Thursday, September 18, 2008

Why are you testing me?

I really feel like my ability to handle stress and difficulties is being tested these days. I kid you not, every minute my day seems to get more and more complicated. I can't even use a computer without it shutting down or being so slow I might as well hand write everything. The printer at work gets jammed, only when I touch it. My Vacuum at home exploded on me, the dog ate my last pair of flip flops, the video I have been working on for weeks is blurry when I uploaded it, and the song I worked hours to get right wouldn't play. I can't get out of bed without something instantly testing me, like spilling my last bit of coffee grounds all over the floor as I did today. Every few minutes I just make a big SIGH of "ARE YOU KIDDING ME!!?? Really.....seriously.....I am having one of THOSE months!

After work yesterday I sat down for 2 hours reviewing Maddison's blood sugar log. I uploaded her meter to the Copilot software program. I was sickened by the erratic ups and downs that were seen graphed on the screen. I refused to go back as far as an entire month, I focused on the last two weeks. It is actually alot better than I thought, but seeing the blood sugars in a line graph over a day made me feel so shocked that we experience these extremes throughout every day. Well, Maddison does anyway. Her daily average, 168. Percentage in range, 52%!!! AHHHHH! On a better note, I was amazed to see my percentage in range at 74% and average of 128. Now I just wish I could see that same result with Maddison. In reality, I know that is nearly impossible for kids. Then, as I was saying about the testing me, my laptop died and threw me out. Imagine that!

I woke up this morning feeling very optimistic about the changes I made in Maddison's pump for today's numbers. I felt energetic (instead of depressed) for the first time in a long time when I woke up, even with my last bit of coffee spilled all over the floor. I set out to start over today. Forget Josh's employment stress, forget that COBRA is killing us. Forget about Maddison's struggles in class and try to leave that up to the school for now. Forget about it all! I just wanted to get to my boring desk job, be productive for a change, finish my day and come home to my girls. But, as always my blog suddenly turns sour. (I am really trying to have this be a happy place to blog!!)

The school nurse called at 8:30am, Maddison is 53. No big deal. Treat it. Back to class at 158. An hour later she is 33!!!!!!!!!!!!!! (which would be 3 hours post prandial) WHAT!!!????? I just thought I had mornings in a much better place!!Did I mention today is early release for school in an hour? So the nurse tells me Maddison will still have to have a snack on early release days to avoid lows. WELL! ACTUALLY she will just have to have something changed SOMEWHERE in her pump to have this NOT happen! It isn't about missing a snack lady! So after treating the low they gave her 30c of a snack and bolused accordingly. Now, I sit here at work knowing how her day is trending and freaking out that she will soon be getting on the bus with her sister to come home. What if she has another terrible low on the bus??!! Not to mention, Great Grandma (bless her heart) who is supposed to be getting them from the bus is running late at the funeral home (picking up Grandpa's ashes!)and won't be there in time to be with them. I know in my mind that they should be fine, but Mommy nerves say otherwise. Mommy nerves at 30 miles away says "Stop them from getting on the bus!!" So, thank you for Aunt Christi who works nearby. She saves my sanity and picks them up from school for me so I can actually finish a day uninterupted. Now they are going to lunch, and I am so relieved they are with an adult!

I believe I am really, honestly being tested here people! I'm doing alot of deep breathing to stop myself from losing it. You know the days. The days you feel like you just can't take another day of constant irritations. -Sigh- Tomorrow, will be a better day. Really.

Wednesday, September 17, 2008

Monday, September 15, 2008

So much happening

The past two weeks have flown by, and I am still not sure what is happening day to day. We are still having computer issues, Internet....whatever it is. I have been too busy to take the time to disconnect everything and take them in for help. I hate getting online and being thrown out in the middle of my work!

Maddison is still up, down and all around. She is doing very well and is "stable" overnight, and good on weekends. Send the girl to school and you don't know what to expect. It really is driving me crazy. I can tell you her teacher is the start of a huge problem. Maddison has cried several times after school because her teacher has embarrassed her in front of the class by repeatedly "nagging" at her to "focus" and "hurry up" to catch up and complete her work. Maddison has been going to the nurse feeling low, but is actually high. For a whole week she visited the nurse about 5 times a day. So, her teacher would ask Maddison when she returned what her blood sugar was in front of everyone. Then she began taking away Maddison's "green card" if she was not finishing her class work due to being in the nurse's office too frequently. This teachers overall personality is pretty bland. She isn't able to relate or show emotion to the kids, and she is very sarcastic. I can tell she thinks that Diabetes is a simple "food" disease by comments she has made. I am entirely frustrated hearing about Maddison's day when she comes home from school. I think she is so stressed out in that classroom that her blood sugars are entirely effected. I have met with the nurse and school Psychologist about all my concerns so the teacher has been spoken to for now. I just think we will have problems all year with this teacher. We have a meeting scheduled to go over all Maddison's Special testing that has been completed and we will pretty much all have a good sit down to review everything with everyone at the school.

Wednesday the school nurse called me on my way to work at 8:30 am, yes, school starts at 8am. She said Maddison had a stomach ache (which is normal for her) and a slight fever of I go to pick her up from school. No work for me. Funny she looks fine, and doesn't feel hot AT ALL, clammy if anything! So I brought her home. Three different thermometers read 98.6 or under. Interesting. I honestly feel that she didn't want to deal with Maddison that day. I called the nurse and asked if she gave her Tylenol. Nope. I told her that she doesn't have a fever at all according to my readings. I voiced my concern that she was again missing school (the 4th day this year!) She suggested I have a rapid strep test done (because Hannah had strep the week before) and said I can bring her back to school if her fever is gone. WHAT!? Hmmmmmm......sounds weird to me. But, with so much going on, I let it go, added it to my list of concerns and went on with my day very much disgusted with how this year is going for Maddison.

So then I get the call that Josh's Grandfather was suddenly struck with a fever and very ill. He has been in a beautiful group home since July. He has a progressive brain disease that over the last 4 years has left him unable to care for himself. His beautiful wife of 59 years has been caring for his every daily need since then. When it became too much and he began to lose the ability to walk and stand they moved here to Phoenix from Montana and found a home here with their daughter who is an RN. Best part? They moved right across the street from us in our cul-de-sac. Between Josh, me, Grandma and their daughter, we were able to help care for him and avoid putting him in a care home. Hannah is his best buddy. Although he lost the ability to speak, he always mumbled something for Hannah. We helped put him to bed each night, bathed him, made dinners, kept him company. We are very lucky to have been able to help care for him comfortably in his own home for so long being the progressive state. Just 3 days prior we all celebrated their 59th wedding anniversary. Hannah fed him his cake. He looked good, we laughed, and had no idea how quickly things would turn.

As the day went on, I had many phone updates on Grandpa. I was told that Hannah and Maddison may be scared to come and see him in this state of health. No one thought it was a good idea for me to bring them to see Grandpa. Although his eyes were partially opened, he no longer responded to anything and couldn't move. With a high fever and excessive fluid in his lungs Hospice provided comfort care. The family came to his bedside. Hannah and Maddison decided they wanted to see him. I went into Grandpa's room first to make sure this was a vision that wouldn't haunt the girls when they remember Grandpa. I thought there was no way he would make it through the night, but he did. It is amazing how the body fights. I kept the girls home from school on Thursday because we cried so much the earlier night. We did alot of talking about life, about Grandpa, and how we knew Grandpa would be going to heaven. Maddison said she knows Grandpa's heaven has lots of chocolate chip cookies. We always made cookies for Grandpa. Thursday morning the Pastor came and spoke Grandpa's last words, and renewed the wedding vows. And then, tears came from Grandpa's eyes. No response otherwise. He was there, and he knew. Amazingly, family made it to Grandpa's bedside from Montana. Within minutes, he stopped breathing.
9-11-2008 has a yet another meaning in this family. Grandpa went to heaven with the comfort of his family surrounding him. He was 81.

Well, it is taking me days to finish this blog post. Our lives have been spinning in a whirlwind of commotion the last few weeks. I have so much to say, and no emotion left at the end of the day to express any of it. I feel completely overwhelmed and frustrated with so many things. Words aren't coming easy. So instead of finishing all I wanted to say I will post our finally completed video for the 2008 JDRF walk.........No background music, which is a whole 'nother story. At this point I just gave up completing it how I wanted. I don't have the time or energy (or patience!) to mess with it any longer. Hopefully soon I will have my sanity back.

Thursday, September 4, 2008

Basal culprit

Maddison stayed home from school this morning so I could do some basal testing. I just couldn't adjust one more thing like a shot in the dark and send Maddison off to school as my little lab rat. I had to see exactly where the change was needed. Basal test confirmed. 5am to 9am basal increments are far too high! We need to switch back to lower doses, exactly where we were 4 weeks ago before all the highs started. WHEW! I was so relieved to see the answer there staring back at me on her meter screen today. Now I feel like I can carry on with life, trusting tomorrow to be a much better day without the dreaded morning lows. I can see the light at the end of the tunnel and it is approaching fast!

I stayed up until 1 this morning working on our JDRF walk video for this year. I had to check some of Maddison's overnight basal's anyway so I made myself useful. I have been putting off everything lately. Mental exhaustion. So today I paid for my lack of sleep that's for sure, it was clear in my numbers that I did myself in. In my 5 hours of sleep I managed to stumble from bed to check Maddison at 2:30am and 5am. She was "perfect" all night. I MUST HAVE a good nights sleep tonight so I am getting to bed early and ignoring all chores that have not been done :) Hopefully by the end of the weekend I will have our video done and we will be bringing in the team walkers! Just 56 days left until the walk! I better get myself busy......

Tuesday, September 2, 2008


I hate computers. As much as I am addicted to the internet, I hate computers! I am completely computer dumb when it comes to trying to troubleshoot them. My laptop is having "driver" issues and refuses to connect to the internet. The computer in Hannah's room appears to have crashed entirely affected by a virus. It shuts down out of the blue repeatedly and won't read the USB cable to upload pictures! I have been waiting to update my blog from my last post with pictures from Maddison's Birthday party which was great by the way! So for now, I don't have pictures to post from the party. I will just have to suck it up and take both the damn computers in. Boy, was I so mad at those computers the other day.... Maddison finally told me to "chill out" and that I was making HER mad just from listening to me scream at them. Computers are right up there with Diabetes as far as being frustrating!

Maddison is FINALLY doing great overnight but needs some minor basal changes somewhere around 7pm. I think I have that figured out after last nights lows though. Hallelujiah! I was starting to feel completely incapable of figureing out anything. If the basal's aren't right, NOTHING will be right thats for sure. She is still stuck with an increase of 150% for basal right now. Funny how illness kills off any reamining beta cells! We are working a bit with her ratio for breakfast and snack time at school. She was having some lows after I adjusted those for she is having lows, go figure.

The other day Maddison told me that I "baby" her too much. I agree! She doesn't want me brushing her hair for her anymore. That's a hard one since I am hair freak and connot stand messy hair. But, I hear ya! Back off mom. It is just hair! My 8 year old is officially telling me to let go more and more. Got it, now if I can convince her she needs to sleep in her own bed we will be set.

Unfortunately Maddison isn't doing so well with her Diabetes responsibilites. She confessed to sneaking goldfish crackers several times before bed. That stems from me being a food naitze and cutting off eating after 6pm. (during the school week)I have to rethink that for a growing and hungry girl I guess. Maddison is also refusing to have anything to do with her pump. She won't bolus when I ask her to, so I am simply taking that over. She also wants me to do all her finger pokes. No big deal for now I guess. I will give her the break she is asking for. I know I would like someone to just pop in and manage my everything for a change. I guess I can't blame her there, but you can bet we will be working on figureing out why she feels this way right now. I am a huge believer in parents not expecting "too much" as far as self care when your young child has Diabetes. Very controversial, I know. Two words. Burn out. I don't want my 8yr old being burned out and I dont want her being irresponsible either. Fine line. Many years ahead. She has YEARS to do these things every day. Back to school stress I think is the main culprit. When things settle down we will work to get her back to where she should be.