Happy 9th Birthday, Sain! (one day early)

Sáin,

Happy birthday to the most amazing girl I know.

It’s hard to put into words what I want to say to you. In so many ways you are my hero.

In nine years you have lived through and seen more than many adults. You’ve taken all the things that could’ve broken you and turned them around to make you stronger.

When people talk about strength, resilience and perseverance you are the first person that comes to my mind.

Here are just a few of the lesser known things I love about you:

• I love that, even though we were watching an NFL special on TV, you were born during an NHL commercial.
• I love that your first word was “booger”
• I love the fact that you were genuinely confused by the fact that all people didn’t speak French when you started preschool.
• I love that you whispered to me in the hospital bed literally hours after diagnosis, “Well, I guess I have a lot to learn about diabetes now.”
• I love that you try new things but aren’t afraid to admit when you don’t like them
• I love that you can genuinely keep a secret
• I love the determined smile on your face when you are doing martial arts.
• I love that you are a “tall kid” (because I was the “short kid”.)

Mostly, I love that you are you!

Thank you for being my daughter and thank you for teaching me the best things in life are unplanned!

Love,

Mom

Pictures are better than words sometimes

education

The thing they don't teach you in the hospital is how to deal with ignorance. And trust me, there is plenty of ignorance when it comes to this disease.

When Sain was first diagnosed I didn't do too well with educating people -- I was too busy educating myself. As time progressed I got better. I was able to calmly tell them the difference between type 1 and type 2 and was even able to handle the "My (insert elderly relative here) was just diagnosed with the same disease" comments.

I have to admit that I've taken a turn for the worse in my education ability recently. Maybe it's the idiot telling me to shut up when I was explaining Sain's CGM to another mother or maybe it's people not knowing the difference between JDRF and the ADA and assuming they are supporting the same cause. Whatever it is (most likely a temper and lack of sleep) I can't handle the ignorant comments anymore.

I am tired of educating people. No, that's actually not true. I am tired of people not asking and assuming they know things they don't. For God's sake, just ask. I will answer anything and I promise not to yell.

APPLES!

Sain is selling apples to help pay for Camp Leo - 2009.

If you would like to buy some, please see the information below. (Orders are due by the end of September and we will be delivering them to you in October.)

Thank you!

It's Here!

So, it’s here.

Almost 150 days after I started the fight it's here.

All we need now is the training and we’re good to go.

I know CGMs aren’t a miracle cure and I know that in many ways this will involve much more work but I promised my daughter I would do everything I can to help her stay healthy and this will help. I won’t lie and say I’ve never broken a promise but I don’t break promises to my kids.

I am still angry with Premera for the multiple denials and I am disappointed in the way some other important people in our diabetes care responded to the whole fight but right now that doesn’t matter. I am thankful for Aetna approving the device (without any appeals) and I am thankful for the fighting spirit I inherited.

My two hopes are these:
I hope Sáin’s numbers get better. It sounds odd saying that since her numbers have been pretty decent the last couple of weeks but “decent” still puts her at risk for complications and “decent” is not what I strive for.

Secondly, I hope in some small way my battle breaks down a few doors for others. Denying people medically necessary devices is obscene. If my fight helps even one other person it is all worth it.

One a very different note I want to say a BIG congratulations to Kate and John on finding out “Baby Kate & John” (as Aidan calls him) is a boy! He’s one lucky little boy and we can’t wait to meet him in January!

Guess What?

Aetna is saying they will pay for Sain's CGM!! I almost don't know what to do!

It's like Christmas and my birthday all wrapped into one!

Four unrelated happenings

#1 It’s been over two weeks since school started and I’ve had ZERO high blood sugar calls and only one low. I don’t know what else to say about this – it’s amazing!

#2 Saturday I received notice that Premera rejected our third and final appeal for Sáin’s CGM. Even though I was expecting the rejection, I was still disappointed. There isn’t much I can say about the fine folks at Premera (note the sarcasm) that I haven’t already said. I hope Aetna is a bit more progressive. (Still no word from Aetna – sadly, I don’t expect a lot from health insurance companies these days.)

#3 Seeing a flying side kick done by a black belt in person is probably the coolest thing I’ve seen in years. (The instructor demonstrated one for Aidan’s class on Saturday.) Anyone who knows me knows that it takes a lot to impress me… I tend not to be impressed with the usual money, status, material goods, etc. that impress most people. Don’t get me wrong, money, status, material good, etc. are all nice things but having the discipline to train and get your body to do something like that is way more impressive in my opinion.

#4 Last night Sáin finished her “all about me” poster for school. In one of the sections she had to tell a unique fact about herself. Sáin colored the section and was very proud of it. When she showed me I was very proud of myself for not laughing… her box looked exactly like the Molson “I AM CANADIAN” ads.

Update on Gloria

Here's the email her dad sent out... it gives more detail than I can. Please continue to pray for Gloria.

Sunday, September 14th, was the 49th day of Gloria's stay in Swedish Medical Center in Seattle. The first 7 of those days were in the Pediatric Intensive Care Unit. Until September 5th, the outcome for Gloria was not looking very good. All concerned were very worried about Gloria and praying for a miracle.

On September 5th Gloria started tracking movement with her eyes. We started to notice improvements every day or so. Since then we have seen improvements at an accelerating pace. It is clear that she is definitely on the path to recovery. How complete her recovery will be from her stroke is unknown. The doctors are unable to predict any scale of recovery that she might have - minor to full. However, a child's brain structure is much more able to repair and rewire itself than an adult's.

The following is the list of improvements noted in Gloria on Sunday.
1. She is moving her left leg much more. She seems to be moving it to get it in a more comfortable position (more self-aware?).
2. She held her head up and turned to look to the left. She has done this before but really held her head up higher and longer than before and slowly set her head back on the pillow.
3. Sunday was a bright sunny day in Seattle. Therefore we took Gloria out of the hospital building and into the sun. Her nurse tracked us down so she could give Gloria a shot of insulin. She noticed that Gloria's pupils were contracted. Later, back in the room, the nurse tested Gloria's pupil reactions with a flashlight. Her pupils were contracting when the light was shined into her eyes. Her eyes had not been doing this previously, and the nurse considered this a big improvement. (Pupil dilation is not an automatic response. It is done by the brain processing the incoming light level and directing the pupils to adjust accordingly. This means Gloria's brain is now more fully engaged in her vision process.)
4. Gary has been letting Gloria's left hand grasp the fingers of his left hand. On Sunday Gary made it as difficult as possible for her to easily do this. The result was a struggle that basically ended up as a thumb wrestling contest. She did not win but the will to win was there.
5. Gloria has continued to enjoy the paper bird mobile. Gary has tried to get her to hold the red bird. For her to do it he had to put her hand on top of the bird with the support string between her fingers. On Sunday when Sherry came into the room, she found Gloria holding on to the bottom of the red bird. This means she raised her hand and grasped the bird herself.
6. A plastic music box was playing a tune while on her pillow. Gloria reached over with her left hand and pushed the music box up to the top of the pillow. This was done with deliberate intention and perfect muscular coordination. She did what she wanted to do!

Also early on Saturday morning, the nurse noticed that Gloria was making sounds and moving her mouth. She believes that Gloria might have been trying to talk. We have been watching but have not noticed any repeat of this action.

Monday will be the 50th day at the Swedish Medical Center. We have been scheduled to move to Ashley House on Monday, and this time they "promise" that it will happen. We will now have a 15 minute drive to Ashley House as opposed to the I-5 expeditions to downtown Seattle. It will also allow more focus on her rehabilitation which is really happening now. The goal at Ashley House is to qualify Gloria to get into the rehabilitation program at Children's Hospital. To qualify, Gloria must understand and obey commands to perform a task and be able to participate in the treatments for 3 hours per day. Presently, Gloria cannot do any part of the requirements.

For Monday and Tuesday, I request that there be absolutely no visitors or phone calls to either Swedish MC or Ashley House. These will be very hectic days with the transfer from Swedish and setup at Ashley House. We need all of the time available to mesh with the staff and accommodations at Ashley House and to ensure the supply chain of venders of medical supplies and medical services are in place. Remember, there is only a small staff at the Kent Ashley House and they should not be put in the position of entertaining visitors. Visitors should coordinate their future visits to the times Gary or Sherry are present.

That said, I invite you to participate in Gloria's recovery. At Ashley House we are much closer to her circle of friends, and her recovery is making very good progress. The highest priority helpers would be the people she is most familiar with, which include her peers at St. Anthony School and her neighborhood friends. Seeing your faces, hearing your voices and listening to your conversations are the stimuli that are needed for her "awakening". Other volunteers are also welcome to read to Gloria, play music for her, or interact in any other way to engage her (thumb wrestling?).

The easiest way to schedule volunteer visits would be to email me the days and times you are available. I could then determine an open time for the visit and email you back. Please be sure to include phone numbers for a quick call back if the visit has to be postponed at short notice.

Visits should go well now since Gloria has a very normal sleep pattern. She has occasional short naps during the day if she tires out due to stress. If she starts to nap during a visit, please let her sleep since she needs the rest. It will not be long before she wakes up from her nap. Gloria is still being fed only through a tube that goes into her stomach. Do not bring any food or drinks for her.

Many thanks for the prayers for Gloria given by her friends and relatives and by all of the participating prayer chains across North America and Europe.

Memories

Sáin asked me this morning where I was during 9/11. This is the first time Sáin’s asked me and two thoughts came immediately to mind. 1. She’s getting older. 2. I’m getting older. (I remember thinking everyone who could tell you where they were when Kennedy got shot or when man landed on the moon was OLD.)

So I told her.

I was driving to work on the I-90 bridge, it was just before the Mt. Baker Tunnel and I heard them announce it on the radio. I called my dad because I knew he would be awake.

I got to work and only one other person was there – Kevin Barrett. Kevin and I immediately called our NY office which was located only blocks from ground zero. They were okay.

My job that day was to track down all NY employees – 324 people. The photographers were easy to find. Pictures were coming in so quickly that day. Quick and unfiltered – I am still haunted by some of the unfiltered pictures that came in. Others weren’t so easy to find. I called spouses, siblings, parents, ex-spouses, estranged children, it didn’t matter who you were or how old the data might’ve been if there was contact information in the personnel file, I called it. By the end of the day every NY employee was accounted for.

That day I talked to so many people; everyone had a story to tell me. Everyone thanked me for calling and everyone wanted to talk. So I listened. I listened to a 90 year old grandmother talk about an unaccounted for grandchild and to teenagers crying for the Mommy and Daddy. I listened to it all. I listened and I learned more about humanity that day than I had in the 20 some odd years before.

For weeks I got cards, letters, and even a box of amazingly delicious chocolates from people thanking me for checking on their family members and thanking me for listening.

Every September 11^th I think of those people. I wonder how they are doing 7 years later.

When I was done telling Sáin this story she said to me, “You must be proud you were able to find all those people.” Like I told her – I don’t really feel proud, I feel lucky.

Strange Conversations

One of the strangest things I’ve learned in the last couple years is that Sáin can hold (somewhat) coherent conversations in her sleep.

The most common thing said to me during early am checks, “Why are you doing this? I’m not diabetic at night.”

But here are a few of the more interesting conversations from the past week:

(Having just poked her finger)

Sáin: Oh good, it’s time to eat. Can I have spaghetti?

Me: No, honey, it’s the middle of the night. I just needed the check your blood sugar.

Sáin: Oh, so no spaghetti?

Me: No, sorry. I’ll be back at 3:30 to check you again.

Sáin: Can you bring some pancakes when you come back?

Me: I will see what I can do.

Sáin: You’re such a good mom.

(me trying to get Sáin’s finger for a poke – she likes to hide them)

Me: Sáin, I just need your finger for a poke

Sáin: Is it time for karate?

Me: No, it’s 1:00 and I need to check your blood sugar.

Sáin: Why can’t I go to karate?

Me: Because it’s the middle of the night.

Sáin: No it’s not, the sun is just setting earlier these days.

(Having just poked Sáin’s finger and she’s pulling it away)

Me: Hold still, I have to get the blood on the strip.

Sáin: Did my CGM alarm go off?

Me: Honey, you don’t have a CGM yet.

Sáin: Why aren’t you working on that? Did you call JDRF?

Me: Trust me, Sáin, I’m working on it.

Sáin: Have Aidan help -- he’s really charming.

Me: Good idea.

Sáin: Yep, I’m pretty smart.

(and modest, too!)

JDRF Press Release

(because sometimes it's easier to cut & paste than writing your own post. I wonder if the insurance companies will still say the findings haven't been published in an major journals since this one is published in the New England Journal of Medicine?)

New York, NY, September 8, 2008 -- Patients with type 1 diabetes who used continuous glucose monitoring (CGM) devices to help manage their disease experienced significant improvements in blood sugar control, according to initial results of a major multicenter clinical trial funded by the Juvenile Diabetes Research Foundation. Results from the study were presented today during the European Association for the Study of Diabetes (EASD) annual meeting in Rome, and portions of the data will be published in the October 2 issue of the New England Journal of Medicine, available on line today at nejm.org.

The CGM study is a randomized, controlled trial involving 322 patients spanning the age range of 8 to 72 years at 10 sites, which included academic, community, and managed care based practices at the Atlanta Diabetes Associates, the Joslin Diabetes Center, Kaiser Permanente Southern California, Nemours Children's Clinic - Jacksonville, FL, the Lucile Packard Children's Hospital at Stanford University, the Barbara Davis Center for Childhood Diabetes at the University of Colorado Denver, the University of Iowa, the University of Washington, and Yale University, and coordinated by the Jaeb Center for Health Research in Tampa, Florida. Patients were assigned to either CGM or a control group using standard blood sugar monitoring and were followed for 26 weeks to assess effects on blood sugar control, principally assessed by measurement of the HbA1c level. At enrollment into the study, patients had HbA1c levels of 7-to-10% (the goal for adults with type 1 diabetes generally is a level below 7% and for children and adolescents below 7.5-8%). Three age groups were analyzed separately: 8 to 14 years of age, 15 to 24 years of age, and 25 years of age or older.

Improvements in blood sugar control were greatest for CGM patients 25 years of age or older, whose HbA1c levels decreased (improved) during the study by an average of 0.53% compared with control patients (p<0.001); improvements in secondary measurements were also significantly greater in CGM patients, including the percentage of patients able to achieve an HbA1c level below 7%, or a 10% relative or 0.5% absolute drop in HbA1c. The improvement in HbA1c occurred without an increase in hypoglycemia (low blood sugar), which is the worry when attempting to tighten glucose control. In children aged 8-14 years old, the average decrease in HbA1c was not significantly different in the CGM and control groups; however, those in the CGM group were more likely to lower their HbA1c by at least 10% and achieve HbA1c levels below 7% compared with the control group. Fifteen-to-24-year-old CGM patients, as a group did not experience significant improvements in glucose control compared with the control group.

CGM use varied with age, averaging at least six days a week over the course of the trial in 83% of the patients 25 years and older, but dropping off to 30% of the 15 to 24 year olds and 50% of the 8 to 14 year olds (for whom CGM use typically involved their parents' assistance). Although the study was not specifically designed to assess the effect of frequency of CGM use on HbA1c, an analysis presented at EASD suggested that patients within all three age groups, including teens and young adults, who used the device at least six days a week had substantially lower HbA1c levels after six months compared with patients who used CGM less than six days a week.

"These results are very important, because they show that continuous glucose monitors are more than simply devices of convenience for people with diabetes - they are tools that can substantially improve blood sugar control when used regularly," said Dr. Aaron Kowalski, Program Director for Metabolic Control at JDRF. "Based on the findings of previous studies, better control of glucose levels over the long term can be expected to translate to a lower risk of complications for people with Type 1 diabetes.

The lower levels of regular CGM use among children and teenagers observed in this study underscore the importance of continued research into a closed-loop artificial pancreas -- a device that uses CGM data to administer appropriate doses of insulin through a pump without the need for involvement of the patient or for young children their parents."

About Type 1 Diabetes
Type 1 diabetes is an autoimmune disease that affects children, adolescents, and adults, in which the immune system attacks cells in the pancreas that produce insulin, a hormone that enables people to convert food into energy. People with type 1 diabetes are dependent on insulin for the rest of their life. But insulin is not a cure, and people with diabetes are at significant risk for a wide range of serious complications, including heart disease, blindness and kidney disease. As many as 3 million people in the U.S. have type 1 diabetes.

About CGM Devices
CGM devices, manufactured by several companies and approved by the FDA as an adjunctive therapeutic for diabetes, provide both a real-time snapshot of the glucose levels of a person with diabetes, as well as trend information on whether glucose is moving upwards or downwards, and how fast. Devices also provide warnings when the glucose is becoming too high or too low.

Eight Things I am Thankful For

I am thankful it's Friday. Even though the weekend ahead is not exactly a restful one, I am thank for for a weekend.

I am thankful for a successful first week of school. Aidan loves kindergarten and Sain loves third grade. What more could a mom ask for?

I am thankful for Sain's good blood sugar readings this week. Only one high and one low all week!

I am thankful for the American Colleges of Mixed Martial Arts for giving me back the smile my daughter lost almost 4 years ago.

I am thankful for the Tailgate party at the school tonight which means I don’t have to cook dinner.

I am thankful that I finally got a refund from the dentist that screwed up my crown because I can now pay for Sáin’s birthday party!

I am thankful Aidan has karate after his blood draw at Children’s tomorrow – it gives him something to look forward to.

What I am most thankful for is Gloria’s improving condition. She is now able to follow people, object, etc. with her eyes and is turning her head to look around. She is truly a fighter! (You can read more about Gloria in the 7/31, 8/7, 8/12 and 8/13 posts.)

First Day of School

Yesterday was the first day of school. Aidan started kindergarten and loved it. Sain started third grade and also seemed to love it. Best part -- Sain's blood sugar readings were in range all day!!

Here's a few pictures: