Tuesday, January 31, 2006
This is Ariel Botzet.
She died at the age of 11. I pray that her death was not in vain. I pray that because of her and her story other will become aware of how important it is to step up and step in when you suspect a child is being neglected or abused. If someone had done this for Ariel she may still be alive today.
Rest in peace, Ariel.
Sunday, January 29, 2006
So, what do you think?
Friday, January 27, 2006
Some of my favorite movies:
The Wizard of Oz: I have loved this movie since I was a kid. I have seen it hundreds of times. I can pretty much quote the movie word for word. (Dorothy) "Well how can you talk if you haven't got a brain?" (Scarecrow) "Well, sometimes people without brains do an awful lot of talking."
Say Anything: I first saw this movie on a first date. The boy I was seeing at the time had just gotten out of a relationship with a girl named Ashlee. There is a line in the movie where one of the girls is singing a song about her ex-boyfriend. One of the lines in the song is "he likes girls with names like Ashlee" I've just loved it ever since. Even though that guy is long-gone out of my life (thank God). This also started my infatuation with John Cusak. It also made me a fan of the girl who sings the song, but I don't know her name.
Dirty Dancing: This movie came out when I was about 13-14. I just thought it was so romantic. Still do.
Weekend at Bernie's: For some reason I think this is one of the funniest movies I have ever seen. My favorite part of the movie is when they have Bernie tied to the back of the boat and he falls off and is gliding through the water. I don't care how many times I see it, it cracks me up every time.
Places in the Heart: I love the strong character played by Sally Fields. She is a woman who loses her husband. The bank tries to get her to sell her farm but she doesn't. She is determined to make it work on her own. And, she does.
Steele Magnolias: Another Sally Fields movie. I just love the story and it helps that it is set in the south. I haven't been able to watch it since R iley was diagnosed. Sally Field's daughter (played by Julia Roberts) dies from complications from Type I diabetes. Wheezer is my favorite. Every small town has a Wheezer.
When Harry Met Sally: I know just about every word to this movie too. "Men and women can't be friends because the sex thing always gets in the way."
Jerry Macguire: I guess I' m just a hopeless romantic. " I love him. I love him for the man he wants to be and the man he almost is." Ok that's a paraphrase. I'm not sure exactly what she says.
Ok, enough movies.
Some favorite books:
The Bible: the foundation of my Christian faith. My favorite verse: (I have it taped to my bathroom mirror so that I'll see it every morning.)
"So, do not worry saying 'What shall we eat or what shall we drink?' ...and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness and all these things will be given to you as well. Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it's own." Matthew 6:31-34
The Fountainhead: I read this book in high school on suggestion from a friend. I just fell in love with it. I'm not a fan of Ayn Rand's philosophy, but I just loved the relationship between Howard and Dominique. I used to have my favorite quote from the book framed and hung on my wall.
"We never need to say anything to each other when we're together. This is- for the time when we won't be together. I love you, Dominique. As selfishly as the fact that I exist. As selfishly as my lungs breath air. I breathe for my own necessity, for the fuel of my body, for my survival. I've given you not my sacrifice or my pity, but my ego and my naked need. This is the only way you can wish to be loved. This is the only way I can want you to love me. If you married me now, I would become your whole existence. But I would not want you then. You would not want yourself-and so you would not love me long. To say 'I love you' one must first know how to say the 'I'. The kind of surrender I could have from you now would give me nothing but an empty hulk. If I demanded it, I'd destroy you. That's why I won't stop you. I'll let you go to your husband. I don't know how I'll live through tonight, but I will. I want you whole, as I am, as you'll remain in the battle you've chosen. A battle is never selfless.......You must learn not to be afraid of the world. Not to be held by it as you are now. Never to be hurt by it as you were in that courtroom. I must let you learn it. I can't help you. You must find your own way. When you have, you'll come back to me. They won't destroy me, Dominique. And they won't destroy you. You'll win, because you've chosen the hardest way of fighting for your freedom from the world. I'll wait for you. I love you. I'm saying this now for all the years we'll have to wait. I love you, Dominique."
Ah, it makes my heart skip a beat now. I always wanted a man like Howard Roark. When my husband and I first met, I sent my best friend a letter. The only words on the letter where: "I've found my Howard Roark".
To Kill A Mockingbird: Believe it or not, I didn't read this book up until about a year ago. Holden had to read it for school and I read it too. He used to make fun of me because he'd come in while I was reading it and tears would be steaming down my face. It just shows how people can be so cruel and judgmental.
"First of all," he said, "if you can learn a simple trick, Scout, you'll get along a lot better with all kinds of folks. You never really understand a person, until you consider things from his point of view....until you climb in his skin and walk around in it."
I hope I haven't bored you. It's nice to take the scenic route every now and then.
PS: I just realized when I read what I said about To Kill A Mockingbird, some may think I'm saying that Holden was being cruel and judgemental. I meant the book shows how people can be cruel and judgemental. Holden was just picking on me as teenagers are prone to do to their parents on occasion. He thinks I'm a sap (and he's right).
Monday, January 23, 2006
I was out on the water. It was warm and the slight breeze kept it from getting too hot. That was when every day seemed almost perfect. The clear, blue water. The slight taste of salt in the air. The feel of the sun on my face. The beautiful bright blue sky. A slight ripple would come along every now and then and rock the boat gently from side to side, but it didn't really disrupt anything. I'd jump off the boat and immerse myself in the water. I would glide along. The water was so calm and serene. Every so often the sun would go behind a cloud only to emerge again a little later.
Then one day, it all changed. Suddenly the sky turned a sickly shade of gray and rain began to pelt my face. The thunder rolled and the waves started to crash and spill into the boat. One minute it was calm and the next minute I felt as if the boat was about to capsize.
I never saw it coming.
The storm has thrown me out of the boat a few times. I always thought I was a strong swimmer, but now I struggle just to stay afloat. I strain my neck and stick my chin out trying to keep my head above water. Still, I have gone under a few times. Yet, I always claw my way up to the top and somehow manage to drag myself back into the boat, exhausted, broken, and crying.
I've learned how to go on with life in the midst of the storm. The waves continue to crash around me and I've become accustomed to the rocking of the boat. I've learned to keep my head up and brace myself against the wind and the rain. I'm not getting knocked out of the boat as much anymore.
Still, I dream of the day when the storm will stop raging and the sun will come out in all its splendor. I know in my heart that day will come. There will be a day when the storm will be obliterated and there will be nothing but blue skies and calm waters.
Saturday, January 21, 2006
You are so beautiful inside and out. You have been given this horrible disease, yet it's just a tiny blip on your radar screen. You act like life has always been this way. You really are great and so big and you make me so proud to be your mommy.
I wish I could take this disease and just make it go away. If I could trade places with you I would do it gladly. But, this disease is shaping you into a wonderful person. It will make you stronger. It will make you determined. It will make you, you.
I want you to know that no matter what, you can do and be anything you want to do or be. You may have to work a little harder than others, but there is nothing, nothing you can't do.
Know this. You and Holden are my heart. I will always be there for you. I love you so much that sometimes I feel like my heart could burst. I just pray that you will have a long and happy life and that one day, you will know what it is like to not have to count carbs or take insulin.
Friday, January 20, 2006
By the way, Animas promptly returned my call to tell me they hadn't heard anything from the MD yet, and they really couldn't do anything until they got her paperwork.
Wednesday, January 18, 2006
Prayers are needed. I pray daily for a cure. I've heard Ellen say that it will take more than prayer to cure this disease, and she's right. But, prayer never hurt anything. I pray everyday that today will be the day that a cure is found. I pray not only for my son, but all the Josephs, Brendons, Daniels, Zachs, Daves, Alecs, (insert your child's/your name here) that live with this disease every day.
Now, another thing that will help is your time, your time making phone call and creating public awareness about this disease.
Some of you may not be big on prayer and others may say, " I just don't have time". Well, then they can always use your money. I strongly urge you to donate to help find a cure for this disease. There are many places to go to. My personal favorite is The Lee Iacocca Foundation .
I just find a lot of hope in Faustman's research. There are other places to which money can be donated. Please feel free to post your favorites in the comments.
Anyway, that's my rant for tonight. I will not, will not, will NOT accept that Riley will have this for the rest of his life. Call me naive if you'd like. I promise it won't hurt my feelings. I've acquired some tough skin over the years. Even if you think there will never be a cure, what will it hurt to throw a little money their way? Then when the cure does come you will have the satisfaction of knowing you helped cure the Rileys, Josephs, Brendons, Alecs, Zachs, Daves, Kerris, Allisons, Keiths...........of the world.
Saturday, January 14, 2006
The stages are as follows:
The basic premise is that we all go through these stages when grieving. We all spend different amounts of time in each stage and go through the stages in different orders. For example, some start with depression, then anger, bargaining, denial, and then acceptance. Others will go through it just as it is listed.
When Riley was first diagnosed, I went through a stage of denial. I kept thinking maybe the Dr. was wrong and his pancreas would again start working. I thought maybe the tests they did were wrong. He just had a little virus and things would be back to normal soon.
Next, it was bargaining. I bargained like heck with God. I would do ANYTHING if He would just heal Riley.
Then, I went through a brief time of acceptance. This one didn't last long before I moved on to depression. I just couldn't believe that my sweet boy would have to go through this for the rest of his life. The thought of getting up in the morning and starting the day by poking his finger just became almost unbearable.
Then, I'd totter back and forth between acceptance and depression. Then, a flash of anger. How could this happen to my child? Why? It's not fair! Why does he bounce back and forth from 55 to 400? I don't know who I was mad at, but boy was I mad.
Right now, I think I'm in the acceptance phase again. I've just learned to deal with the day to day fluctuations of this horrible disease. Even though I've accepted that this is the way that it has to be, I'm still not even close to being happy.
There are still days when I think I go through every single stage. My mood can shift so suddenly. Another thing about the stages of grief is that they can last for a long time. Sometimes I wonder if I will be going through them for the rest of my life. And that makes me angry....and another stage begins.
Friday, January 13, 2006
Mama Kin --- Aerosmith (my favorite Aerosmith song)
Love Shack----The B52s
Billy Jean---Michael Jackson (too bad he turned out to be such a freak. He's so talented)
Hard to Handle---The Black Crowes
Foxy Lady--Jimi Hendrix
OK, I guess that's enough to bore you with for now.
I was sure by now, God, you would have reached down and wiped our tears away, stepped in and saved the day, but once again, I say "Amen" and it's still raining.
(chorus)As the thunder rolls, I barely hear you whisper through the rain, "I'm with you" and as Your mercy falls, I raise my hand and praise the God who gives and takes away.
I will praise you in this storm and I will lift my hands, because You are who You are no matter where I am and every tear I've cried You hold in Your hand, you never left my side and though my heart is torn, I will praise You in this storm.
I remember when I stumbled in the wind, you heard my cry you raised me up again, my strength is almost gone, how can I carry on, if I can't find you?
I lift my eyes unto the hills. Where does my help come from? My help comes from the Lord the maker of the heaven and earth.
My second song is named "Held". It is sung by Natalie Grant and is off of her "Awaken" CD. I first started listening to it after Hurricane Katrina. I thought how it may be comforting to those going through that situation. Just one short month later I was listening to it and crying as Riley lay in the hospital.
Two months is too little. They let him go. They had no sudden healing. To think that Providence would take a child from his mother while she prays is appalling. Who told us we'd be rescued? What has changed and why should we be saved from nightmares? We're asking why this happens to us who have died to live. It's unfair.
(chorus) This is what it means to be held. How it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was when everything fell we'd be held.
This hand is bitterness. We want to taste it, let our hatred numb our sorrows. The wise hand opens slowly to Lilies of the Valley and tomorrow.
If hope is born of suffering, if this only the beginning, can we not wait for one hour watching for our Savior?
So, do you have any songs you listen to for comfort? I also have some I listen to when I'm in a good mood. I'll share those later.
Thursday, January 12, 2006
Random fact #1: I got pregnant when I was 16. I was with a guy that I thought I loved. (What was I thinking?) We had been dating for a while and he had been bothering me about it for a while, so one night, I gave in. We were at a friend's party. I wasn't supposed to be there. It was unchaperoned and my parents forbid me to go. I told them we were going bowling instead. They trusted me enough to believe me. Well, the trust ended that night, needless to say. Right after I "did it", I told him that was it. I wouldn't do it anymore. I was afraid of getting pregnant. Well, too late. That's right, my friends, I got pregnant and lost my virginity all in the same night. How lucky can one girl get? I went to a private school, where if anyone had ever gotten pregnant before, they quit school or "took care of it" privately. Neither of which I believed was an option for me. So, I had to literally fight the school board to continue to go to school there. (Now, keep in mind, that the jerk who got me pregnant also went to this school and he didn't have to go in front of the school board. Basically, because he had a penis and so did everyone else on the school board.) So, by a vote of 4 to 3, I got to stay in school there. I went on to graduate with honors and a full scholarship to college. After graduation I started college. I still lived at home so I could be near Holden, so I commuted 2 hours every day. I also worked at a grocery store. Anyway, I graduated from nursing school with a Bachelor of Science degree. It was some of the hardest years of my life. I wouldn't change any of it. It made me a stronger person, and I got Holden out of it.
Random fact #2: ( I will try to keep this one a little shorter). My favorite band is Aerosmith. I have loved them since 7th grade. Their "Permanent Vacation" album came out that year and I fell in love with them. I have been to 5 of their concerts. At one I was on the front row for a little while. For those of you who don't know me, I'm a fairly calm person and I don't tend to make a big deal of things nor do I tend to attract attention to myself. Well, have you ever seen the footage of the girls in the 60s screaming and crying when they were seeing The Beatles? Well, that was so me. I was screaming and crying. I don't know what came over me. It was like I was possessed. Did I mention I was only 6 feet from Steven Tyler?
Random fact #3: I don't drink alcohol. Yep, I am what some call a "T-totaler". I just don't like the taste and I don't like how it makes most people act. I find drunk people to be among the most obnoxious people in the world.
Random fact #4: I once attended Mardi Gra in New Orleans. Yeah, did you see fact #3? I was surrounded by drunk people 24/7 and I was miserable. I even came home early. I saw enough boobs and penises (is that the plural of penis or should it be peni?) to last me a lifetime. Not to mention, the horrible smell of vomit and urine that emanated from bourbon street. Lovely, really. I don't know why I let my best friend talk me into it, but I did.
Random fact #5: My husband is 7 1/2 years younger than me. I met him when he was 16 and we've been together since. I know, shocking. It's still shocking to me sometimes. I can't believe I did that, but I did and I'm so glad. He is one of the best things that ever happened to me. We've been together for almost 9 years and will have been married 6 years in March.
OK, that's it. I hope I haven't bored you. I really don't know anyone who hasn't been tagged, so I won't tag anyone. If however, you are reading this and haven't been tagged but would like to be, then consider yourself tagged and go for it.
Speaking of the pump, a couple of posts ago, I said we had decided on the Cozmo. Well, some comments by Carol G. made me revisit the Animas. I knew it had the lowest basal dose, but had not really analyzed what that meant. Cozmo's lowest basal is 0.05 and increases in those increments. So, it's lowest rate are 0.05 and 0.1. The Animas has a basal of 0.025 that also increases in those increments. So, it's lowest are 0.025, 0.05, 0.075, and 0.1. So, more lower basal rates to chose from. So, Michael and I went back to the Animas site and played with the pump a little more. Long story short, I faxed all the appropriate paperwork to Animas yesterday. A couple of hours later, a nice man from Animas called to say he had received it and would be contacting the MD and insurance. So, we're on our way!!! I'm so excited. I know it will be hard work, but I still can't wait. I just hope insurance goes through OK. I've called them before and they said pumps were covered at 80%. I just hope they don't deny Riley for some reason. If they did, I would be devestated. So, how long do you think it will be before I hear something?
One more question for you experienced bloggers. How do you post a link without showing the address? Instead of showing the http:// format, how can you just have someone's name there and when you click on that, it goes to their site? Care to share your secret?
Monday, January 09, 2006
In my last post, I said that no sugars over 300 since Lantus increase, well, yesterday blew that out of the water. 1 hour after supper and NovoLog, he was 328. (Pre-supper sugar was 191). OK, not much I could do because he'd just taken Novo. So, 2 hours later, his sugar was 425!!!!! His sugar has not been up to 400 since his first few days home from the hospital. He still had trace ketones. (He's lost a pound this week.) So, he got a full unit of Lantus, later sugars were 160 and 153. 3 hours after Novo: 271. One hour later, back up to 315. This was at 3 AM, so he only got 1/2 unit. It came down well after that. His sugar this morning was 133. He did spike up to 348 one time today, but came back down again an hour later. The 348 was before his new dose of Lantus kicked in. ( I just checked his sugar 3 hour after his Novo at supper and it's 259. I think the 1 1/2 unit of Lantus is helping, but it's not quite enough. I have a feeling, we may be increasing up to 2 units on Tuesday.
I cried myself to sleep for the first time in a while last night. Fatigue and worry just don't mix. My husband and I went to bed. I was trying not to let him know I was crying, but when he leaned over to kiss me goodnight, he could feel the wetness on my cheeks and I just lost it. I got a good cry out last night. I even went and layed in bed with Riley for a while and cried all over him. Thankfully, he didn't wake up. All I could think was, "This is so unfair. He has to deal with this for the rest of his life." Not fair, not fair at all. I know, life is not fair, but I want it to be unfair for me, not him. You try to protect your kids from as much unfairness as you can, but I can't protect him from this. There is absolutely nothing I can do about this, and it kills me. I know, I can control it, somewhat, but I can't make it go away. I just can't make it go away.
Saturday, January 07, 2006
Now, I have been reading "Pumping Insulin" and have figured out a rough estimate of what Riley's basal rate will be. When I first figured it, well, the Animas was really the only option (other than diluting insulin, which I'm not interested in either, since you can't dilute NovoLog and Riley would have to switch to Humalog. I've pretty much got his peaks and things figured out with the Novo and I really don't want to start figuring out how he responds to Humalog while starting the pump too.) Anyway, I don't think Riley's basals will be low for too long. You see, we've had some rough past few days. For those of you who may have read previous posts, you know that Riley had a "perfect" day on Jan. 2. No sugars out of range. Well, the bliss ended just as quickly as it began. Starting on Jan 3rd his sugars were just high, high, high. There were a few that were OK. (His range is 80-140 before breakfast and 100-225 the rest of the day.) Well, on the 3rd they were : 176, 143, 260, 372, 285,280,222,327, 321, and 316. Then, on the 4th and 5th, not a single sugar in range. Not one. So, I'm thinking his Lantus needs to be increased. I'm comfortable with adjusting the Novo but I've never adjusted the Lantus before. Well, I called the endo. and faxed his sugars late Wednesday afternoon. I had to leave a message. It wasn't really urgent since I wasn't supposed to give his Lantus again until the next morning. Well, on Thursday morning, his sugar was 224. ( It had been 299 at 3 AM) So, I took it upon myself to increase his Lantus to a full unit all on my own. A little while later his endo. called and said that was exactly what needed to be done. She also said from looking at his sugars that he may need as much as 2 units a day, but we're going to increase in 1/2 unit increments and see how it goes. So, after 3 days (today is day no. 3) if his sugars are still >140 in the AM, I'm to up it another 1/2 unit. Well, I think that is going to happen. Yesterdays AM sugar wasn't so bad (150), but this morning it was 206. He still pretty much doesn't have any sugars in range. He even has some trace ketones sometimes. He doesn't feel sick though. We haven't had anymore 300s since the Lantus increase. I've also noticed I've had to up his carb coverage a bit too. The endo said not to give any Novo after 7 PM unless necessary if his sugar is >300. Well, he doesn't have those nighttime lows anymore that she was trying to prevent. So, I gave him 1/2 unit Novo last night at 10:20 PM for a sugar of 287. I told my husband his little body just did not need to be out of range all the time. So, I got up every hour last night until his Novo wore off. The lowest his sugar got was 134. So, I'm glad I gave him the Novo. But, then it was 206 this AM, so in the morning we will probably increase to 1 1/2 units of Lantus.
So, I'm going to call Dr. Morris Monday morning and talk about getting a pump. I'm going to tell her we want the Cozmo and see what she says. I've done my own little math and decided that I would be OK with the Cozmo as long as he gets his Lantus up to 2 units. Now, this is just my opinion. I don't know what the endo. will say. Michael and I have discussed it and decided that if she says he can go with the Animas now or wait until a certain level before getting the Cozmo, we are going to wait. We don't want to use a pump we don't really like just because he might need those lower basal rates for a few months.
Tuesday, January 03, 2006
Also, just found out today in "Pumping Insulin" that most kids of Riley's weight are on a about 8 units of insulin per day ( NovoLog and Lantus combined) Well, Riley is only on 2 units of insulin per day. I don't know if it's honeymoon or if he's just sensitive to insulin. Either way from trying to figure an estimate of what his basal would be on a pump, we would have to go with the Animas. But, the endo. doesn't really want to do the pump until Riley is on at least a whole unit of Lantus. So, we'll see after we go to our pumping class on Thursday.
Monday, January 02, 2006
I guess it's important that most of his sugars are in range. But, he has at least one or two sugars everyday that are just out of whack. Is this normal? Am I expecting too much?
I don't want to bore you, but I wanted to give some examples of how his sugars have run the last few days. He currently takes Lantus 0.5 unit at breakfast. NovoLog 0.5 unit per 30g carbs. He is also on NovoLog correction for >225: 0.5 unit and >300: 1.0 unit. He doesn't take any NovoLog after 8 PM because his sugars drop so much during the night. For example, one night at bedtime, it was 312. (He didn't get any insulin, because it was after 8PM) At 1 AM, it was 261, at 6 AM: 96, and when he got up at 8 AM it was: 65. Yep, that's right, it dropped 247 points over night without any intervention. His range is supposed to be 80-150 pre-breakfast and 100-225 the rest of the day. OK, here it goes:
Fri, Dec. 30th:
6:51 AM: 130
8:24 AM: 124 (ate 30g carbs, got 0.5 unit of NovoLog and Lantus) (no snack before lunch)
12:38 PM: 134 (ate 28 g carbs, got 0.5 unit NovoLog) (had 10g snack at 2:00 PM)
3:48 PM: 75 (got another 10g snack)
6:19 PM: 241 (ate 41g of carbs, got 1.0 unit NovoLog [for carb coverage and high sugar])
9:10 PM: 212 (ate 15g snack)
10:17 PM: 319
Sat., Dec 31st:
8:23 AM : 148 (ate 31 g carbs, got 0.5 unit NovoLog and Lantus) ( no snack before lunch)
12:01 PM: 103 (ate 37g carbs, got 0.5 unit NovoLog) (got 9g snack at 3 :30 PM)
5:57 PM: 120 ( ate 30g carbs, got 0.5 unit NovoLog)
7:19 PM: 311 ( too early to give more insulin)
9:15 PM: 254 (16 g snack at 9:30 PM)
Sun, Jan 1st:
12:15 AM: 314 ( see how my New Year's started?)
6:04 AM: 223
8:33 AM: 146 (ate 38g carbs, got 0.5 unit NovoLog and Lantus)
11:13 AM: 324 ( no insulin because too early once again, got peanuts and Diet Coke. He gets VERY hungry and thirsty when his sugar is up. We were at church and Michael had to take him out because he couldn't sit still. Yet another side effect of high sugar.)
1:14 PM: 267 (ate 35g carbs, got NovoLog 1.0 unit)
4:31 PM: 63 ( drank yogurt[15g])
5:07 PM: 164
5:39 PM: 173 (ate 26g carbs, got 0.5 unit NovoLog[we decided to try 0.5 per 25g since his sugars have been up at night])
9:38 PM: 227 (ate 13g snack)
Monday, Jan. 2nd:
3:31 AM: 182
5:50 AM: 139
7:50 AM: 122 (ate 31g carbs, got 0.5 unit NovoLog and Lantus)
That brings us to the present. So, what do you think? Am I stressing for no reason? How perfect should I expect his sugars to be? The endo. has told me that "tight" control for kids his age is dangerous. But, that's why he has such a flexible range. His endo. also seems to think that if we could get his sugars up in the morning to justify a whole unit of Lantus, then the sugars may "even out" and "not bounce around so much". What do you think? I know that ultimately, I need to discuss all of this with the endo. But, I'm just wondering, is there anything to discuss?