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.
I just wanted to let you know I understand. I know how hard this is. My daughter was diagnosed at 12 months, almost three years ago. It may not seem like it now, but it does get easier. I'm not even sure that's the right word, but you will get used to your new normal. But what you're feeling is normal... and it will be okay. Not today, or tomorrow. Not even next month (unless you're super-human). Just be okay with what you're feeling and don't beat yourself up. If you have any questions, please ask. Sending you and your daughter HUGS!
ReplyDeleteThank you so much. I'm not use to sharing my feelings but with this Type 1 Diabetes I've found that it helps tremendously to get everything out. It also helps knowing that other parents have been through or are going through the same thing.
ReplyDeleteWow! Those pictures just really tugged at my heart. I'm not a parent & I didn't have diabetes as a child so I don't have much to offer you by way of support. But I have been a Type 1 for 20 years this past June. So maybe what I can offer you is hope. I know it doesn't seem like it now, but it DOES get better. And there is a whole group of people just waiting to support you. We call ourselves the DOC - Diabetes Online Community. And we welcome you & Elyssa with open arms.
ReplyDeleteI know the bills are awful. Let them sit awhile. They won't go anywhere. As to the shot sites, maybe print out a picture of a body (I have one I can send you) and then let her put a little sticker on it where she wants to get her shot. That way she has some control and you also can both keep track of where she got her shot last so you can rotate sites. Once all the main sites are filled up on her paper she gets a prize and you start a new sheet.
ReplyDeleteWelcome, welcome to the DOC! It's not a place any one of us wants to be, but I can tell you that I would not have gotten through this last year without these ladies. :)
ReplyDeleteMy son Adam is 5, and was diagnosed last August at the age of 4. So while you are a month out...we are a year out from diagnosis and I can tell you that it gets much, much better. I started blogging right after he was dx'd and it was a godsend. hugs to you and your sweet girl.
Stephanie www.mylifeasapancreas.blogspot.com
My heart goes out to you and your family. My daughter was dx'd in Oct 2010 and I too wasn't a cryer (like you said about yourself) until the D came into our family. Make yourself comfortable with the DOC we're all here to help each other. Also, if it's 2am and you have a question post it on a DOC site, all to often I get a response within a couple hours...lots of D parents don't sleep.
ReplyDeleteOh love!!!! I'm so glad you've found a community online.... it us the best. You are one of the strongest mommies I know. I wish you lived closer so I could help with the laundry and dishes.
ReplyDeleteWelcome! Sucks that you are here, but I'm glad you are! There is such comfort in finding those who are living the same life, dealing with the same struggles.
ReplyDeleteYes, it does get better, but there's no 'rule' as to when that will happen. Take things as they come...celebrate all the victories and let those not so great moments go as quickly as you can.
HUGS!!
The only thing certain about diabetes is that it is always changing. There is always adjustments, there is always that unexplained bg number that comes out of left field. There are days when you want to scream and days you will feel like a rockstar because you kicked some diabetes ass that day. Point is... don't beat yourself up over the numbers. Diabetes has a mind of its own and believe me... you can go nuts trying to control it all. I did!
ReplyDeleteMy husband went with me to the Endo on Monday(I usually take Justin alone) He was talking about his A1c and asking me what I was going to do if it was high. I looked at him and said... "if this ones not good, I'll have a brand new one in 3 months". It has taken a long time for me to get to this place and though I can't honestly say that it doesn't hurt deep down when numbers are "off", I have learned that a number is just that... a number. A place to start when an adjustment is needed. Whats important is that Elyssa is happy and that she is a kid first.
You will figure out the food thing and tricks that work. You will become a pro at this. You will get to a place where you are making your own adjustments and you will know your daughter better than her Endo ever could. It will take time and you will always learn something new... even almost 3 years later :) Just try not to burn yourself out trying to set deadlines. You may not like me for saying that, but I did because I am the same way and sometimes diabetes doesn't like to play on my terms. Keep dancing to the beat of life(I love that) and when the beat changes... adjust.
Welcome to the DOC! My name is Reyna and I am mother and pancreas to Joe. He is now 8 years old...diagnosed 5 years ago when he was three.
ReplyDeleteI so, so, so wish I had known about the DOC a few years ago. It is a wealth of information and support and love. Welcome. xo
A big HELLO from the DOC! I'm Nikki, mother of Andrew. Andrew is 9 and was diagnosed 8 months ago. He also has celiac disease.
ReplyDeleteWelcome!
I'm so sorry you have to go through this. My heart goes out to your family.
ReplyDeleteOur daughter Roxy was diagnosed at 21 months (2/26/10). She is now on the OmniPod insulin pump and wears a DexCom CGM. Her A1c's are still higher than we would like, even after 6 months on the pump, but we are finally getting the hang of things and have gotten much better at keeping her BG's steady. Lower, steadier nights; fewer spikes, etc. We found that reading as much as we could in the beginning gave us the tools to ask better questions at our Endo appointments, and ultimately figure things out for ourselves. I'd be happy to share a list of the books we read that were truly educational, much more so than the classes offered at the hospital. We also switched Endos and are now part of a smaller (not at the hospital) practice. Much better. The online diabetic community (DOC) has provided an immense amount of great information and support, too. Don't hesitate to reach out. You may have already heard from Laura Houston and Meri Shumacher (they both have blogs, see links below), but if not, reach out to them because they are awesome.
We love the OmniPod and Roxy handles site changes well. It's just one quick click and it's done. The CGM is a God-send and has really given us peace of mind at night. It's not perfect, but if you can get a little extra sleep, it's totally worth it. My husband and I have also found that alternating nights for who gets up to do checks has really helped. I can go one night with no sleep, but don't do well on two nights in a row. :)
Please don't hesitate to contact me if you'd like to talk. I'm on FB, just look up Anna Folsom.
It isn't easy at all, but for us it's easier than it was a month after diagnosis. I hope that you find that to be true over time for you as well.
Take care,
Anna
http://www.houstonwehaveaproblemblog.com/
http://www.ourdiabeticlife.com/
I am truly amazed at how many Diabetic children are out there. My eyes have been opened to a whole new world and way of life. I'm so glad for the D.O.C. I feel like I've been saved/relieved in some sort of way. I guess it's the feeling of "I'm not alone". We go to the Endo today so we shall see what he says about pumping. I think it will help tremendously but we have found Elyssa's having an allergic reaction to adhesive on Band-Aids & from the Demo OmniPod. This might cause us to wait longer to pump. Hmmmm Don't know what we can do about that.
ReplyDeleteHi! My name is Sara Fincham and my daughter Ellie is 5 years old. She was diagnosed when she was 3. I am so glad you found the DOC so quickly, I think you will find it to be a huge support for a very long time!
ReplyDeleteThe reaction to the Omnipod may be able to be dealt with, get with the rep. There are lots of products to address all sorts of adhesive issues! Ellie has the Omnipod and a Dexcom 7 continuous glucose monitor. She received both 4 months after diagnosis. Both pieces have worked out great and Ellie was very very happy to stop the daily injections!
Give yourself and your family time to learn about Type 1. It seems so urgent right now, so important and scary...at times helpless. Pace yourself and remember that unfortunately this is forever and unfortunately you have plenty of time to get your managment figured out. Control is an allusion and D has it's own mind. Over the last year and a half I have learned to redefine my definition of trust, I NEVER trust that the way we are doing Ellie's managment is going to work every day...this has kept me on my toes for those out of nowhere numbers and allowed me to continue learning about Type 1 every single day since January 19, 2010. Ellie did the same thing with food that your daughter appears to be doing, they figure out pretty quickly that food and shots go together and I think (as it did for me too) it just spoils eating for awhile. We just bolused after she ate for awhile so we wouldn't give her too much insulin for her meals that she wouldn't finish. Soon she'll be able to tell you how much she'll eat and be pretty consistant! I wish I could give you a real hug, but I can only give you a virtual hug OOO. Check Ellie out on facebook (Sara Fincham) you'll see all the pictures of Ellie doing all the things your daughter will do as she grows to be a big girl with that Type 1 she's been handed...your are more than welcome to friend request and/or e-mail me too if you have any questions or want a pep talk!
Loves and hugs from the Fincham Family to you and yours!
Whoopse! email is : sarajeanfincham@gmail.com and facebook is the Sara Fincham picture has the family standing in front of the van, little boy in a stroller! There are more Sara Finchams than I thought! XO
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