Saturday, March 3, 2012

CMN Radiothon

 E with Kelli and Mudflap
 E and Grace, another miracle child

Big brother, Landon got to go too

While we were in the hospital, getting E's diagnosis, the staff asked us to be a miracle family. Of course we said, yes. They have 6 miracle children this year. Every child was a patient at UMC for a different reason. They have a radiothon, with the local station, KLLL and a telethon on KCBD to raise money for the hospital. The Radiothon was last weekend. Brien and I went in a few weeks earlier to record our stories. They did a monolog of us with music in the background. And we did a live interview on the morning show. E had a great time. She loved meeting all the DJ's and radio staff. They treated her like a princess. Everyone tried to get her to say something on air, but she refused.We asked all of our family and friends to donate in her honor. All the stories played periodically over the weekend. They all brought me to tears. It's so heartbreaking to hear these parents talk about the struggles and battles their kid goes through everyday. It was fun to be a part of something so wonderful. It felt good to be able to help the hospital raise so much money. Over $161,000 was raised. That's awesome.


E checked her blood glucouse (with very little assistance from me) for the first time 3 nights ago. I am proud and sad at the same time. I don't know which is worse, me pricking her finger or watching her do it to herself. No child should have to do this. It's just not fair. Is this something I should write in her baby book, like 1st step, 1st word, 1st tooth? I haven't even been able to write in her baby book anything about diabetes, yet. Something about writing it in there is so hard for me. I can blog about it, and talk about it all day, but writing it in her baby book is completely different. I guess, because everything else in the book is happy, sweet and cute.

She went to her first bday party last night, since the diagnoses, and had so much fun. She swam, and ate some cookie cake. But for some reason I was sad. I was worried the whole time that her numbers were going to be very low because of all the swimming, (but both times I checked her she was 108, then 109 yay!).  No parent should have to worry about that while they are watching their kid play and have fun. It just breaks my heart that she has to deal with this everyday. I HATE diabetes. I truely do. I HATE that so many kids have this disease hanging over their head, keeping them from being like their friends in everyway. I HATE that people are so dumb about diabetes and ask the dumbest questions and say the dumbest things. I HATE that people try to give me advice on how to cure her. I HATE that she has to be pricked and stuck to be kept alive. I HATE that when she feels bad or is moody we feel like we need to check her numbers.  I HATE it all.

Monday, February 6, 2012

1st Holiday since D

This Friday is Emmy's Valentine's party at school. This is our 1st holiday since the big D diagnoses. I feel very uneasy about it. The teacher told me they are having cookies in the morning for their snack, and ice cream sundae's with ALL the fixings that afternoon. YIKES! Can you say diabetic nightmare? My 1st thought was to keep her home that day, but that's not fair to her. We have to learn how to deal with these situations and let her be apart of things. It's just scary not know how many carbs she will actually be getting. I am used to reading labels and have that down pat. But guessing, is something I am not good at, yet. How many carbs are in a spoonful of crushed oreos?? humm?? How many carbs are in a spoonful of sprinkles, a few m&m's and a little dab of chocolate syrup?? I have no idea. The teacher told me I could go to the school during the snacks and monitor what she eats. We haven't dealt with her eating like this yet. We have been very strict with the 3 meals and 2 snacks (15 grams of carbs or less) a day and thats it. Live and learn, right? That's all we can do. Wish me luck!

Thursday, January 26, 2012

1st doctor appt.

This is a picture of Emmy's door. She puts a sticker on it everytime she gets a finder prick or shot. This was after just 2 weeks.

Emmy had her follow up appt. today, from the hospital. I really like her dr. She is very down to earth and easy to talk to. She said that Emmy is doing good. We don't need to change anything right now. She is still in the honeymoon phase. I'm really dreading for that to be over. Hopefully, it will be a long time from now. I pray for a miracle that her pancreas won't cometely shut down. Emmy amazes me more and more everyday. She is handleing everthing so good. Thank God, she is so tough. She does have her moments when she says," I don't want to have diabetes. Landon is lucky, he doesn't have to get shots." That breaks my heart. We were chosen by the hospital as a miracle family for the children's miracle network. We did our interview for the radio, yesterday. I feel good helping the hospital. It's a fun opportunity for Emmy too. She is doing very good at PDO. Right before the diagnoses she was so moody and did not want to go. Now, she feels better and is enjoying going. Her teacher said she can tell a difference too. I go to her school and check her before lunch then give her a shot afterwards, if needed. All the other kids have a ton of questions, but it doesn't seem to affect Emmy.

Sunday, January 22, 2012

so much to learn......

All weekend I have read, blogs, websites, receipes, and any and everything else about diabetes. The blogs by moms with T1 children are helpful. I have so much to learn. This is a very frustrating and complicated diease.  It's my job to keep Emmy healthy and keep her numbers where they need to be. As one mom put it, I am her pancrease now, in a weird sort of way. It is a big, and demanding job. One mistake and her numbers can go way up or way down. It is constantly on my mind. There are so many decisons. Is this food good for her? How many carbs are in this? How much insulin should I give her? Should we get her a pump? Which pump would be the best? Can she have this, right now? Those are just a few of them.  I am doing my best, but is that good enough?? People keep saying, " before long, it will be so routine, you won't even have to think about it." Really???? I don't see that day coming for a long, long time. She is handling it so good. She hasn't complained or argued about anything. She did ask me last night if she would have diabetes forever. When I said, "yes," she had a pitiful look on her face and kept playing with her toy. I wonder what is going through her mind. This all happened so suddenly. One day she is thirsty and tired, the next, she is in the hospital, getting finger pokes and shots, constantly. She has felt good, ever since we got home from the hospital. She and Landon have been getting along unusually well. She has spent the night with my mom a couple of times too. I can tell when her numbers are high or low. When they are high she gets very sensative and kind of aggresive. When they low she is tired. But, for the most part, you would never know she had diabetes from being around her. Which is better. If she has to have a diease, I'm glad it's an invisable one.

Wednesday, January 18, 2012

Back to PDO

For the first time since the diagnose, Brien and I almost forgot to give Emmy her long lasting insulin before bed last night. OMG! She was already in bed, when I remembered. On a good note, she slept in her OWN bed all night. YAY! This has been an on going battle for some time. Emmy went back to PDO today. I was very nervous. Since we are so new to this I want to check her and give the insulin. I volunteer at my sons school from 11:00-11:20. I went home to get all the things I needed to check Emmy and give her insulin if needed. (We had already counted all the carbs in her lunchbox the night before.) I get there with one test strip. I pricked her finger and didn't get enough blood on the strip so it read error. Ugh!! I go into panic mode. What do I do now??? Emmy says she wants to eat at school, so I rush home to get more strips. She sits there, starving, ( she can't eat until I check her) waiting on me. I get back check her, 165, she eats ever bit of her lunch, I give her a shot kiss her bye, and rush to the grocery store. Whew!! What a day. She seemed to have had a fun day despite the lunch ordeal.

Tuesday, January 17, 2012

Diabetes sucks!!!

Well, I'm a blogger now. Why? Because my daughter was diagnosed with type 1 diabetes last week and I feel like I should keep some kind of journal. Don't expect fancy writing, perfect grammar, good spelling/punctuation. Im just an ordinary mom dealing with the shock of finding out my 4 1/2 year old daughter has a disease. Last week was the worst week of my life. We went to the hospital on tues., and left on thurs. We came home completely changed. Our lives now consists of counting carbs, checking blood sugar, and giving insulin injections. At first, I was incredibly sad. I could not hold back the tears. My heart was breaking for my sweet baby girl. Now, I'm pissed. Why? Why did this happen? Why does she and/or any person have to live their life like this?? She doesn't deserve this, no one deserves this. But then, I'm reminded, this can be managed. It could be worse, it could be much worse. Emmy is much stronger than me. From day one she has been so stubborn, and strong willed. Now we know why God gave her those traits. She can do this and so can I. It's hard, very hard. And it's not fair.