Karma

Some people who do not know a lot about diabetes, think that it is a disease of inconvenience, but it is much more than this. For the parents of a diabetic child, it is a 24 hour-a-day commitment to keep your child alive.

Karma - it is said that while difficult to change your karma in this lifetime, it is possible to plant seeds for good karma, which may come to fruition by giving of oneself, living with good intention, and being kind and compassionate to others.

Last night, we attended the JDRF Hope Gala. Heath and Dan's photography was prominently displayed on easels as we entered the country club and walked down the hallway to where the event was being held. It was moving and put faces with why we were all there. I was glad it came together so well after all the work that went into creating these images. Dan was there shooting the event to which we are extremely grateful to him.

It was an wonderful evening and was all about people opening their wallets to raise $$ for a cure. When we walked in, we were asked to scan our credit cards so we could make donations and bid on items without having to exchange cash. We were then immediately asked to buy a $100 raffle ticket for a drawing at the end of the night, we declined, but then bought one shortly after.

The evening began with cocktails and a silent auction. Dr. Lagarde and his wife were there so it was a treat to see them. Then, we sat down for dinner and they did the living and giving award to the Hendron Family who donates boat loads of money every year to benefit their daughter Ruthie who got diabetes when she was 9. She is now in her twenties and living in NYC working for JDRF. Her father gave a very moving speech about how they were on quest not to have diabetes change their lives. Three days after diagnosis, Ruthie and her Dad did an Indian Princess trip taking with them all their new paraphernalia. After this, they did a live auction, where they auctioned off several large ticket items including a Pixar vacation in CA for $20K. All the while, they were doing a multimedia show of Heath and Dan's photos on two giant screens behind the stage.

Then, the real emotion kicked in. Andy Ivarsson made her speech about Oskar being diagnosed. They played the video that TWC had made of some of the new families talking about their experiences with diabetes. Our family was featured and I thought it came out really well. At the end of the video was a large photo of Chance wearing shorts, no shirt and his insulin pump. The audio was of me crying and saying that one day I will share with Chance the details of that first night in the hospital when he was diagnosed. At this point, Heath had tears in his eyes as did many people in the audience.

From here, they launched into a round of direct donations to research for the artificial pancreas. The donations went from $50,000 by CEO of Allscripts to $61 from every party in the room. At the end of this, the total funds raised for the evening totaled $616,000!

The final program item of the evening was the drawing for a one week trip to Hawaii - 100K miles on American, four nights at the Grand Wailea in Maui and three nights at the Four Seasons Resort in Lani (where Bill and Melinda Gates got married). They sold 150 tickets for this at a cost of $100 per ticket. They drew ticket number 47. A woman at the front center table stirred but then realized that she did not have the winning ticket. Then, no one else stood up.

Next thing I know, Heath looks down, opens the envelope with our ticket, and stands up holding ticket 47! I couldn't believe it! Heath had tears in his eyes from all the emotion of the evening and I was stunned that we just won a trip to Hawaii!

Several people came up to us and said how happy they were that we won. That it was good karma for all the work Heath put into the photography for the event and all our efforts with Chance over the last seven months. We were touched by their kindness.

The plan is for the four of us to take our good karma trip in 2011!

Photo credits on this post go to Dan Jahn who got lots of good karma on Saturday by photographing this event in the hopes that it would one day benefit research for Chance. Thank you Dan!

They"ll Always Be a Part of My Heart that is Broken

I found these shots of Chance in my camera last night when I was downloading the Shakori Hills photos. The irony of this is that tonight is the JDRF Hope Gala, at which we'll use the emotions of the newly diagnosed families to inspire wealthy business people in RTP to donate money to our cause.

I can't help but look at this picture and have an overwhelming stream of emotions hit me. Our little baby having to deal with such a serious illness at such a young age.

I am proud of our family with all the ups and downs we have had over the last 7 months. We have stuck together, stood behind Chance, and did what we thought was all the best things possible.

It is funny getting ready for an event like this. Normally, if we were going to a black tie event, we would be drinking wine before, loosening up and looking forward to a fun night out.

For me, this is very different. I know that even though Chance is doing really well, that there will always be a part of my heart that is broken for him and for our family.

There will be poster sized professionally mounted photos of Chance and all the other 2009 diagnosed kids thanks to my amazing husband Heath, our dear friend Dan and the generosity of CPA club.

The things I look forward to about tonight are: sitting at a table with other proud families that were willing to put themselves on display for a night; enjoying the stunning photography; and showing off my beautiful son to the community via photos so they all can see what a special boy he is.

My hope is that it will be a magical night. One filled with deep emotion. One that raises lots of money to help find a cure for diabetes.

Thank you and positive thoughts to our family at JDRF.

Shakori Hills Grassroots Festival

This year's Shakori  Hills was definitely the year of the two year old.

 

Tas and Chance enjoyed the full array of children's activities - face painting, Mother Goose band, sing-a-longs, the mosaic snake, the sand pile, gadget wall, kiddie tent, big field to run in, etc, etc. Heath and I spent much of the day chasing them around and periodically listening to some good music. My personal favorite was Scythian. They were a Celtic, rock, fusion band who rocked the dance tent like I have never seen before at Shakori Hills. Chance was absolutely adorable dancing during this music. He was running around, jumping up and down, and clapping his hands.We also enjoyed some good food and great weather considering previous years there have been very hot. We did a great job of monitoring Chance all day, did a Temp basal rate reduction of 50% and kept Chance in a good BG range all day - phew! The boys played and danced all day and did not nap. As a result, Tas expired around 7:30 during the Hackensaw Boys - one of "the" bands that we wanted to see today.

Heath was not happy about us having to leave in the middle of the Hackensaw Boys. He told Tas when he strapped him into his car seat that there would be no books when we got home. About 2 minutes later, both toddlers were snoring and out cold in their car seats. They stayed this way all the way home and into their cribs.  Heath and I are exhausted from all the activity. We bought a bunch of CDs, which Heath is downloading, then we'll be snoring too!

For me, I was smiling on the inside today, to watch how much the boys have changed since their first Shakori Hills when they were only three months old. It was so interesting to see them interact and engage with the world around them. I can only think this festival will get more fun as the boys get older and hopefully, we'll be able to see some of the later acts in the coming years.

A Perfect Day

One day into our pump changes from the CGM analysis and Chance was in range the entire day today starting at breakfast. His BG numbers were: 164, 190, 88, 122, and 134 - WOW!!!!!!!!!!!!!!! I do believe this was his best day ever.

Aunt LaLa came over tonight to see the punkins and so I could get out for some "me" time. Thanks Ladonna!

Tas was VERY disappointed that Uncle Cha didn't come too. However, we realized tonight that LaLa and Cha will be back on Saturday to sit for us while we go to the JDRF gala. I will let Tas know this tomorrow. Here is a shot just shortly after I told Tas that Uncle Cha wasn't coming. This was a reinactment. The original expression was worse. They love their Aunt LaLa and Uncle Cha and so do we!

I have nicely pedicured pigs and manicured hands tonight!

Mommies

We did an evaluation with the nurse today on Chance's CGM. Great news was that he had very consistent patterns. The nurse said she wanted to use his data as an example. We are increasing his nighttime basal rate since he is slightly trending up and could be a little lower at night, and increasing his breakfast and morning snack I:C ratio. Really the only time of day that Chance's numbers were high were from 8 am-1 pm. Not too bad and we should be able to correct this.

For the next few nights, we'll get up during the night to do the 3 am check. Then, hopefully back to sleeping.

Tas has a new noun, which I love. He calls flowers of any type "Mommies". I take this as a compliment and it really touches me every time he does this. Chance will chime in as well. Tonight, on our stroller walk they were pointing to all the flowers in bloom saying "Mommies". How sweet!

Tas also has a memory like an elephant. It amazes me the things he remembers. Two weekends ago, we hosted our neighbor Cole who was recently diagnosed with type 1 and his Mom for lunch. Tonight, Cole walked by and said, "Hi Tas and hi Chance", which was very nice. Keep in mind that we haven't mentioned his name since he was at our house. Tas turned around and said "Hi Cole". I was amazed!

Camp Clayton!

We hosted Camp Clayton, a family outdoor adventure from 4pm on Saturday until 1pm on Sunday. Great time had by all! Six families participated. At 4 pm, the campers arrived and pitched their tents. Our neighbor Steve let us use his back lawn since it is nice and grassy. Thanks Steve!

After this we had some free time for folks to kick back, get acquainted, kids to play on the swing set, etc. Then, we had a cookout dinner - burgers, dogs, baked beans and green bean casserole.
After dinner, the kids and Kyle played flashlight tag and we hung out around the fire pit and roasted marshmallows.

Tas and Chance had a fabulous time. Maybe too much because Chance was 47 at dinner, which is very low and not showing any symptoms. Around 9ish, we headed into the tent at Tas' request, "Tent Mommy".

Tas and Chance were having a good time in the tent, but definitely having a tough time settling down. The other younger campers were having some of the same issues.

Fredrik, Oskar and Gunner bailed around 10:30 pm and went home. After determining that Tas and Chance were too wound up and overtired, we put them in their cribs at 10:40 pm. A late night for them. Tas cried because he didn't want to leave the tent.

I ended up sleeping inside as well since Chance was low going into the night -  a 63 reading at 11:30. So it ended up that Max, their little buddy from daycare, was the only toddler who slept outside and slept well at that! Because of this, I gave Max the MVP of Camp Clayton award on Sunday morning. I don't think we could have found a cuter MVP!

On Sunday, everyone woke around 8 am. I brought Max into their nursery to wake up the and it was very sweet how excited they all were to see each other.We quickly got the hot beverages on since it had gone down to 43 the night before, so there was a definite nip in the air. Just like camping in the mountains! We had bacon, eggs, biscuits, and fresh fruit around the camp fire.

Folks played kick the can, chatted and I took some photos, something I don't find much time to do these days. The boys played hard and enjoyed every moment.
At noon, we had peanut butter and jelly sandwiches and more fruit. Everyone said that we should do it again next year. It really was a unique experience. Next year, we'll use Benedryl. :)

Here is our group photo. All 2010 attendees, get an automatic invite for 2011.

If you can believe, after all this, I co-hosted a baby shower for DeDe on Sunday afternoon. Good time here too. I got to kick back and enjoy some wine and conversation with great friends.

Happy Friday

So after a week of Tas being in the new daycare class with Chance, the punkins are getting back to their more pleasant selves. We're still having some meltdowns, but if we ignore them, it stops. It is almost like a light switch - the can turn it on and off pretty quickly. Unfortunately for the punkins, this makes the crying very transparent and is less effective on making Mommy upset.

Chance has worn his CGM all week with little protest, though I'll be happy to remove the device from him tomorrow. I am sure he will be happy as well. The results will be interpreted on Monday.

Good week overall. A highlight was going to dinner with our dear friends Ed and Kim. They treated us to dinner at Maximillian's to thank us for some of the help we have given Ed in his career at SAS, which we were more than happy to do. It was a lovely evening and great to get out! Thanks Ed and Kim!

Tonight, we did a large food shop. We are hosting 25 people for Camp Clayton this weekend. It starts at 4 pm tomorrow and ends at 1 pm on Sunday. We'll all camp out, enjoy the fire pit, do an outdoor movie and other activities. Plus lots of eating!

Happy Friday!!

Temper Tantrum Tuesday

We are deep into the terrible twos, temper tantrums, sibling rivalry, the full catastrophe. The diabetes is easy to manage compared to this. I believe some of today's melt downs are due to the fact that after being held back for a month, Tas is finally transitioning into Chance's daycare class. Chance moved first into the two year old class so the teachers could get used to his diabetes routine. This was definitely not in Tas' best interest and causing some resentful behavior, which seems beyond Tas' control. Tas was inconsolable tonight as I tried to divert my attention from him to Chance so I could get them both washed and ready for bed.

I guess with parenting it is always going to be something so as Heath says, I better "toughen up". This does not come easily to me as I am a sensitive soul and a recovering Catholic always plagued by guilt.

If any of my fellow parents have advice or tips for surviving the terrible twos with two boys, I am all ears. I have already been advised to drink, which I try to do every day. :)

Best Monday Ever

Chance had his 6 months diabetes appointment yesterday. His A1C dropped to 8.6, which is just about at his target of 8.5. This is a big improvement and we are very happy about this as was Dr. Lagarde! His A1C at diagnosis was 9.5 and it was 9.3 at his 3 month appointment. Dr. Lagarde said that we had moderate control over his diabetes (what we want), and that we could cut back on the 3am checks, which means we can sleep again – YAY! His new target BG range is 80-200.

 

They also put a diagnostic CGM (Continuous Glucose Monitor) on Chance that he’ll wear until Saturday. The CGM works like a pump site except there is an electrode under his skin tracking his blood glucose patterns (ups and downs). This data will be interpreted for us next Monday, which will assist the doctor in fine tuning his basal rates. 

What also made it the best Monday ever was that our friends John and DeDe's baby Atticus came home yesterday ahead of schedule after being born seven weeks premature.

Last night, both Heath and I slept through the night. The first time in over a month.

For more info on what A1C is and what it means:  http://www.mayoclinic.com/health/a1c-test/MY00142

We Don't Give a Crap About the Diabetes

Last night, Heath and I went to see David Gray at the DPAC in Durham - great show and a fantastic venue. Awesome acoustics! During the show, Heath leaned over and said "you know, I really don't give a f_ _ k about us having to deal with Chance having diabetes, it's OK". The irony of this statement is that I came to the same realization about two days ago about the same time Heath did.

Let me clarify here - we love Chance and care deeply about managing his diabetes to the best of our ability. However, diabetes hasn't broken us, we are all OK (especially Chance), it is part of who Chance is now and we don't give a crap if we have to deal with it until we depart this beautiful earth. The Claytons are survivors, we take life and all its challenges with stride and diabetes will not change this.

The second interesting exchange during the show was that I said, "I am easy to please". Heath responded, "when you are not impossible to please". This made us both laugh. If we couldn't laugh, we would all go insane.

Downtown Durham has really changed - very hip. We met Jim and Holly before the show at Revolution - a very swanky restaurant on West Main Street. From here, we walked to the DPAC. It is very cool what they have done with the whole downtown, DPAC and Durham Bull Stadium area. After the show, we met a few friends at Whiskeys. Our friend Barry bought a building on W. Main Street so he gave us a tour of his totally industrial and chic loft that he renovated and furnished in the building. He definitely should have Southern Living photograph and publish a story about his place. If it was in NYC, it would be worth millions.

Today, we did a "Just Ducky" art class. Chance really gets into the art project thing, Tas just wants to run around the class and explore all the boxes of supplies, open cabinets, and use the hairdryer upside down. I removed Tas about 35 mins into the class for being disruptive to the other artists. We went and sat in the car while Chance finished his project. After this experience, I decided that Chance and Mommy will continue to do the classes, while Tas takes on another activity with Dad.

Tonight, we drove back up to Durham to do a game night at Jim and Holly's. We brought the punkins who had a great time, but were into everything of Griff's and the rest of the stuff at their home. When we left, we had a huge mess to clean up, which we did. Jim and Holly were very gracious about the mess.

It feels like 12am, I am really tired from the two days activities plus last night, I was on the 3am blood test duty - tonight I get to sleep - yay!

Back On Track

Chance is the little engine that could and Tas is his faithful companion. After a weekend of wacky blood glucose readings, we are back to more regular numbers this week. We did a complete site change Monday, which seemed to help. Someone asked me today, "how do you know if a site is bad?" Interestingly enough, you really don't until you get a BG reading of 500. Often, there are no external indicators.

Tonight, I spoke to our neighbor who's son was recently diagnosed. They are going to come over on Sunday to meet Chance and see his cool pump routine.

It is officially Friday (TGIF!) and today will be Tas' last full day in his 1 year old daycare class. He will finally move up and be with Chance on Monday. Chance was asking for Tas in his class today. The teachers added a clothing bin for Tas in Chance's class with Tas' name on it. Chance recognized this and now points to it and says Tas. The other day they were singing the ABCs in class. I don't think I sang my ABCs until I was in kindergarten - just amazing!

Heath and I are going to see David Gray in Durham with our good friends Jim and Holly tomorrow and will enjoy a swanky dinner before. It seems like it has been a while since we had a big date night so looking forward to this!

Mom and I booked a trip this week to go the Omega Institute in June to see the author Maryanne Williamson for a weekend. This will be my first personal trip away from home without Heath and the kids and be a much needed break from the Clayton household chaos.

Happy Friday!!!!

48 Hours of Ups and Downs

Today, we hosted a neighborhood Easter egg hunt gathering with about 30 or so adults and kids. This was a first for us and was an "up". We have done Halloween and other holidays, but never an Easter egg hunt. This ended up being a totally delightful afternoon and evening for us and our wonderful sons. We had a great mix of neighbors and close friends. Tas and Chance had their own little hunting area and the other kids had DOZENS of eggs to hunt for. After the hunt, we cooked up burgers and dogs. Everyone brought yummy sides so we had a delicious feast! The kids played on the swing set and all around the yard. Good time had by all!

Another up, is that our dear friends John and DeDe had a baby boy yesterday! We are totally excited about this! Our sons can grow up together and we can do cool boy stuff together. I went to visit DeDe today. She looked fantastic. Atticus DeMolli is in the NICU for a few weeks so I was not able to meet him, but I saw photos - very cute! This morning, I asked Tas what was in DeDe's belly last time he saw her? He said, "a baby". I said very good Tasman and then told him that DeDe had her baby yesterday. At this news, he had a big smile on his face.

So the craziness going on amidst all this positive energy are some very erratic glucose readings for Chance. Numbers we have not seen in the entire 6 months since he has been diagnosed. It all started yesterday at 4 am. When I did Chance's middle of the night blood test, the pump was beeping that the battery was low. Since it is really complicated to change the battery, I thought the pump would last a few more hours, and I decided that I would change it in the morning. I was wrong.

When I checked Chance at 7 am, his battery had died and the pump had shut off. His blood sugar was around 224. We did a battery change and a site change, bolused Chance, fed him breakfast, bolused him again and sent him off to school. By lunchtime he was over 500.

This is an indication that the site is bad. Heath gave Chance needle injections for his high blood sugar and his carb bolus. Heath changed his site and by 3:30, Chance was 45, which is low. He ate a snack and by dinner, he was 68. Then, at bedtime, he was in the 200s and overnight 400s! Heath corrected him and he dropped to the 200s by morning. By lunchtime today, Chance was in the 400s again!

We called the emergency nurse line and left a message. Chance did not have keytones - a good thing. The nurse really didn't have a lot of insight. Prior to the yesterday, Chance had good, moderate control without these extreme swings. We hope to get him back to that point. It is really common for a low to proceed a high and visa versa, which we have been experiencing. One thing that is key with diabetes, is not to panic and to know that hopefully the bad numbers will pass.

One other up I will mention to close on a positive note. I went to a great Rex pump support group meeting on Thursday. Richard, the person who runs these meetings, had his son who is in college there. I have heard so much about Paul so it was really nice to meet him.  The topic of the meeting was how to deal with planned and unplanned hospital visits. It was very insightful. I feel like I am more prepared now, if we are faced with a hospital visit.

As for Easter, we'll have a nice family breakfast. The boys will get out and enjoy the spectacular weather we are having. Then, Heath is going to make a Greek leg of lamb dinner, which we will enjoy and he will drop off with John and DeDe. After all, life and holidays are really more about giving than receiving.

Happy Easter all!