a little older she started asking when there would be a cure, and wishing she didn't have diabetes. I am sure as she approaches the tween/teen years things will be different. I feel so deeply for what you are going through as living with diabetes is a constant emotional roller coaster - that first year or two can be the toughest and most overwhelming to get through. But, once we started meeting other T1D families through camps and outreach programs we witnessed over and over again physically healthy, well-adjusted kids of all ages. They all had different stories to share about how diabetes has affected their lives, some of them heartwrenching, but we always left these encounters with positive feelings. That was when I knew that we can and will manage this disease, and that my daughter will be ok. Good luck with everthing and know that you always have support.