I love you Mommy

So, I just can't take a break from blogging. So much is happening.  Everyday, I think I should blog about this. Due to my overwhelming urge to blog, I have decided to blog and work on the book in tandem. I also did not realize how many people were reading my blog until I announced I was taking a break.

This past Saturday, Tas pooped in the potty! He came up to me in my bathroom with his diaper in his hand and said "Mommy, I have to poop." I quickly picked him up and put him on our toilet. And, out the poop came! I told him how excited I was that he pooped on the potty and called Heath up to see. We made a big fuss about it and even called a few people to tell them. Tas was so proud.

The other significant event on Saturday was that we started Chance on Novalog. We did this becasue we were doing every other day site changes when we should be doing every three days. I had talked to a bunch of diabetics and another mother of a two year old who said there is no question this insulin is better - and they were right! Chance's numbers have been great since we switched and yesterday we were able to stretch his site change till this morning - making it three days! YAY! It is not fun doing every other day site changes - not for Chance and not for us.

We have found the Novalog to be faster acting and more effective hence causing us to reduce some of Chance's overnight basal levels by 10%. Overall, Chance is a happier camper.

Saturday night, we used our new sitter who is a type 1 diabetic. Her name is Melissa and she is wonderful. The boys loved her and it went well. Heath and I went out to Solas in Raleigh for dinner to further celebrate our one year diabetes anniversary. It really is a big deal that we all made it through our first year and have come out of it knowledgeable and in control.

This week has been a busy week at work - a good thing. I like being busy! Today, I was walking at lunch and crossed paths with John, a coworker whom I used to work with. I am embarrassed to say that I wasn't very nice to him - we just rubbed each other the wrog way. He is a diabetic and has been since he was young. I said hi and stopped him. I told him that my 2 year old son is a diabetic and that I had no idea what he was going through. And, that I was sorry if I wasn't nice to him. We ended up talking to him for a bit. He said the biggest thing is accept that sometimes Chance's numbers will be good and bad and this was just the way diabetes is.  I think I had come to this acceptance on my own, but great to hear from a long time diabetic.

The boys chattered all the way home in the carthis afternoon telling me about all kinds of stuff they did and wanted to do. We went "shopping" - one of their favorite pastimes - at Harris Teeter. Then, home for dinner. After dinner, Tas came running up to me in the bathroom and said he was pooping. He had started to poop in his pants but I put him on the potty and he pooped in the toilet. He asked me to go get Daddy so Heath could see. 

I did not tell Heath that Tas had already pooped in his pants a little because I did not want to spoil the moment. Tas was so proud of himself! Heath came in and made a big fuss.

Tonight, we reach a new milestone in our family - taking away Tas' pacie. It is funny how a baby transitions into a child. It sneaks up on you. Before you know it, your little baby has become a little boy. It seemed slow whie it was going by, but fast in retrospect. It is time for Tas to let go of his pacie.

At bedtime. I looked around for Tas' pacie becasue I was going to cut the tip off in the start of the weaning process, but I couldn't find it. Tas asked for his pacie and I told him that Baby Atticus had come and took it becasue it is for the little babies. Then, he said, the "train had taken it to Atticus". And I said, "sure the train took it". It wasn't my plan to go cold turkey, but that is what we did since I couldn't find it. Chance said he wanted to go to Atticus' house to get it for Tas. Later, I found the pacie under the sofa, which I put away.

While I was reading to the boys, Tas said "I love you Mommy" (the first time he has told me this) and I told him I loved him too. He then gave me a kiss and a hug. How sweet! These are the moments I want to capture in my mind so I can cherish them forever. One day, I will look back on the moment with a smile.

Chance couldn't have been happier at bedtime. And why shouldn't he be? He is on a new insulin that is making him feel even better.

My Blog

I am going to be taking a short break from writing my blog until October 30th, which is the date of the Walk for the Cure.

One of the items on my bucket list is to be a published author. The year that I got pregnant, I had a book deal in the works for me through SAS to write about the Casino industry, an area that I am very focused on at work. Then, I got pregnant with our boys and decided that the timing was not right for me to take on such an endevour. It would have put a lot of pressure on me after the boys were born to travel and promote my book at Gaming conferences globally and that was not my priority.

The goal for this first year blog was twofold - 1. update family and friends about our family advantures and 2. document our first year of dealing with diabetes. After doing this for a year, I have decided to take 6 weeks off to compile the content to be published most importantly for our boys. I want them to have something that can give them insight on this significant year of our lives. Something that will show them what their parents are made of and how surrounded by love they are by family and friends. Something for them to show their own children and look back on when they are older and we are all gone. I also plan to submit the manuscript to a few publishing houses hopefully with the help of JDRF. I believe the content of this first year blog could really benefit other newly diagnosed families.

As we start our second year of diabetes, we have made a decision to yet again give him the most leading edge care as possible. Today, we switched Chance over to a newer insulin called Novalog. It is supposed to be quicker acting and a more stable molecule making it a much better insulin for pumpers. We are hopeful that this new insulin will improve his care even more.

Until October 30th......

September 17, 2009

One year ago today, I was entertaining a business partner out at Prestonwood Country Club. I had an afternoon appointment to take Chance to see his pediatrician because I had noticed he was peeing and drinking a lot. I knew it was something that he should be checked out, but figured that it was not anything life threatening and that it should be OK to proceed with my business meeting.

Around 3:30 pm, I picked up Tas and Chance from their daycare class. Kathy, their teacher, was very concerned and said that Chance blew through his diapers all day, had even wet the sheets on his cot during his nap and was very lethargic. She had written down all the water he consumed and all the diapers she had changed. She said to me "in my 25 years of being a teacher that I have never seen anything like this" and she was right, she hadn't.

Heath thought I was nuts for taking Chance to the doctor. Chance had just gotten over hand, foot and mouth disease so he thought the excessive thrist was related to this. Carita and Marshall had just arrived in town for a 3 week visit.

I arrived at the pediatrician who is our friend Dr. Sherri and explained Chance's symptoms. She ordered a variety of tests including blood work and several other tests like for strep to try to find the culrpit of the thirst. She said it was very improbable it was diabetes that she had never seen a case at this age. She left the room and the nurse came in to run the tests. She did a finger prick. The meter registered HIGH, but she did not explain to me what this meant. Then, she left.

Dr. Sherri came back in and said all the tests were negative. I asked her what about the "HIGH" blood test and she said she would be right back. She came back in a few minutes later and told me Chance had to go to the hospital and that she had already called him into Big Wake. She told me to go directly there and not make any stops that this was a serious situation. I left in dispair and asked her to please locate Heath at work to let him know. I did make one stop to drop Tas home and leave him with Carita and Marshall since he was with us.

When I arrived at Big Wake, there was a nurse at the door waiting for me. She radioed to the staff in the ER that the "hyperglycemic toddler has arrived". I later learned that HIGH means over 500, but we never did get the actual reading of where he was at upon diagnosis. I believe it was in the high 500 range.

We went back into the emergency room and they immediately started taking more blood tests and hooked Chance up to an IV where they would begin insulin therapy to carefully and slowly bring down his blood sugar levels without crashing him. He was also dehydrated since his kidneys were on overdrive to flush out all the sugar in his system. Heath arrived and we were given the devastating news that Chance had type 1 diabetes. He would be insuin dependent for the rest of his life until a cure was found. Heath was completey distraught. I was in shock, but determined to keep it together for Chance and our family's sake. After a few hours, I suggested that Heath go home to get some sleep and he did.

All night long, every hour, nurses came in to do a blood test to check Chance's blood sugar and vitals. It was really awful becasue they kept trying to unsuccessfully insert a second IV in his other arm for a blood tap since they needed to take so much blood. They would pin him down and he would scream. I never left his side. I wanted him to know that we were in this together even though the nurses suggested I leave the room during the IV attempts. Doctors and nurses came in all night too to offer comforting words to me as a parent and offer advice.

Finally, around 4 am, I asked the nurses to stop trying for the second IV and they agreed. A young male nurse came in and suggested that we try having Chance sit on my lap for the blood test instead of pinning him down. Remarkably, this worked and he didn't cry. From then on, we did the test this way with no crying.

The next morning, Chance was downgraded from critical and was moved to a private room in the pediatric wing of Big Wake. A really nice room with great toys and staff for kids. They even brought a dog around to play with him. I was amazed by the care he received. Aunt Lala and Heath came up. Aunt Lala brought Froggie whom to this day is still a favorite snuggly for Chance.

Chance spent a few days in the hospital while we learned Chance's diabetes care. Heath and I rotated nights of staying there. We had the opportunity to meet Dr. Lagarde whom is Chance's current endocrinologist and plays a major role in his care. We were told that I had caught this very early before Chance's blood got too acidic and he became DKA, which is a very dangerous and life threatening situtation.

Then, just like when you bring a newborn home, we were told we could go home and were released to figure this out by ourselves with a 24 hour hotline to trained diabetes educators. It was really scary. I think scarier than when we first brought the boys home.

Only one year later, Chance is doing remarkably well and we have some serious hope for revolutionary new treatments and a cure in Chance's lifetime. Much more hope than even a year ago. Heath and I are extremely proud of how well Chance and Tas have adjusted to our new routine. We are also proud of ourselves for the superior care we have given Chance.

Tonight, we all (Tas and Chance too) went out with close friends and their kids to celebrate that Chance (and us) survivied our first year of diabetes. That we made it though and are thriving with this new normal.

Bandera and San Francisco

Well there couldn't be two more opposite places to visit - Bandera, TX and San Francisco, CA, but this is where I have been for the last two weeks.

The whole family traveled to Bandera to celebrate the magnificent event of Carita's 75th day of gracing this earth. After all the festivities, we had our own private celebration - a summit of Enchanted Rock. A one mile roundtrip up and back on slick rock with fabulous views of the hill country at the top. The boys, Carita, Heath and I partook in this activity. Carita and Chance were troopers and took the hike as if they did this every day. When we got to the top, there were pools of water from where Tropical Strom Hermine had depositied some rain. We took off the boys clothes except for their jerseys and they swam and frolicked. Oh to be 2 and so carefree!

Chance had the most positive attitude going up and back, saying "Mommy, I can do it!" for which I replied "Chance, everytime you summit a mountain you are looking diabetes in the face and defeating it." He was just over 400 when we stared and 71 when we got back down if that tells you the amount of effort to go up and back.

Some other highlights of our Bandera trip include a visit to Luckenbach to hear some awesome Texas music, live music by the Hales on Carita

and Marshall's front porch and at Mac and Ernies AND a visit to their very cool and ecletic home with the giant century plant and wonderful swimming hole, and the Labor Day Bandera festivities with the family.

Of course, Carita and Marshall couldn't have been more gracious hosts particularly all the food and Marshall cardboarding the do not touch items so we didn't have to send the week saying "no" every two seconds while the boys touched all Marshall's prized possessions.

Fast forward to this week. We returned on Saturday, September 11th and I jumped on a plane on Monday, September 13th. Honestly, I ran to the plane. It has been a long summer with two vivacious toddlers.

I went to San Fran for a west coast team meeting. I now have three folks out there or half my team. I stayed at a wonderful "green" boutique hotel called the Orchard Garden Hotel. There was a rooftop deck where we had drinks one evening. I spent time at Nordstrom, walking the Union Sqare area, working a bunch and went for some very nice dinners and lunches. A highlight was a group dinner at the "Slanted Door" down on the bay. The trip was a very nice break from home and was fantastic to have me and my west coast team together for two days. Definitely, a power summit of ideas.

Back home on the red-eye last night, and in the office today so I didn't miss a beat. Tonight, was tantrum city at home, then happy campers after a walk and a bath.

Giving Back

One of the positives that has come out of our last 11 months of dealing with diabetes has been the opportunity for Heath and I to give back to the diabetes community and strive for "the cure", which is now clear that we will see in Chance's lifetime. Yesterday, Heath and I were the family keynote speakers for the 2010 JDRF Triangle Chapter Walk Luncheon. We were asked to speak for 5-7 minutes to a group of about 350 people. Our dear friend Andy (Oskar's Mom) gave the research update in which she said "this is not a walk for a cure, it is a race for the finishline" - we are getting that close!


Heath and I did a tag team approach and decided to focus on the positives rather than the obvious negatives. I spoke about the past 11 months and the fact that we are approaching Chance's 1 year anniversary of being diagnosed, Heath spoke about the positives diabetes has brought into our lives, I spoke about how well Chance is doing almost a year into this, Heath spoke about how excited we are about all the research, and we wrapped up that we are hopeful for Chance's future that he will be free of this disease one day.

Of course, I got choked up when I first started talking. We projected a photo taken on our last vacation before Chance was diagnosed last August in the Smokey Mts. Photos of Chance pre-diabetes will forever bring tears to my eyes. I rehearsed without the photos and did not break down, but when I started to talk and looked at Chance's face, I could not help but fight back my tears. I did recover and was able to continue our talk. We also showed 2 recent photos to show how big he has gotten, and of course I didn't forget to mention Tas.

Afterward, several people came up to us to offer words of support and hope. Below is the note that JDRF sent to us yesterday afternoon. Short and sweet, this note meant more to us than Kelly could have known.

From: Fleming, Kelly [mailto:kfleming@jdrf.org]

Sent: Thursday, September 02, 2010 3:12 PM
To: Suzanne Clayton; Heath Clayton
Cc: Burleson, Lester

Subject: Thank You

Hi Heath and Suzanne,

Thank you very much for sharing your personal story with us today. Without question, this was a highlight of the program.

If I don’t talk to you before the holiday weekend ~ please have a great one and we will be sure to be in touch soon.
Talk soon,

Kelly