Confession Time...

I can't believe I am actually going to publicly say this out loud but here it goes. I don't keep food logs any more for Rose.  Yep that is right I stopped after our last endo appointment when we had an A1C of 6.6%.  Ever since then I can't stand them.  I wish I loved to do it, but I don't.  This would be fine but we have our 6 month diagnoses appointment with our endocrinologist and I have no logs to show for the last three months.  Whoops.  I need to do better, but sometimes it is hard enough at meal times to test and dose Rose, feed both of my kids, and try to eat myself before it gets cold.  Taking the extra step to write it down is so not appealing.  The good news is that our wonderful meter One Touch Verio IQ plugs into my computer and spits out these beautiful graphs.

We have some work to do.  So here is what I am thinking so we can keep Rose's A1C at 6.6%.  In the last month we were only below 65 one time.  It is the Red dot at the beginning.  Green dots are good which means she is with her range of 70- 250.  Her actual target Blood Glucose is 150.  But if I were to do a correction it would be less than a half a unit so we think anything under 250 is good.  We don't have to worry about her getting low but if we did anything above 70 is acceptable. Anything above 250 is considered high which are orange on the graph.  We have so many highs which means we need to tighten up with our diet and insulin. Our average BG was 197. We want it to be right around 150.

Alright so where do we go from here.  We are going to change her target BG to 120 during the day and 150 at night time.  I am really hesitant to change it to 150 at night because I don't want her to get so low at night that she needs a glucagon shot but we need to get her average BG down.  Here is another graph that shows us what time of the day she is usually high and low. After 6PM is when we need to make sure we are giving Rose more Insulin in her Basal dosage and maybe that might even be a good time for us to start walking so we can lower her BG before bedtime. Another time that might be a good time for some exercise would be around 10 AM in the morning.

Enough about the graphs and our struggle to be the perfect pancreas for Rose.  Here is our sound bite from our interview on the radio.  Rose was so excited to hear herself on the radio today.

JDRF

Ever since Rose was diagnosed almost seven months ago, we have been activily looking for other families that deal with T1D.  We have met so many wonderful families and I really hope that Rose knows that she is not alone in the fight. One of the best ways that we have been able to meet these families is through Juvenile Diabetes Research Foundation (JDRF). If you don't know a whole lot about JDRF here is some really cool information about this foundation that is trying to make type one into type none. JDRF's mission is to cure, treat, and prevent T1D.  JDRF is the world's leading funder of T1D research.  JDRF allocates 80% of its expenditures dierectly to research. Since it's inception in 1970, JDRF has allocated over $1.7 billion to T1D research.  JDRF also provides a network for families with T1D.  It is a pretty amazing foundation that we have been able to be apart of.  I am on the Committee for the Idaho Chapter and we get to help raise money and promote JDRF events here in Boise.

Boise has two major JDRF events that happen at the beginning of every year. The first one is the Starlight Snowshoe Event which by the way is this weekend.  have you gotten your tickets yet?  If not the online ticket sales ends tonight.  You can go here to get your tickets.

The Starlight Snowshoe Benefit is in its tenth year and was created by the Greenwood Ski Haus back in 2004.  Their is going to be a live band, a raffle, a dinner buffet, and of course snowshoeing.  It is March 1st 4:00PM- 9:00PM.

The second is the Walk for the Cure on May 3rd this year.  We have a team in honor of Rose and her second cousin.  I will be posting more about this later.  We are trying to raise $10,000 in their honor, so you will hear a lot about it.  Every penny helps, right?

We have also had the privilege of promoting the Starlight Snowshoe event which included getting up at 3:30AM to drive all the way across town to talk to our local weather man.  Rose was tired but she had a good time playing with other kids that are T1D. When I was uploading the picture I realized Rose and I were cut out.  Ha, way to go KTVB camera man.  Leave out the most important people.

 Then this morning we got to record ourselves talking about what T1D is on 94.9 FM The River.  I thought they were going to do it live in the studio today but our interview will actually be playing tomorrow at 7:35AM.  So tune in.  We love Ken and Misty.  They were so nice and completely understood how to talk to Rose.  Remember she is only three so it was pretty rough, but hopefully it works.  I will post her recording tomorrow after it airs. i should have taken a picture with them.  Oh well.  Ken and Misty you now have a new fan.

Two steps forward...

Two steps forward and four backward.  I feel like I am just drowning today in everything.  Rose's BG was at 500 last night again.  And this morning she was at 240.  She has some keytones in her urine and has just been an emotional wreck.  Everything is the end of the world and I swear she has spent the majority of the day crying.  Not to mention Mr. James is at the hardest age ever.  He is 20 months and into EVERYTHING.  When I saw everything I mean it.  He climbs everything and nothing is safe.  All of my drawers are emptied out and on my counters so he can't get to the stuff.  My kitchen chairs are in permanent lock down in my bedroom so he can't climb them and get the stuff on the counters.  He is fast too.  He keeps me on my toes that is for sure.

So beside my kids being at really hard ages today we have ran out of insertions for Rose.  We have been waiting for our new insurance to start but they are taking their sweet time. I have called them every business day for the last week to check on it.  It still isn't done.  They don't understand that I have a child that needs medication in order for her to live. I keep trying to tell them that but they don't care. With out our new insurance it means we can't order any new pump supplies.  Which means we are doing needle therapy again for her. We always have syringes and pens on hand in case her pump stops working.  Rose has been very devastated about it.  She does not want to have her Lantus shot in her bum.  (I should mention that all of the medication that we use for Rose are located in the Supplies tab on the top of our blog.)  But she is enjoying rough housing with James not pulling on her pump tubing all of the time.  He is a character and knows exactly how to push  all people's buttons.

With all of that said I have gotten the house fairly cleaned, watch two little girls, hot glued all of the broken toys, did all of the laundry and put it away, and now I have even blogged.  It has been a pretty successful day but I could go with out all of the drama with the diabetes crap.  Don't tell my endocrinologist, but I am so far behind on my logs it is embarrassing.  And we have an appointment next Tuesday.  I have a lot of work ahead of me this week. Even though the last couple weeks have been so hard with the diabetes we have been so blessed.  My husband has been so helpful always talking my hysterical calls about how high Rose's BG is, my sweet Grandmother in law dropped of dinner and flowers tonight, my mom listened to me cry because I was so frustrated with everything today and she calmed me down, and my sister gave me hope.  She is always good at helping me remember the eternal perspective of my trials.  She read me this beautiful quote that I want to share today...

"Sometimes we will face things for which there is no earthly explanation.
 In those moments we need to erect a sign that reads, 'Quiet: God is at Work'
 Meanwhile, hold on, Child of God.
Keep believing.
Don't quit.
Don't give up.
Let God do his work in you.
The greatest tragedy is to miss what God wants to teach us through our troubles."

Why did this happen to me? by Ray Pritchard.

Bad Insertion

We had out first bad insertion tonight. The pump actually told us that there was something wrong and that it was no longer going to deliver insulin to Rose. I am not sure how it knew but it did. Roses' pants must have gotten caught on the insertion and it kinked the cannula. When we took it off of Rose you could tell the insulin had just been dripping onto Rose's skin, not inside of her tissue. She was pretty upset that we had to change out the insertion but she did not want to have shots in her bum so she chose to get the insertion done. We always let her make the decision with how she wants to take care of her self. It allows her to feel some control over her own body. I checked her for keytones and she had trace so we gave her a little more insulin to help get those keytones out of her body. Her BG was at 455 at 9:00PM and by 10:00PM it was at 350. We know that the insertion is working because her BG is coming down instead of climbing. Hopefully the insertion won't get caught on her pants again. We moved the spot up but there are only so many places to poke her on her little tummy. She isn't quite ready for us to use her arms, thighs, or bum so we let her choose. Again it goes back to trying to give her some control over her body. She has very little she gets to control about her diabetes so whatever choices I can give her, I let her. I don't know how she ever became so brave but she gets shots like it is no big deal. Rose is so much braver than I could ever dream of being. She is my hero. In fact every child who is a T1D is my hero. I couldn't do want they have to do on a daily basis.

I just want to cry

Today is one of those days that when I see Rose with all of those bruises and sores all over her tiny belly I start crying. I hate having to hurt her and I hate that she has all of these sores on her tummy. It just kills me.

We are very blessed to have the pump but I am so worried about the long term effects of the insulin infusion sets in her tissue. I don't want it to create scar tissue everywhere I put an infusion set but she refuses to let us put it anywhere else but her tummy.

Today when we were changing out her insertion, I got to watch Rose's face as her dad stuck the needle into her. She didn't even flinch. She took a deep breath, closed her eyes, and counted 1..2..3...4...5...Then when he was done, she told me that she liked that insertion set a lot better than the others. It was no big deal to her. Not a single tear. Instead, I was the one who was crying. Why? Why, did my baby have to be the one to have diabetes. Why does my three year old have to even know what a carb, pancreas, or a keystone is? It is just plain sad. Today, I just want to cry that Rose has diabetes. I know that tomorrow will be better but today I am going to mourn the fact that she has this chronic disease that will never go away.

February

Seriously where has February gone?  We have been so busy around here and of course the blog always falls to the way side behind everything else we have been up to this month.  So sorry but sometimes I just can't do everything.  I tell my husband that all the time when he comes home to the house a disaster. Two little kids, a church calling, and volunteering for JDRF makes it really hard to accomplish all that I want to in a day. So here is a brief update on what we have been doing here.

We were able to go watch my second cousins kids one night while the parents took the two oldest kids to a concert.  It was the first time that the mom was able to go several hours with out having to take care of their T1D child.  My kids had so much fun with them.  I think it was great for Rose and "Jacob" too.  They compared Blood Glucose Meters, Insulin shoots, and BG levels.  It was so funny.  Plus it wasn't as bad as I thought it was going to be taking care of two T1D's.  Once you figure out how to care for one, the second is easy.   The kids played outside and watched TV together.  It really was a great night.  Here are some pictures from that night.

Jacob

I love this picture of Jacob playing with James.  They played with each other all night. 

This month we also got to watch my other cousin's daughter who is just younger than Rose.  They had a blast together.  they played together so well that it was nice to have a break from entertaining Rose.  The only time they fought was when they were discussing who had to be the prince.  It was settled pretty quickly when I told them that James was the prince.  Rose loves to explain to new people about her diabetes.  She has a book she pulls out and points to her pancreas and tells them hers doesn't work.  Well this particular day she was having a hard time describing why she was diabetic to her cousin, so I stepped in.  Luckily Rose's cousin has glasses.  I explained that the pump is much like a pair of glasses.  Not all bodies are created equal and sometimes our bodies need help to function properly.  Just like Rose's Cousin needs glasses to see, Rose needs her pump to eat.  Rose looked at me and I know for the first time in a long time she didn't feel so different.  

Let's see what else have we been up to.  Oh we got the opportunity to go down to Utah for my husbands work.  We saw Uncle Bryce, Temple Square, visited the Salt Lake Library (Which was amazing), and we got to hang out with Grandma Anderson there too.  Here are some pictures of our trip.  

Truman Angell was one of my ancestors. He did the architectural design for the Salt Lake Temple.

 This is Rose's "High" face.  We can always tell if her Blood Glucose is high or low depending on her mood.  This is her face of being high and crabby.  She also gets very mean and does not listen to anyone.

  We really have had a great month so far.  I have been doing a ton of work for JDRF and loving being able to connect to other families that struggle with T1D too.