Tuesday, March 29, 2011

The Break...

We took a break from pumping. I was so distressed about this. I thought I was doing such a huge disservice to Lily by taking her off of the latest and greatest technology. First we lost Dex and then the Omnipod. I have to say though...I am so happy we gave this to her. So happy. She is so happy.

I honestly cannot imagine what it would be like to have to wear something attached to your body every single second of every single day. The burden has got to be unreal. She has such a sense of freedom about her right now. She is so interested in the insulin pen and has been learning how to change the needles, prime it, twist the dial to the correct dose, etc. I know this will pass too and she will become bored with it and probably go back to pumping. And I will go with the flow. She has to have some sort of say in her body, I think. This is all just the opinion of one mommy of a type 1. I do what is best for US and US alone.

I am hoping that maybe she feels a little less different without having her "gadgets" screaming to people that she has something medical going on. Who knows. I am just happy to have given her the opportunity to have our version of a break.

And you can tell from this beautiful look on her face that she is all the happier for it! OH...and I mastered Mexican food tonight. She was 267 at dinner, gave her 3.5 units to cover 50 grams and she went to bed two hours later with a postprandial number of 124. Wahoo!

Friday, March 25, 2011

Newly Diagnosed...

When Lily was newly diagnosed with type 1 diabetes, our world was flopped upside down and sideways. Seriously. I knew nothing about the disease. I knew nothing about how to care for her. I was, and still do, have a pretty horrible fear of needles so it took an intervention from God to get me to stab one into first, her little fingers, and second, her skin. I remember going up to the patient library at the hospital and using their Internet. The first site I found was www.childrenwithdiabetes.com

I got on this site and found a ton of resourceful information on type 1 diabetes...what it is, how to cope, how to manage it, other organizations to look into, research updates, etc. So, I scanned through the site. It was there that I discovered the JDRF. I then went to their Houston site and I called Molly, the director. I told her our story and that I had been trying any other family in Houston to talk to. I was scared. I was in a new territory where I had no clue as how to educate myself on it.

Since then, I have used the Children with Diabetes website as a great resource in finding useful information. I found a lot of the blogs that I now read daily on the site. I have been to two of their conferences and both were truly amazing experiences. I got to meet some other bloggers that had been a source of comfort for me to read their writing...like Kerri at Six Until Me, Lee Ann at the Butter Compartment and Scott at Scott's Diabetes. These folks led me to the friends I have now that are parents of a PWD. I was able to meet the folks behind the CWD and wow...they sure know how to make us feel welcome into their family.

I now refer almost all of the newly diagnosed families I come in contact with to the CWD. You can find any bit of knowledge you need on one site. I would also encourage anyone who has not gone to one of their conferences to GO! It is an experience for the whole family that is like no other!

Living with diabetes daily is hard...and it's no joke...and it can be exhausting...but I have always said, the alternative of living without Lily is not option. I want to state for the record though that although diabetes is always present (especially when I work in the field I do), it is not our everything. It is our necessity. And that's okay...but it doesn't make it any easier!

Wednesday, March 23, 2011

The Surprise in the Gum...

Not much new on our front today. Abby has been sick as a dog...puking, fever, cramps, tummyache, and overall whiny, crappy attitude.  Poor little thing feels like poop. She has done nothing but sleep.

So, I am at the doctor's office, second day in a row, with her this morning and they swabbed her for strep. Abby hates getting this done. She and Eric had been practicing what to say to the nurse and when the nurse walks in with the swabs, Abby says "Can you please be gentle?" It was so cute. Then came the time to test and she blurted out, "Can you just swab my cheek and not my throat?" I started laughing. Not a good idea. She started crying. Ugh. So, I  promised her a piece of gum if she cooperated. She thought long and hard and decided she could survive the strep test. So, I reached into my purse and pulled out a pack of gum...and an insulin pen needle was hiding in there. Only a d mom would find the humor in this! :)

We leave the doctor and get home to packed house (we move in two weeks) and there is nowhere for Abby to lay down since I sold our furniture and bought new furniture that isn't ready yet. Poor thing found a little spot to sleep off her fever. Mother of the Year Award has my name all over it! LOL!

Yes, that is a pen needle in my gum. 

 All cuddled up with her Piggy.

Monday, March 21, 2011

Permanent Ink...

It is hard for me to articulate what I am feeling at this moment, but here goes.

The first time I thought of getting a tattoo, I was 19. I thought I would get a scorpion with roses wrapped around it since I am a Scorpio. Good thing I didn't because that really doesn't mean much to me. Several times throughout my adult life, I considered a tattoo. I never could come up with something that meant enough for me to have it put on my body in permanent ink. I am pretty OCD and I like things as quickly as I don't like them anymore. So, the thought of putting...say...an elephant ( yes, I had an elephant phase) on my body, was not appealing enough since I knew I would get over that little obsession. And I did.

When I got divorced, I started to rethink the tattoo. I wanted to get one. I had spent years saying I would never mark up my body because there was nothing I wanted bad enough to put on me. Well, things changed. I racked my brain trying to come up with something. Spent a couple of months scouring the Internet looking at tattoos. Nothing. Then, Hope Day came around. The entire DOC hosted a Hope Day for diabetes and everyone wrote Hope on their hands. It was this day that I knew I wanted a hope tattoo. The only thing that I want bad enough to print on me for life is a cure for my daughter...and everyone that lives with diabetes daily. I decided to make the "o" in hope the universal symbol for diabetes, a blue "O."

The word hope also means more to me . I hope for a bright future for my girls. I hope their health stays at least as healthy as it is now. I hope Abby doesn't get diabetes. I hope to have my dream come true of spending my days educating the public on the signs of type 1 so no more kids die from DKA and being misdiagnosed. I hope to be happy in this life.

This blog took a strange turn for a while as my life took a strange turn. I have chosen to keep my private life just that...private. I still blog about my hurdles, my life after the two D's (diabetes and divorce) and my love, Matt,  but...I now do that in a private place.

This is a place for me to educate...and to help...and to cope...and to hope that one day Lily, along with all of the other PWD's, can live a life free of diabetes. I hope they learn to know what a night with no fear and no checks is. I hope they can freely give birth to babies without fear of numbers...or worse, the fear of passing it on somehow. I hope that diabetes goes away. I really do. I want that for my child. I want that for all of the children and everyone who lives with this. As much as I love reading everyone's blogs, I hope to one day log in and not find them anymore.

So, this is all what led me to a tattoo. On a Sunday night, after dinner, by myself...I got in my car and drove into the heart of the artsy part of Houston, Montrose, and went on my own to get a tattoo. There was no hand to hold and there was no one there to support me. I wanted to do this for myself...by myself. That was important to me for some reason.

Wednesday, March 16, 2011

The Appointment...

All I can say is WOW. We took Lily to Denver to the Barbara Davis Center on Monday to be seen by the one and only diabetes guru, Dr. Peter Chase. If you aren't sure of who he is, he is the author of the Pink Panther books you are given upon diagnosis. He is also the Principal Investigator on the Artificial Pancreas Project. His lab also does the TrialNet research. He is the bomb...to put it mildly.

A little background: In December, for work, I went to tour the Barbara Davis Center. I had the opportunity to meet all of the doctors, nurses, CDE's, nutritionists and social workers. I also met the director of the lab (which was SO CSI cool...young kids all trendy running around with microscopes and petri dishes). I was blown away with the knowledge these people have and the best part? They all have a connection to type 1 so they really understand what we go through. They GET IT. Dr. Chase's stepson was diagnosed at age 5. He is now 40 and a VP in the TV biz. I sent Dr. Chase a personal email asking him if he would see Lily so we could get a second opinion. He graciously obliged and we were set to see him March 14th.

Fast forward to March 14th....

We show up at the BDC 20 minutes early because we were just a tad bit excited. They immediately showed us back to the room to get blood sugars drawn, etc. The guy that did this...wearing a pump. After that, we went to another room to have the dreaded A1C done. We were then brought into a room to wait for whoever was coming next (I had requested to see everyone and their mother since we live out of town...turns out they do this for first time patients anyway). At 10:05 Dr. Chase and Georgeanne, the nurse, come in and sit down. Was I still on Houston time or was he just ON TIME?? Holy Lord. We said our hellos, Lily stared at the floor and refused to look up, but was at least smiling...my shy child, and Dr. Chase and Georgeanne sat down with us at the little desk. All five of us, sitting down, talking. There was no rush. There was no looking at watches. It was us and them...one on one. They immediately dove into it all. Lily's A1C had gone down a whole point just about after starting shots again. That was a shocker. We are still trying to figure out if it's our awesome logging skills when you have no pump to rely on, or if it's the lypodystrophy she was experiencing from the Omnipod.

Dr. Chase spent 1.5 hours with us in this little room at this little table. Yes...you read that correctly. He answered every question, covered every subject, did everything you always dreamed a doctor would do. We were speechless...literally. When he was finished, we had no questions and nothing to add. Again, WOW. He is such a wealth of knowledge that we got all kinds of interesting little tidbits as well. Here are some of the notes I took:

  • Look into GAD trial for Abby (can prolong diabetes by 6-10 years if she has 2 out of 3 markers for being T1)
  • fast acting insulin peaks at 95 minutes
  • 43 degrees is the coolest insulin should be stored so use the door or the front of the shelf of the fridge. 86 degrees is the max.
  • bolus 20 minutes prior to meal unless under 100
  • a TRUE low, severe low, is 55 and under
  • the nonD person spends 10% of their day between 60-70
  • 75% of severe lows in kids are from exercise earlier in the day and happen at night
  • Think ahead if you will be exercising and reduce Lantus by 1/2 to 1 unit
  • NEVER go to bed under 130
  • Treat lows at this number with solids and not fluids
  • On sick days, go to ER if mouth is dry and there is labored breathing
  • No eye exams before 10 years old
  • Get cholesterol and lipids checked before age 10
  • 50% of teens have enlarged thyroid
  • SEVERE LOWS UNDER 55 can last for 2 hours and 25 minutes prior to seizures, unconsciousness, etc. studies show
  • If fiber on a label is over 5 grams, subtract HALF
  • When giving an injection, don't make a dimple in the skin...hold the needle in the cup of your hand without pressing it in too far. If pressed to far, can get in muscle and insulin doesn't work correctly
  • If using an insulin pen, prime the needle EVERY time you use it
So, that is it in a nutshell. The best part of this trip was the service. They were kind, understanding, attentive, not rushed and you felt as though they genuinely cared about the well-being of your little diabetic. We left with two books, articles, charts, graphs, etc. courtesy of Dr. Chase. It was truly the best experience EVER! And we plan to send Lily to their camp at age 10...that's the age he really recommends!

Thursday, March 10, 2011

Another Day...

UGH! I hate ducking fiabetes! I picked the girls up from school and took them for ice cream. We then drove out to my new house to show my sister and niece. We stopped for dinner on the way back and when I checked Lily...high 300's. I covered 30 grams for the damn ice cream. So, I corrected her and covered dinner. I also poked her too hard with the needle and got a bleeder. She was not happy with me. At all.

We got home and she was all mopey and grouchy. She started crying on the front porch because Abby looked at her. I knew something was up so I dragged her reluctantly into the kitchen to check her. 320. Had I not had another headache, I would have screamed. She had tons of insulin just an hour before! So, I gave her one unit and now I am sitting here staring at the clock waiting to check her again. So frustrating.

Meanwhile, Lily is wearing a pee pee alarm. Her number tends to get a bit higher at night at times, which results in excessive peeing...and she sleeps like a frigging rock so...she doesn't wake up. She is now 7 years old and should no longer be wearing a pull up to bed so we got her this nifty (freaking expensive) yellow alarm. She has been high the past three nights so has had an accident. Two nights ago, the alarm woke Abby and I up while Lily slept peacefully...in a puddle of pee. That is, until I woke her up.

The kid cannot catch a break!!! We are all up and down all night and playing musical beds. If I am tired, I am sure she is just exhausted!! Another day in the D life...fun, fun, fun!

Monday, March 7, 2011

The Meal Mommy...

The Meal Mommy explained...

After Lily was diagnosed with diabetes in Oct. 2007 at the age of 3, I quickly discovered that the only thing about diabetes that I had some control over was what she put in her mouth. So, I dived into the nutrition side of things and really researched how food affects blood sugars. I did seminars on the Glycemic Index. I attended seminars. I read books. I started cooking healthier than I had before. I became an expert on carb counting. While doing all of this, I had a system in place. I would make a grocery list that was broken up into sections of the grocery store (I am slightly OCD...so what): Produce, Refrigerated/Frozen, Shelved and Meat. This cut my time in the store in half and I never forgot anything!

So, I would sit down and plan out my meals for the week. I pulled all of the recipes I wanted and made the list. I then went through the fridge and pantry and added all other items I needed. Surprisingly, I totally cut down the cost of my bill and the amount of waste I had by doing this.

Once I started my Yahoo Group and starting talking to many other families living with type 1, I realized that one of the hardest things they were facing was what to feed their kids. Thus, Meal Mommy was born.

I started planning meals and sharing them on my website for the paying customers in the diabetes world. This was great for months but it was a ton of work and once I got divorced and went back to work full time, I could not keep up with all of the technical stuff. I still do the planning for my family and I use my own site to find recipes.

Now, Meal Mommy is back up and running but is a free service for anyone to use. There is an index of recipes that is broken down by the main ingredient or type of food. Each recipe has accurate carb counts and serving sizes. Each recipe has been tweaked to be healthy and easy to cook....and pretty decent on blood sugars!

So, check it out...and expect new recipes to keep coming in!


Wednesday, March 2, 2011

Hope Day!

I was sitting at work yesterday at lunch and a coworker noticed I had drawn all over my hand with marker. He said, "So, are ya getting henna tattoos now or what?" Nope. Yesterday was declared Hope Day by the DOC. We have been hoping for a cure for Lily and all other type 1 diabetics since October 7, 2007. Everyone in our diabetes community drew the word "Hope" on their hands and then decorated it.

I had forgotten to tell Lily about this very special day that morning. It got lost in the chaos of getting ready for school! So, I emailed a picture of my hand to her teacher and asked her teacher to let Lily participate. About 10 minutes later, I got a picture of Lily's hand and she, too, had written "Hope."

I was so touched to get another text from her first grade teacher that said "Now they all have hope!" and attached was a picture of the hands of her whole class. I was flabbergasted and excited! All I could think about was that she must have felt so special by this act of support from her friends!

When I picked her up from school she wanted to see my hand. She told me about her class all drawing their hands and in Lily's quiet way, she did feel very special.