For those dx this year or more recently - How are you doing?

Once in a while, I like to ask this question, because looking back we can truly see how far we've come.

So, how are you guys doing? What struggles have you had to deal with and what hurdles have you overcome?

What is your advice as of now?

 

We got the diagnosis in June of this year, 2010.

Didn't lose him, so we're doing wonderful! Came close though, which is still rough to think about.

The hurdles are still being jumped. They aren't really diabetes related but most definitely affect his care. They are mainly caused from having two very different families involved and the complications that creates.

Diabetes wise it's been a pretty easy adjustment, surprisingly. He does great with the "ouchies" finger pokes and just fusses with the "owies" shots. I've always read labels and been pretty focused on nutrition in general so not a big adjustment there. I've got a younger child too, so even getting up in the middle of the night is pretty normal for me.

My advice is to never stop learning, but to pace yourself. It's so easy to get overwhelmed with the advice and (often conflicting) information out there that needs to be sorted through to see if/how and when it applies to your real life situation.

Thank you for asking this question . . . I'd love to read what other newly diagnosed families are going through. :cwds:

 

in 2 days it will be 10 months since Rileys Dx and well this is pretty much just life now. Except her getting sick Monday and me panicking but that was a first. Now that I have done it once I should be good next time.

Riley is doing pretty good. She only cried twice to me right after her dx about it. She gets well pissed at food insulin and BG testing from time to time but over all she is doing ok. I am fairly blunt about things like yesterday she was having a hissy over well I dont even remember but it was during lunch she pushed the food away from her folded her arms like she wasnt going to get. So I laughed and said "oh ok go ahead and have a low and die, cause that makes sense to do over nothing" She gave me a dirty look and kept on eating. She tries to use D once in a while like that to get her way but momma dont play that game. She is doing a lot of her own self D related care. She can figure out her carbs and insulin ratios. She pretty much so knows her correction but is often under by 1 not sure what she is doing there but its mental math so that might be why. She injects herself with the pen almost every time during the day. She can test her own ketones ect. Puberty has messed her up but we are going to figure that out too.

The day she was dxed was one of the worse days of my life. She was my healthy child and well having one healthy child means or meant a lot to me. I dont think I can really explain it tho. I know I am dealing with it well now. D is just another thing in daily living. You get use to it so fast even tho its in our face all day long I dont think about it often its like having to pee you just do it. Its just apart of our lives. I went back and read blogs from the first couple of months and oh boy I was a hot mess back then. I didnt think I would ever get anything. I still have learning to do and know mistakes will be made but I am a mom not a pancreas.

 

7 Months into it ... and I have stopped crying every day (only once of twice a week now

Here where we stay, we have a "Good Morning Angels" radio program once a week were they help people in need - mostly with money. This morning on my way to work, it was on again. This morning's story was about a 10 year old boy in hospital with Leukemia. Apparently it's the aggresive type with no cure. The boy has got a few months to live and with that pain and all the discomfort with chemo which they are giving to him anyhow. I then realised that living with D is not the end of the world. Yes, it is horrible and ugly and everything, but at least my child is at home and she can laugh and play and swim and plan a happy future and maybe, just maybe there will come a cure.

With that in mind, I think I finally made peace.

 

It's been 9 months for us now (on Oct. 4). My main focus is no longer diabetes - it's become "new normal". We have experienced a lot of "new normals" with DS. Newest dx is autistic spectrum and bipolar. So right now that is the biggest focus, getting his meds adjusted correctly for that. Praying we get the paperwork by the end of this month to re-enroll him in his current insurance.

I am doing things I didn't think possible at dx. Adjusting his insulin needs all by myself just like they told me I would.

His main issue is how his other diagnoses interfere with D. Rages, refusing to wear the pump, instead carrying it around. That was ok until yesterday when he dropped it and it pulled out the infusion set. I had to run home before work, put a new one in (which is always a challenge if he is awake) and get back to work on time.

And his little autistic mind - oy! The sticker on the back of the pump was sticking up just a little on the edge, and it drove him nuts. But did he tell me or ask for help or advice? No! He peeled that sucker off. Now it's no longer waterproof and we have a new pump due to arrive today. He's only had that one since June and it was new - I'm sure the replacement will be refurbished.

As soon as the new pump arrives, it is getting a skin put on it that will NOT come off. I told him Animas said he MUST either have a skin on it or wear it in a pouch/pocket. He will do that since it's not Mom saying he has to do it.

 

We're at 8 months here. Still feel too new to have advice! Doing OK though, very nervous about our endo visit this week with football, poison ivy, and recent stubborn highs, expecting a less than stellar visit.

Fighting some highs that are irritating, a teen that is a bit too laid back, and while getting a groove feels good it is also easy to get lazy, I have found. The early days of stress kept things humming, when D becomes routine it's easy for us all to sort of almost...ignore. Not sure that makes sense or not, I am just finding that the more D fits into that category of "brush your teeth" instead of "stop the blood from dripping onto the carpet" that it's simple to sometimes ignore the fuzzy teeth, you know? As a teen my son is mostly independent in his dosing and lately I've had to step in some and tighten his routine, he's doing great on one hand and a little too relaxed in another.

I am personally struggling emotionally right now due to the upcoming diabetes walk, finding it very difficult to accept donations and see MY kid's face on a poster. I'm having a hard time accepting that this is OUR LIFE.

On the one hand we're all doing good. On the other there are some challenges at this moment in our lives.

 

Coming Friday ... Luke's pump

At dx in Feb. I thought how is he ever going to do all the things he was looking forward to doing this summer - going away to camp for 10 days in another state !!! But he did that and much more -- thank goodness for the honeymoon it has made things much easier!! ( and cell phones).
At dx the first person he met was a the endo fellow on-call - who was diabetic himself since age 4... he was awesome and has helped us tremendously - we make a point to see him when we r in for checkups!
Luke is very conscientous (thus far) - HATES- being over 140!! We had our first rebound this past Sat. night -(we ate out and I think gave to much insulin) -- Numbers just kept climbing --I thought he was going to have a heart attack !!

Nervous, nervous about pumping - getting a minimed on friday (hoping for CGM approval). Best advice is to take it one day at a time - and pray for a cure!!!
Final note, thanks to all who post and reply on this site -- it has been a godsend to us !!!

 

its been 11 months for us. Things feel mostly normal for us now, especially with the pump, I dont know if things would be this normal if we were still doing MDI, because she griped about that A LOT, but maybe by now she would have been more used to it, who knows!

I guess its more like a new normal.

Having juice boxes and fruit snacks on hand all the time for a 16 year old is still a little odd, since we stopped buying juice boxes when she was about 7.

Packing for camping trips is still an adventure though.

 

It will be 12 months next month. We are doing okay -- it is our new normal.

Going from MDI to pumping has improved things in a lot of ways despite the fact that DD tolerates shots and fingersticks extraordinarily well (the only shot she really complained about on MDI was nighttime Lantus). We are getting less sleep now that she's pumping, but it is worth it.

We've been very fortunate that DD is generally quite healthy and except for a few colds, has not been ill. I am dreading practicing "sick day management."

Our biggest hurdle post-dx, was the private school DD attended for full-day kindergarten. I was providing all D care. There was a teacher who had had gestational D (whose mom was Type 2) who volunteered to count carbs and do shots, but I did not take her up on it. I was more concerned about classroom issues ... there were 20+ kids in the class ... and the school/teacher was just no equipped to provide care. We moved her to half-day public school. She's doing fine and we have an excellent school nurse.

The biggest hurdle that I am working on right now is getting DH as involved in management as I am. I need him to pay as much attention to the numbers as he used to.

Althought the dx was overwhelming, I wish I had received more training/knowledge at dx (e.g., start treating lows with 15 g., but if DD goes high, try 10 g. next time, etc.).

I also am ... in retrospect ... not as pleased with our endo as I originally was. In looking back at DD's MDI records, I see that her ISF was totally screwed up -- and believe that I sent her BG yo-yoing up and down as a result. I think the endo knew we were pumping and therefore was not as engaged in "crunching" the MDI numbers. I also did not ask for as much help with that because I did not see the yo-yoing myself.

 

Almost 6 months for us.....my son is doing wonderfully and pretty well emotionally. The rest of the family is doing well, me- I'm still an emotional wreck at least once a week. It hits me and I feel like I did at dx all over again.
Today is his 9 th birthday and I have cried all day. I made him birthday pancakes (a tradition) and then I cried at how unfair this disease is. I am trying to get a hold of myself before we go out to dinner (no carb info, small town diner, no set sizes/portions)-he picked the place. Then his party is Saturday....I keep thinking about his birthday last year. It was so easy.....I miss our healthy child.

One thing this disease has taught me is to never take health for granted and than we are so much stronger than I ever imagined.

I know we are honeymooning and I am trying to brace myself for the real hurdles....I am scared.

 

Sarah was also diagnosed in February and started pumping about 4 weeks ago. We are getting settled into the new way of life (although all the coming holidays scare me) and are trying hard to still do all stuff we have done in the past.

My only advice is to trust your instinct. The I:C and ISF are great, but sometimes you just have to use your gut about whether or not to treat at 90 (if you suspect they are dropping fast) or when to correct. I am still working on this!

 

We are only about 6 weeks into this, and it is still pretty overwhelming.

My son is doing amazing with MDI, and I cannot believe how strong a 4 year old little boy can be.

I'm waiting for our "new normal" to become normal.

 

Dx 6 weeks go. I'm still pretty much freaking out on a daily basis

Matt is doing very well. He gives his own shots and tests his fingers without compliant! Never has he said I will not do it. My worst time was the day he said, "Can we stop now?" How crushing to see my sweet child stand up to the leviathan and flinch only this once! D has shown us that this mild little boy with a huge heart will be a very strong man one day. I am proud.

After reading this forum and speaking in person to other families I know that we are blessed. Blessed with support from family and friends, blessed with the love of each other, blessed to live close to Vanderbilt... it goes on and on.

My advice is one that, if you are reading this, has already been taken up- join this forum! There is nothing like talking to other moms. No web site, no Dr can take the place of these wonderful friends.

 

YES!! What works for you may not work for another, but it's always good to read different perspectives, even if it's not what you're looking for. There's always something to learn, and may one day you can use it. Who knows, right?

Funny you should mention this. I think I've made peace too. About time too, after 4 yrs, LOL. It's still very hard, but it's like second nature now.

Good! When D is no longer in your face, it's good, I think. Not to sound all-knowing and all that, but I do think it's a good thing.
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I think as YDMV, so does our journey with D. As you can see, it took me a long time to come to terms with this new life. Some have already done so much earlier.

Thanks for sharing all your "where we are now".

 

Almost 10 months into it, we are managing "OK", recently we have a set back with the numbers, my daughter got a little sick and the numbers were everywhere and they put her on NPH at night again, and we hate NPH, but tweaking and tweaking we are doing better now. Would love to have more control and less injections, maybe we can get that with a pump, but our endo is not a fan of the pump, and it will be a while on MDI.
Her fingers are pretty bad, even though we rotate them and we are using the tiniboy lancers.
She is managing very well for a 2 year old, no complains at all, only once in a while she gets fuzzy with a shot.
She got caught in the transition from baby food to toddler's so it have been hard introducing her to new food and trying to avoid a high.
Some days are great others we still have a hard time with in emotion wise. Still got the question why? why her? why us? What we did wrong? I guess we will never get that answer.

Thanks for letting me vent and thanks to this forum we learn something new and useful everyday to help us fight this disease. :cwds:

 

We're almost at 11 months and things are normalizing. Going on the pump was the absolute best thing for us. He hates set changes but our "control" is so much better. I still have a lot to learn about how to handle the difficult foods. I think I've got McD's down, but pasta is still a challenge. The only advice I'd give is to come to CWD often. You'll learn something new every day. :cwds:

 

Wow. What great responses. It takes such effort and focus to get through that first year - every one of you is a hero in my book. We are 12+ years into D, and the overwhelming thought I remember from that first year (1998) is "will I ever be able to do any of this without the cheat sheets in front of me?" It does get to be a new normal, doesn't it?:cwds:

 

We're only 2 weeks into this, so we are still adjusting. But, things seem to be going ok. He does wonderfully with his BG checks and his shots. His school seems to be adjusting to things and has done better than I initially expected them to based on our first phone call. We managed our first birthday party at Chuck E Cheese the weekend after he was released from the hospital with no problems, so that helped me feel ok about managing this. I know that we wil have hard times, but he is a strong boy who has adjusted amazingly well. I know that we will be fine. My biggest issue right now is getting DH on board in dealing with things and helping out. I also am concerned about finding a babysitter at some point that can handle his care. We are a military family and have no family nearby, so that makes things a little harder.

 

4 1/2 months here...

Getting used to living w/ D

Ds does great except on doing his own MDIs, but I won't complain. I'm so proud of him. He's my "paper cut boy." Any little scratch, ding or scrape is a big deal. But pokes and shots? He takes 'em like a champ. And has since Day 1. What a trooper!

Just wish we'd fall into range on a regular basis... feel like something clicks, then the numbers go ker-fluey again. And I can't figure it out or understand why. And that brings on the tears of frustration for me. What parent likes feeling helpless when it comes to their kid, D or no D?

But thankfully we just keep plugging along...

Our next goal is to teach ds to inject OR to see if it's time for a pump like the Ominpod. It sounds great in the brochure, but I wonder what it would look like in real life. How much of a learning curve is there? Would it feel like 2 steps back? Or would it feel like a huge freedom (from MDIs)?

Thanks for all your encouragement ladies and gents. It means so much!

 

almost 6 months here.. in two days it will be 6 months since we knew something was going on. Kayla is still in a very strong honeymoon.. TDD of about 10 to 14 units. We are starting the process for a pump.