Natalie
  • Female
  • Muncy, PA
  • United States
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Natalie's Friends

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Natalie's Discussions

Infant diagnosis and impact on Breastfeeding

Started this discussion. Last reply by Natalie May 18, 2012. 12 Replies

Post breakfast highs!!

Started this discussion. Last reply by Simon Carter May 23, 2012. 28 Replies

 

Natalie's page for son Rory

Latest Activity

Natalie replied to Natalie's discussion 'Summer pump break' in the group parents of kids with Type 1
"Thanks! I wasn't thinking the option to just hook up for boluses and just give 1 shot of Lantus for basal. That would work well for those days we may be spending at the pool or during our trip. Will just want to be sure of the timing for…"
Jun 12, 2012
Natasha Bowlds replied to Natalie's discussion 'Summer pump break' in the group parents of kids with Type 1
"Have you considered doing the "untethered" thing? I think it involves giving your basal as an injection once a day, and then hooking up the pump to bolus. That way you can unhook the pump whenever you want, but still only have to give one…"
Jun 12, 2012
Natalie added a discussion to the group parents of kids with Type 1
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Summer pump break

Do any of you have experience with a child taking a break from the pump and using injections during the summertime? I have been thinking about discussing it with nurse this summer and seeing if Rory would be ok with it. It is challenging at times to simply allow him time to swim without worrying about his sites or time off the pump. Trips to the pool end up being too short for what he wants time to do since he is getting older. We are planning a trip to Myrtle Beach in August and there will be…See More
Jun 11, 2012
Simon Carter replied to Natalie's discussion 'Post breakfast highs!!'
"For the most part, you cannot avoid going high after a meal - most food, and especially cereals, are relatively high GI, and it takes a while for the insulin to cope with it, no matter what dose or insulin type you use. The trick here is to either…"
May 23, 2012
Jack's Mom replied to Natalie's discussion 'Infant Diagnosis and impact on Breastfeeding experience' in the group parents of kids with Type 1
"My son was diagnosed at 14 months, but he was on formula and not breast milk. However, he was struggling with "table food" so his primary nutrition was still formula. He was also diagnosed "early" in the disease, as his BG was…"
May 22, 2012
Natalie replied to Natalie's discussion 'Infant diagnosis and impact on Breastfeeding'
"I am used to controversy....I am interested in your thoughts on this. I have some of my own."
May 18, 2012
Natalie replied to Natalie's discussion 'Infant diagnosis and impact on Breastfeeding'
"At the time I inquired with his dietician and she said roughly the same amount of carbs as cow's milk. Since it was close to a year for him and the amount he was getting was most likely a half a cup or less I never did give him insulin for the…"
May 18, 2012
Natalie replied to Natalie's discussion 'Infant diagnosis and impact on Breastfeeding'
"I truly do not know if they have. They have never mentioned anything about this. ( the docs) It would be worth asking at his next appointment. I have talked about having the rest of the family tested for autoimmune antibodies but they always…"
May 18, 2012

Profile Information

Date diagnosed
November 16, 2007
Most recent HbA1C %, date of result (optional)
8.5
Type of treatment/devices you use
Pump
What pump model do you use, if any?
Medtronic Minimed Paradigm

Rory's story

Rory was diagnosed November 16th 2007, just one week before his first birthday. Rory was showing some classic signs of Type 1 Diabetes. I remember checking the internet one night for info on Type 1 diabetes and my husband thought it was crazy to think that was what Rory had. Yet everything I was reading was just like putting all the pieces to the puzzle together. His weight gain had leveled off, poor appetite, extreme thirst, excessive urination, (especially at night, soaking through his diapers and pjs, and crib sheets), irritability, and the yeast-like rash in groin area. I called to set-up an appointment the next day and I am glad that I decided to do that instead of waiting to discuss it at his 1 year check-up scheduled for the following week. We would have left for the weekend and been at my parents house celebrating his birthday with cake and ice cream! On the ride to the Dr's office I kept trying to rationalize that everything was due to something else. Rory was still breastfeeding and I thought my supply had decreased because the month before I had found out I was pregnant again, (little bit of a surprise) I thought maybe his increased thirst was due to that, but it still seemed excessive for a toddler. But he just wasn't himself and that was the bottom line. The pediatrician and I chatted casually about things thinking it was more a breastfeeding issue and how to start weaning, then we discussed the concern of possible Diabetes. I didn't think it was even diagnosed this young! She said they could check a BG before we left just to see how he was. The nurse came back in with the meter to check him and I was absolutely shocked when I saw the number, 531. I tried to think that I was just reading it upside down and it was really 135, but the nurse said "ohh, good think you caught that" and went to get the Dr. I just sat there in disbelief and started to freak. Even as a nurse I didn't have much experience with Diabetics in the hospital, and I had never seen a BG that high before. I could really understand then that he must have really felt sick. They sent us to the ER for stat bloodwork, which came back showing beginning of ketoacidosis. I called home crying to my husband that Rory was going to be sent to Geisinger Medical Center and admitted to the PICU. He had no clue what was going on and asked if it could wait a couple days. They didn't have a bed available right away so they had us go to the ER so they could get his IV started and get him ready for transfer. The poor little guy, who had never been seen in the Drs office other than well-child visits was now being poked all over for bloowork and IV sticks. They tried 2 times and couldn't get it and then made the decision to send him by Life Flight since the ambulance was taking too long. The Life Flight crew tried 2 more times and still couldn't get him so they decided to quickly load him up and get him there for the IV team to try. It was so heartbreaking to watch them load him up and I couldn't go with him. My husband and daughter had arrived at the ER just before Rory was sent and Mike was shocked to find out that the helicopter was waiting to take his little boy. I remember Alana, (4 years old at the time), being worried because she had never seen me so upset before. She had her arm around me as we watched Rory take off and she was patting my back saying "He will be ok mommy"

It took the IV team 2 more times before finally getting his IV started in his foot, (which became a challenge the next day when he wanted to be up walking around.) And we met the endo. doc and other residents and so began the overload of info and feeling of being overwhelmed and guilt of somehow causing this. He spent the one night in PICU, on all kinds of monitors, IVs, bloodwork every hour. I would have to stand and sway with him to get him to sleep. Everytime I tried to sit with him he would try to get in position to nurse and just cry more because I couldn't nurse him yet. Overnight his BG stabilized and his ketones cleared. By morning he was smiling and laughing again. It was so nice to see our little Rory's personality back. He then spent the next couple days in the regular Pediatric unit getting used to fingersticks and injections and for mommy and daddy to get used to all of it as well. I was lucky to have some background knowledge with being an RN, but it is still very different when it is your own child. And the beginning of feeling guilty for Alana not getting as much attention and missing special moments with her. We missed her preschool play that they had been preparing for all fall. Thankfully, my mom was able to come down to stay with Alana and she took the video camera to tape it for us. But Alana has always seemed very understanding of it all and knows it is very important for mommy and daddy to do the things we have to do for Rory.

And Rory became such a little trooper. It really is amazing how well kids adapt to change and it all just becomes routine. I guess the one blessing is he will always know this as part of his life and keeping it under control will hopefully be less challenging for him. Still as a mom and from experience as a nurse, I worry about the effects later in life. But the thought that in his life-time there may be a radical new development for controlling or even curing Diabetes provides some comfort.

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Natalie's Blog

Please Support Rory's Racers for JDRF Walk to Cure Diabetes!

Posted on April 13, 2010 at 8:13am 0 Comments

Our team of family and friends will be walking again this year on May 2nd to support JDRF. We walk for our son Rory, who is 3 years old and has had diabetes since a year of age. You may view his video on youtube, Rory's Racers. If you would like to make a donation visit this link http://walk.jdrf.org/index.cfm?fuseaction=extranet.personalpage&confirmid=87613652 Thank you! :)

Not in a good place

Posted on May 17, 2009 at 11:00am 6 Comments

I need a moment to vent. I am not in a good place today. I feel like I am failing my son and family as a mother and as a caregiver. I wanted to believe that after a year and a half we would have a better handle on Rory's diabetes and he would be in better control, but each day continues to be a struggle and we seem to have no consistent sense of control. I know this disease can be so unpredictable and make no sense so much of the time, and for him as a growing toddler, his blood sugars will… Continue

JDRF's Walk to Cure Diabetes

Posted on March 12, 2009 at 2:53pm 2 Comments

We will be walking in Rory's honor for the May 3rd Walk to Cure Diabetes in Elmira NY. To help raise donations I made a video of Rory's first year of life and experience with being diagnosed with diabetes. I have posted it on youtube this is the link: http://www.youtube.com/watch?v=3nv1erw55Dg

Rory now pumping away!

Posted on January 2, 2009 at 1:16pm 0 Comments

As of December 11th 2008, Rory made the switch from insulin injections to an insulin pump, the Medtronic Minimed Paradigm. We started with a couple trial runs: one with Rory just wearing the pump and then practicing with saline. He seemed fine with it so we decided to go for it. I have heard such great things about the pump and everyone I have talked to says it makes all the difference. I was ready for immediately well controlled blood sugars, but that wasn't really the case. I soon realized it… Continue

Comment Wall (22 comments)

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At 7:42am on March 30, 2011, matilda said…
oh, its been a challenge. but overall i am really happy he's on it. i'm tired and we've hit a few walls a few times but he's happy so i'm happy. we had a bad site yesterday that led to ketones, and vomitting and ugh... but i corrected it all and took the right steps to get him back on track so that helped. thanks for asking
At 9:54am on December 22, 2010, Manny Hernandez said…
Thanks for your kind words, Natalie!! I am glad you find the community to be a useful source of support and information.
At 3:46pm on July 27, 2010, Kelly said…
Natalie,

Thanks again for leaving your comment. I just read your one blog where you basically vented about the demands of diabetes.....I felt like I was reading my own words. We live in south Jersey and my husband works in N.Y.C. He is gone all day into the night. I can so relate to feeling overwhelmed and like I am the only one who can take care of my daughter....and it's become like a sickness that I feel like because I do it all the time I do it the best and can't trust anyone else to do it. I am a stay at home mom, and I couldn't imagine going to work and having to trust someone else to do what I do. I don't know what I am gonna do when kindergarten rolls around. I'll probably grill the school nurse the summer before, lol. P.S. I saw you are a nurse, I was in my 2nd semester of nursing school when Ava was diagnosed and I had to drop...with no thoughts of going back any time soon. I guess you just never know what life is gonna throw your way, and some days seem better than others....but yet we manage to get through them all.
At 5:15pm on April 13, 2010, Jessica05 said…
Hi, Natalie,
That is hard re: doing the sensor at an unsettled time. I remember doing the sensor and having to be very regimented in eating/exercise...all the harder when you're away from home! I also know about the swimming issue, I usually get pretty stressed when we have to do swimming or last summer's swim lessons. Afraid the adhesive will come off, not sure how much glucose they'll burn while they're swimming, will she go low, etc.

The salmon sounds delicious, but not something a preschooler would eat! :) Just tonight I got really frustrated with my girls who wouldn't even TRY the baked sweet potato french fries I labored over. I think the American diet is so hard to fight against...I'm doing my best! I actually got a great Diabetic cookbook from someone as a gift, and it's been great! Everything I've tried has been really delicious and they have all the carb counts, etc. But, it requires a lot of effort and planning...I'm feeling inspired now, but not sure how long this will last. :) I'm trying to make the whole family eat better in general so it's a family thing, not a Elisabeth thing. I really empathize with you on the picky eating issue and being aware of what others are eating. I always feel bad for E. when all the other kids are having juice boxes and she's there with her water or vitamin water. (she doesn't like Crystal Light or KoolAid sugarless) But, she doesn't seem to mind and knows that she only drinks juice for lows.

I hope one day we can meet with our little ones and they can see they're not alone! Great job on the potty training! How is it going with the pump attached? E. is just now starting to take the pump on/off herself and go by herself. Until now I've been going with her to help with the pump. I can tell she feels so proud.

Keep up the great work Natalie.
Jessica
At 10:37am on April 13, 2010, Jessica05 said…
Natalie,
Do you use Carelink with the Medtronic Pump? Learning more about it recently and find it very useful.
Jessica
At 10:36am on April 13, 2010, Jessica05 said…
part 2
Yes, potty training requires full-attention! I wouldn't stress about the food under you have the potty training under your belt, especially with the pump and all.

We're looking into the new Medtronic pump for E. as it has predictive alarms for the CGM. It would alarm 15 minutes before she goes low, based on the trend history. The algorithms are also supposed to be good and smaller insulin increments. You can also set the sensor alarms for different times of the day, so gonna research this.

I'm home schooling E. this year and possibly next year. Loving it! Not sure what I'll do after that...taking it a year at a time.

Jessica
At 10:36am on April 13, 2010, Jessica05 said…
Hello, Again~
It's fun to have a dialog going! :) Yes, I was told E. couldn't use the CGM when she was younger, but she got approved this year and the Dr. thought we could use it as a tool for a week or so per month. However, she did so well with it and I loved all the extra info, I asked if we could continue as long as she's happy with it. The Endo said yes. I can see why they need to be older as the sensor does make a bigger mark in the skin and takes a bit of time to heal. Also, the adhesive from the IV 3000 that you have to use to cover the transmitter makes a rash on the skin (for E. at least) and I have to put hydrocortisone on that to make it heal faster. We're able to wear the sensor for about 5 days before it starts to not work anymore.
The pump trainer said some people are more resistant to breakfast cereal and I could try increasing insulin by 10% if need be, but I haven't tried that yet. What kind of oatmeal do you use? I use an instant and usually cover for about 20 cb per 1/2 cup, given I add splenda brown sugar & some milk with it. But she still spikes up to 300's with that (when I was doing a sq. wave bolus) however now that I'm doing a regular bolus, it's been a bit better.

Yes, E. has become picky in eating and doesn't do veggies/fruits aside from low sugar applesauce. It's aggravating, for sure. I feel like I make the same things over and over and over for her. W/ her higher cholesterol, I'm also having to limit her frozen turkey sausages that she loves and cutting out egg yolks. Hoping that this next lipid panel shows lower cholesterol.
At 6:44am on April 13, 2010, Jessica05 said…
Hi, Natalie, We're doing really well. We started the CGM recently with the pump and although it's challenging at first, I love it. I LOVE those trend arrows and you have so much more info to work with. I also don't have to test as much if she's within a certain range. You know, I asked our Endo about being over 140 for kids since I'd read so much from the adults online about damage being done over 140 and she said that kids have different guidelines since too many low BGs can stop the growth hormones in kids. I didn't know this and am glad that Elisabeth is growing well! :)
That's awesome about the A1C...great work, Mama! :) Elisabeth's last A1C was 6.4, which was a shock. The Dr. was worried about too many lows with that. We have to see her again in a month, so we'll see what the next A1C is with the CGM. However, she's been having a lot of spikes after breakfast oatmeal, so trying to figure out how to correctly cover that. I want her to eat the oatmeal to try to lower her cholesterol, so I don't want to cut it from her diet.

It is a small world...amazing that someone also named Rory has Type 1! Are they the same age?

Glad to be in touch with you.
Take care,
Jessica
At 10:50pm on February 25, 2009, dlanakila said…
Hi Natalie, I'm glad sugarstats.com is helpful for you. Thanks for sharing your story here. It is so helpful the more us parents share our stories and eventually teach our friends and family how to best support us.
At 3:30pm on February 17, 2009, Jessica05 said…
Hi, Natalie, Thanks for the comment & I'm going to answer your email after the kids are asleep. Glad you liked the photos. I purposely tried to find pictures of her with her supplies & pump cause she always loves to see other kids pumps, etc. I have to see how far apart we are in distance, but I wish we could somehow meet up in the future and let them have a playdate! I think that would be really neat. I think as Rory gets older, he will start to realize that not everyone has it. Even now Elisabeth has been saying that her big sister doesn't have diabetes, etc. so she definately notices that she's the only one in the family who has to do what she does.

I'll email you later! Take care!
Jessica
 
 
 

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