Friday, December 30, 2011

Bye 2011 I want to start 2012 off right

Well I haven't blogged in a while. Elyssa's birthday, holidays, and year-end at work have made these past couple months crazy. January 1st will mark 5 months of living with Diabetes. The coming of the New Year has made me think of everything that has happened this year. It's funny....Everything that's happened this year before Elyssa's Diabetes Diagnosis just seems to be a blur. It's like our life didn't start until after the diagnosis. It has definitely been a hard year but I have met many great, strong people who are also living with Diabetes in their lives. Everyone has been such a great help and inspiration. Diabetes has truly taught me how precious our lives and children are. I cherish every moment with my daughter.
We've been getting a little lazy with watching/counting her carbs. so this New Years my resolution is to get back in to crunching the numbers and watching Elyssa's Blood Glucose levels closely. I know one of our biggest downfalls is not giving her all the insulin 15-20mins before she eats. We also swag alot of things so we will have to measure, weigh, count, bolus and hope we did it right to get good numbers. Elyssa is worth it so we have to do it. Bring it on 2012 I'm ready for it all the struggles, the smiles, the triumphs, the stress, the tears, the laughs and every moment I get to spend with my daughter!

Tuesday, November 1, 2011

November 1st JDRF T1D Day

November is Diabetes Awareness month. Today makes 4 months since Elyssa's Type 1 Diabetes Diagnosis. She has a cold with congestion & a runny nose. For children without diabetes a slight cold isn't really a big deal but for us it's scary. I have to prick Elyssa's finger more often to make sure her Blood Glucose levels aren't going crazy. We are pushing & watching everything she eats more closely so we make sure she has the right amount of insulin & drinks tons of water to flush life threatening Ketones from her body. These Ketones are what caused Elyssa to be in Diabetic Ketoacidosis when she was diagnosed. If they're not watched she can go into a diabetic coma or they can cause death.
I really don't know if her body/brain could handle being in Diabetic Ketoacidosis again in such a short time. After Diagnosis she wouldn't talk she would just point and make grunting noises or baby talk. That was really scary I totally thought she had brain damage but doctors said we had to wait 3 months to do testing to see if she did have brain damage. I was glad that after a month she started saying some more words and 2 months later she was able to say sentences. So one little cold has brought back all these emotions and feelings of when she was in Diabetic Ketoacidosis.
I hope that diabetes awareness month does help get the word out there that Diabetes can happen to anyone at any age. I hope that media can catch wind of it and talk about it on every channel. Children with Type 1 diabetes are dying from its complications. I see all these campaigns right now about bullying. Well I would love to see commercials about Diabetes Awareness too and how important finding a cure is. I was trying to think of what I could do or say today to try and spread awareness and the thoughts just brought tears to my eyes. I wish we didn't have to spread awareness about this chronic disease. Why can't people see how important the need for a cure is? I wish Elyssa was never diagnosed with Diabetes, I wish nobody had Type 1 Diabetes, I wish we didn't have to live with the fear of all it's complications everyday, I wish it would just go away, I wish there was a cure for it!

Thursday, October 13, 2011

Elyssa's JDRF Video

I keep forgetting to post this video here on my blog. I was going to update her JDRF video now that we've starting pumping but I really haven't had the time. So I'm just going to leave it as it is and next year I can update it. So here it is and I still tear up when I see it knowing everything we've been through these past couple months.

Monday, October 3, 2011

We are up & Pinging it.

So Elyssa's butt is now hotwired. She is hooked up to the Animas Ping & the Dexcom. I swear it's almost like the first week she was diagnosed. I was sweating, shaking and 4 hours later my chest is still pounding like crazy.
Elyssa fought & kicked then fell right asleep and it wasn't bed time. She was at 87 then 85, Dex had her at 76 with arrows down. I already knew I had to wake her up because there's no way I could let her sleep the whole night at 85. Well she woke up and wanted to eat everything in the fridge. I tried to give her low carb items but nooooo she wanted the thing I hate the most.. a quesadilla.
I've tried to rock the tortilla to insulin ratio but I always lose. Well whats one more lost battle she's at 85 right. Damn 2 triangles of quesadilla she shot right up. I was upset at myself because I still think like I'm using insulin pens and that I have to wait to see how much she's actually going to eat before I give insulin. Before she was done with the 2nd triangle I give some insulin. Voila.... insulin given. No fighting, no kicking no running around trying to find the insulin pen, pen needle & alcohol pad. A little anxiety went away with the ease of giving insulin but I'm still afraid to give too much so I held back and the tortilla won again. She shot up to 300. Crap!! It's okay though after 2 weeks of pumping I want a rematch tortilla and we'll see who wins.

Tuesday, September 27, 2011

No more shots, Don't want the flu shot this year. Thank You

Are Flu shots mandatory now??? I keep getting recorded messages that my daughter needs a recommended immunization. Then it says flu shots are important to keeping her healthy. I feel like telling that fucking recording well guess what 3 days after last years flu & H1N1 shot she got sick, her asthma kicked in and she was hospitalized. Now she has diabetes and gets shots every day. That Flu shot didn't really keep her healthy now did it. She had so many colds last year. I know the Flu shot doesn't cover colds but when it does then they could say it will help keep her healthy. I have received recorded messages from the Pediatrician, Health insurance and the state. WTF I even got 2 letters in the mail telling me that flu shots are now available and she needs one.
This year since its our 1st year with Diabetes I wanted to make sure she was covered for everything and I did want to get her a flu shot but she has been fighting us on all of her shots. We are tired of struggling so I don't want to traumatize her once more this year and get the flu shot. We will be skipping the flu shot this year. Hope the Pediatrician, Health Insurance & State don't send the police. I just don't understand the pressure or the persistence of pushing for us to get her flu shot.

Monday, September 26, 2011

Pump Training Tomorrow

Tomorrow we have our pump training for Elyssa's new pump. We watched the video today I sort of went through the handbook. I had a short attention span and kept forgetting where I was reading so I gave up. Elyssa has been really fighting us when we try to give her insulin injections lately. Pumping can't come soon enough. I said before I am afraid to give up the 24hr long acting Levimir for short acting basal insulin. I'm afraid we will get more lows. I'm also worried she is not going to handle having the pump on her 24/7 but we shall see. I think she's smart and will rather the pump with a site change every 3 days rather than shots 4-5x a day. I'm really sick of all the up & down BG numbers that Diabetes causes. Last week we got tons of highs now we're having big drops and lows this week. It's really depressing when you try so hard to get good numbers but Elyssa is so sensitive and bounces around all over the place. So today I was good with her numbers. We didn't have anything over 250. Yay.
Todays BGs were
2am 187
4am 153
7am 59
11am 56
2:30pm 242
3:30pm 144
5pm 131
8pm 142
10:30pm 209

Not proud of the lows but sometimes it's hard to get them back up. I think we did a good job with Elyssa's BG levels today. I hope we can do a good job with the pump too.

Tuesday, September 13, 2011

Will she remember the Good or Bad days?

Saturday Elyssa woke up from a nap, she wanted milk, I handed her the milk and oh shit she couldn't grasp the cup. Before she took her nap she was 157. I checked her really quick and got a 53. What the hell why didn't I check her BGs first before I took my sweet time getting some milk? Did my brain briefly forget she has diabetes? I got the Smarties, a banana & juice so she could pick which one she wanted. I opened the Smarties and she kept crying saying something like twister or twist it. Ok I couldn't figure it out so Cake Mate gel went into the mouth she licked it, liked it & I gave some more. Well after a couple mins. of my heart dropping, wondering if her BG was raising we finally figured out my darn independent 2yr old just wanted to open/twist open the Smarties wrapper by herself. So she ate 1 Smarties, 1/2 banana, 1 Glucerna mini chocolate bar & 1/2 cup of Soy Milk.
I didn't care if she spiked I just wanted her up and over 100. So when I checked her 30 mins later I expected a 200+ but nope she was at 100. Then I thought crap maybe when I got the 53 I should've checked her again maybe she was lower. She has been really sensitive to insulin the past couple days so who knows. I felt so bad I cried. It took 20mins. for her to actually eat all the stuff. What if in those 20 mins. she plummeted lower? all those thoughts, What Ifs, and coulda, woulda, shouldas take a toll on the emotions. I beat myself up for it for about 2hrs then I looked at her. She was dancing and singing. She came over and gave me a big hug and patted my back. It was like she was saying mommy I'm ok don't worry anymore. Maybe I forgot a step, missed a step or ran around crazy like a chicken with my head cut off trying to find sugar in my house but everything turned out okay. I tried my best. Elyssa was okay. I had to let the fear go, take a shot of Tequila or maybe 2 and just shake off all the emotions.
Sunday came we took Elyssa to get her hair cut. I think maybe the DKA & High blood sugars took a toll on her hair especially since she was pulling it out when we got home from the hospital. I chickened out and didn't go as short as I wanted too. It still looks cute but her curls are gone. :'( Then we were on our way to the park and came across a family farm selling jams, eggs & pickeled items. Elyssa got to see horses, goats, rabbits, chickens, quails, peacocks, pigs and a really huge tortoise for free. Elsewhere farms might be common but in Vegas I couldn't believe it. Elyssa is so scared of animals and all insects. She is even afraid of ladybugs it's so sad. The owners said we can take her anytime so she can get use to the animals. We spent so much time there when we got to the park the sun was going down. She hurried and went on the slides, the swings and ran around. She hasn't done that in a long time. All day her BGs stayed between 100-175. It was a great day. I will probably remember all the scary bad days. Hopefully she will only remember all the good days!

Wednesday, August 31, 2011

I thought I got the hang of it, Guess I don't!

After meeting with the representatives of 3 different insulin pump companies we have gone with the Animas Ping. I do still want the Omnipod but since we are new to this I like the fact that I can change her insulin dose through the remote or on the pump. My mind is really not good at remembering everything right now so I know I would probably forget the PDA thing for the Omnipod and that wouldn't be good. I just need the endo. dr. to write the prescription for the Animas so we can get it ordered. I really hope that doesn't take too long.
It is so true that once you think you have Diabetes down you don't. Our first 2 weeks Elyssa was sooo high 300-HI. Then weeks 3 & 4 we had lows 33+. Weeks 6,7, & 8 were 60 to 250 but she was mostly 100-200. Which I thought was pretty good considering how much work it took to get there. I thought to myself wow I can do this, I finally got the groove of it. Well, Week 9 has started off really stressful. We are back in the 300s. Elyssa doesn't even seem bothered at the 300s these past 2 days & nights. I don't know where the hell they came from but I can't seem to stop them from happening and they're hard to correct. Her 3rd Birthday is coming up in about 2 months so don't know if it is a growing issue. I think I always try to find a reason of why she gets high even though I know I will probably never find out why. We had it down to where Elyssa only needed 3-4injections but now with these 300s we gave her 5injections yesterday (5x of getting everything ready, 5x of chasing her around the house, 5x trying to hold her down, 5x trying to hold my breath hopefully I don't hit a blood vessel or she doesn't move, 5x consoling her & wiping away tears). Man I want an insulin pump. I know there will be another learning curve with the pump but these injections are really stressing me out right now. I guess I'm in the I'm already sick of this mode. Can someone PLEASE hurry and find a cure?? I know people have been dealing with this sooo much longer than me but I don't want to do it anymore. Where is the effin Rewind button? I just want to rewind back 2months is that too much to ask? Ok I'm done whining. Sorry
Ok I'll end on a cute note. We were at my friends house last nite and Elyssa was 340. I gave her 2 units and nothing. Usually 2u would bring her down fast. Elyssa wanted to eat some pretzels. We had the kids run around & play to see if the insulin would take effect. Well Elyssa ate some pretzels then my friend's 5yr old son said "Elyssa Don't eat more pretzels, you're gonna get MORE Diabetes". I thought it was Too Cute, I loved it!!!

Sunday, August 14, 2011

Which pump to Choose???

We went to the endocrinologist on Weds. and got me frustrated. First we fill out the questionaire paperwork full of questions each time you go asking about BG levels, any low episodes, what did she eat that day it's like 50 questions. Then we met with the Dr. and they ask "What would you like to get out of this appointment today"? Well my daughter has only been diagnosed a month so really I don't know what the hell I'm supposed to get out of the appt. I did want to talk about her numbers and about a pump so that's what I say. Instead of looking at all the numbers they uploaded from her meter he asks what numbers would you like to talk about. I respond all her numbers in the middle of the night that are under 70 are pretty important I think. So we changed her Levimir dosage at night.
Ok so now onto the talk about pumps. He said of course we can get her on a pump if you want let me go bring you some samples. So he brings 4 different colors of the Minimed Paradigm Revel Pump. Of course that was the pump I knew the least about. The majority of the people I've heard from on the DOC have Animas Ping or Omnipod. So I tell him we got a demo pod from Omnipod and we really like the no tubing aspect. He discouraged against it because he said there is a high failure rate compared to other pumps, that its big and Elyssa could hit it off her arm, that it's harder to take off etc, etc. He said I should start off with the Minimed since it has the CGM integrated into the pump so it will be less remotes to carry around. Ok thats a valid point but all weekend I have looked all over the web and see pros and cons for each pump but I still prefer the no tubing. I thought well I can't knock it til I try it so I thought I'd go with the Minimed. That way if something went wrong with the Omnipod I wouldn't hear I told you so from the Dr. Then on some peoples blogs I saw that you have to enter into contracts. So would that mean I couldn't change the pump til the contract ends? If I'm going to be stuck with a pump I rather it be the one I want. Another problem is how do I get insurance to pay for it or how do I try to pay for it myself. So that might be another big factor go with the pump my insurance will pay for or struggle even more for the one I want.
I made a funny this week. Elyssa was playing with her lancing device and I said "Be careful you're gonna poke your finger". hahaha Uh Duh. She looks at me and said "you poke a me too much mommy, when the moon comes out you checka my finger, when im sleeping, when the sun comes out u checka my finger. It's crazy before you'd be scared of every poke, bruise, scrapes or cut your child could get. Now she always has pokes and sometimes bruises. Good thing is this week her vocab has really came back she's back to saying her silly sentences and we went through the ABCs, Shapes and Colors with no problems. So that was a sigh of relief. I was really scared that the DKA had messed with her brain a little. Now it's onto trying the potty training again. It seems like every time we got her potty trained she ended up in the hospital for Asthma and she had to wear diapers because she was all wired up. So now I'm really scared that she has Asthma & Diabetes and Flu season is coming.

Sunday, August 7, 2011

Week 4 with Type 1 Diabetes

One month from Diagnosis....Elyssa has received over 300 finger pricks on her tiny little fingers, she has had over 100 injections and has marks & bruises all over her arms, legs, stomach & butt. The saying is true insulin is not a cure for Diabetes it is life support. So even though it makes me so sad to see how scarred up and bruised she is we have to continue because without all those insulin injections my 2yr old daughter Elyssa wouldn't be able to live.
Each week has been better then the last but this weeks struggle was getting Elyssa to eat. She only picks at her food here and there. We aren't used to these new eating habits because she has always had the best appetite and always ate all her food. We had to fight all the low BG Levels and I had to resort to enticing her with chips or ice cream.
I guess since it's been 1 month since diagnosis I keep thinking about everything that has went on this month and how far we've came to keep her BG Levels controlled. Also, I keep trying to find ways of making our lives better or easier. So I really want to get her an insulin pump to avoid all the traumatizing insulin injections. Hopefully our Endocrinologist Dr. will approve on Weds. and we can get her a pump ASAP.
I was able to give Elyssa another injection all by myself today. That makes 5 times by myself 3 times in the leg and 2 times in the arm. She just really hates when we give her injections in her stomach and butt those are the hardest spots. Hopefully if I do get her a pump the site changes wont be as difficult and I can do those by myself. I've given myself a time line of having to get her numbers controlled & a better understanding of how different foods affect her by the end of August.
Bills have started coming in from our ER visit, the ambulance ride, and I'm still waiting for the 5 day stay in PICU bills. The emotional stress has been so overwhelming this month now the financial stress is adding to the chaos. Yesterday I didn't even check the mail because I didn't want to worry about anything else this weekend. As Elyssa dances around the house is her pretty green princess dress I remember my favorite saying "You just have to keep dancing to the beat of life". So for this weekend I have really tried to put the stress on the back burner and am just trying to enjoy being with my beautiful daughter that makes me smile.

Wednesday, July 27, 2011

Week 3 with Type 1 Diabetes

Well Elyssa's BG Levels haven't gone over 220 this week. We still wake up every 2 hrs during the night to catch when she starts going low. It has really worn us down but we have to do it for our daughter. She is not eating so I know that is contributing to the low levels. I think she has figured out if she only eats her no/low carb foods she doesn't have to get an insulin shot. She just wants to eat chicken, turkey, cheeses, eggs, lettuce, carrots, sugar-free Jello and a cup of popcorn. The Dr. has said she needs her 90g of carbs so we are pushing her to eat them. Her favorite food is pancakes and we can't even get her to barely eat her pancakes in the morning.
I just can't believe that my daughter's character has changed sooo much. She wasn't perfect before but she was a really good girl and obedient. Now she has been one tuff toddler to take care off. She is cranky, moody, doesn't listen, and doesn't know boundaries. She has to be watched continuously so it makes it very difficult trying to wash dishes or do laundry or anything else around the house. I don't know if it's because we've been dealing with the diabetes all month but she has forgotten some letters of the alphabet, messes up when trying to count to 10 and before she could count to 15 and she mixes up some shapes. I know she's only 2 yrs 8 months old but it feels like we have taken a big leap backwards in her development. Maybe it was the 5 day stay in the hospital being in diapers but she doesn't want to use the potty anymore. She will not drink out of regular cups we've gone back to sippy cups. I guess right now sippy cups are easier too because they have the oz. lines on them. Also, she was always so verbal before but now she just points at things and makes sounds instead of saying what she wants so we have to keep trying to guess what she wants in the refrigerator.
Elyssa is constantly sweating and no longer wants to take baths. She kicks & fights and it still takes 2 of us to hold her down for her shots. The endocrinologist asked if she lets us give her insulin shots without crying. Well sorry Dr. but no she is a toddler and puts up the biggest fight when she sees both of us coming at her. If she knows it's time for a shot she runs to a bedroom then locks the door, or to her closet and shuts the door and puts her weight on the door so we can't open it, she hides under the table, and she's hid under the kitchen sink in the cabinet and held on to the pipes while we tried to get her out. The endocrinologist said she will end up stabilizing and life will get easier but from what I have read and heard from other parents is that Blood Sugar Levels never stabilize and it is a never ending balancing act. I'm finally coming to terms with reality that Diabetes, Dr. visits, Injections, Insulin, Blood Glucose Levels, No Sleep & Moody child is now a part of our lives and isn't going to leave. So I have to try and suck it all up and just keep trying to do the best I can.
P.S. I have only cried a couple times this week and not daily like the previous 2 weeks and anyone who knows me knows I'm not the crying type. So Yay me!

Sunday, July 24, 2011

Week 2 with type 1 Diabetes

We went back to the endocrinologist and Elyssa's insulin dosage was increased so now we were dealing with lows.  That night we woke up at 2am and her BG was 34 so we were trying to get her to drink juice but she wasn't reacting. I was getting sooo scared but after a couple mins. of trying she finally grabbed the juice and drank it. Phew!! I just cried thinking about what would've happened if we didn't wake up at 2am to check her. Yeah I wasn't able to sleep after that. The next day we gave her insulin, her lunch, then later during her nap I thought I'd check her and again she was at 33. This time it was a little harder to get her to wake up and drink or eat anything but she did. Those mins from the time I tested her to the time she finally starts drinking are killers. My heart was beating so fast, my hands were shaking and I just kept asking her to drink the juice. We called the dr. and the insulin to carb. ratio was changed yet again probably like the 10th time since we've been home. Then I think I don't know whats worse the tantrums and screaming when she's high or the fear of her having a seizure or going into a coma when she's low. I just keep thinking nobody should have to live like this. I am so scared for my daughter every day. All the doctors & all the nurses said it will get better but I truly don't think there will be a day that I don't worry about my daughter.

Thursday, July 21, 2011

Week 1 with Type 1 Diabetes

We got home and scheduled appt. with pediatrician right away. Saw the endocrinologist right away. We got all the supplies, all the insulin but all the education was a blur from so many sleepless nights. Elyssa would have highs in the 400s and would have the worst temper tantrums. She would pull her hair out, hit her head on the floor, throw things, scratch her face and we would try to calm her down but sometimes I would just cry. This was not my daughter and I just kept saying to myself  I want my daughter back. I would correct her highs and give sufficient insulin for food but nothing was helping.

Elyssa's Type 1 Diabetes Diagnosis

I have never blogged before but my 2 yr 8 month old daughter was diagnosed with Type 1 Diabetes now I am left with so many questions and looking for answers. Our lives changed forever the night of July 1st, 2011. So much happened and I had so much to say I put the story on it's own page. It was a night, a weekend, a 5 day hospital stay I will surely never forget.