Tuesday, December 30, 2008
But those days will never come back.
There is something I long to blog about, something that has happened in our world, a twist in the plot, fork in the road (you choose the cliche), but it is not my story to write. So I will honor privacy out of respect for a little girl I hardly know.
Instead I will write this...
Caring for a diabetic child is hard. It is something that takes time and effort and a heck of a lot of sleepless nights. But we (the many parents of diabetic children) do it because the consequences of not doing it are unthinkable.
None of us asked for this challenge but it was one given to us. I don't get religious in my blog -- there are plenty of religious blogs out there already -- but I view taking care of Sain as something God trusted me to do and I take it very seriously.
Now comes the difficult question -- how do you respond to a child who realizes at the age of 9 that the right answer to a tough question is not the easy answer and that same answer is not what everyone wants to hear?
I responded with honesty.
In the last weeks I have repeatedly promised Sain I will always take care of her and work with the amazing people around us to provide all the best care for her. Thank you Mom and Dad for being my back up(and for promising me you will always put Sain's well-being before mine)and Thank you Children's Hospital for guiding me and for providing a safety net even if people can't understand it.
Monday, December 22, 2008
If anyone doubts that Aidan is a ham -- check out the video. He's the shepherd in the red.
Have a Merry Christmas! Hopefully we are off to Vancouver tomorrow (as long as Amtrak will coorporate.)
Sunday, December 21, 2008
Friday, December 12, 2008
It was just after 1:00 am. I woke up and there I was -- sitting on the side of her bed, meter and lancing device out, test strip in. The pump was beeping so I silence the alarm, grabbed one of Sain's abused fingers and poked.
Not terrible... I know, a little high, but not the worst. I gave her a small correction and went back to bed.
I don't know how long it took Pavlov to train the dogs to respond to the bells but it appears it only took "Pumpy" (if you know Sain then you know she names EVERYTHING) 3 months to train me.
Wednesday, December 10, 2008
1 day until the Christmas concert at school. Sain and Aidan have grown up so much in the short time I've been attending the St. Anthony's Christmas Concerts.
2 days until Seven Brides for Seven Brothers with the SMU folks but more importantly 2 days until Gloria gets to go home. If you need an example of a modern day miracle, read through this.
7 days until Aidan's kindergarten Christmas Play. This year the lead Sheppard will be my favorite role... 3 years ago Gabriel was my favorite.
14 days until we head to Vancouver for Christmas. It might be viewed as selfish by some, but I am really looking forward to Christmas alone with my kids.
46 days until the JDRF Jump Event
159 days until Beat the Bridge 2009. It's hard to believe this will be our 5th year fighting for a cure. In ways it seem like we've always lived with this disease; in other ways it feels like just yesterday Sain was diagnosed. A lot has changed in 4 years!
Tuesday, December 9, 2008
Friday, December 5, 2008
(He even tried to convince me that if I light all 4 candles on his Advent Wreath Christmas would come more quickly.)
Put Aidan's impatience together with the lack of sleep from excitement and you've got one very cranky little boy. But I came up with a plan.
Today I went to Target at lunch and bought both kids 20 $1 toys and candies. Each day until Christmas they get to unwrap a small gift. Each gift has a letter A - S on it. Rather than have them randomly draw a letter out of a hat, I made origami fortune tellers (three for each kid - one red, one green, and one white) and made each letter be a fortune. Once they choose a letter I have stickers to cover it up so we won't choose that again.
When I ran the idea of a small(I emphasized small) gift every day until Christmas by Aidan last night be thought it was great. Even better, he behaved all evening and was in a great mood this morning.
Hopefully it will work and Advent won't be such an overwhelming time for him.
** Next week is the Christmas concert at school. Sain is excited to wear her new boots. (I can actually fit my foot in her new boots -- she's getting too big!) The following week is the kindergarten Christmas play. I have to brag and say that Aidan has a speaking role. He's the lead shepard. That is a huge accomplishment for a little boy who is in speech therapy twice a week and will probably continue that way for the next few years.
Monday, December 1, 2008
"Lows suck" -- Sain
In the middle of Ikea, on the day after Thanksgiving an alarm sounded.
The alarm wasn't loud and no one else heard it. No one else stopped. But my heart stopped. Thank God for CGMs.
I pulled Sain (truthfully a shell of Sain -- a vacant, quiet, pale shell of my vibrant 9 year old) to the side. She grabbed a stuff kitty to comfort her and I grabbed her meter.
I kick myself for grabbing only her meter from the car and not the overly packed kit but I thank God when I look up and see we are right next to the cafe. I cut in line, grab a kids cup, throw $2 at the cashier and rush to the fountain drinks.
I didn't yell at the woman taking her time getting Coke -- I just shove my cup under the Sprite. "It's not a matter of life and death if you get your Sprite you know." I say nothing because getting to Sain was far more important than a confrontation but I make a mental note to myself never to use that phrase again.
I refill, again.
Sain feels sick. She's not used to sugared soda so we sit and wait for the sugars to kick in. (She still has the kitty in her hand.)
20 minutes pass and she continues to sip her Sprite.
We finish our shopping (which included her new kitty she fittingly named "Hypo") and head home.
On the way home I asked Sain what lows are like. "Lows suck," she said. Then she hugged Hypo and cried.
Tuesday, November 25, 2008
I am thinking... that next year I need to ask for the Tuesday before Thanksgiving off so I can volunteer at Grandparents Day at St. Anthony's.
I am thankful for...insulin, my kids, my parents, Tennyson (my cat, not the poet), Fredrick Banting, Medtronic, JDRF, great teachers, friends, other bloggers who know what it's like to have a type 1 kid, Diane Kane (Sain's health room coordinator who does an AMAZING job!).
I am wearing.... jeans, skate shoes and a Maple Leafs hoodie. (how predictable!)
I am creating...a manual for my job, Christmas cards, and the early drafts of this year's Beat the Bridge letter.
I am going...slowly insane :) No, I guess I am going home then to the karate school but that's not for quite a while.
I am reading...Lady Oracle by Margaret Atwood.
I am hoping...for a cure, stability, snow, peace, a Stanley Cup for my Leafs.
I am hearing...the hum of the HVAC and someone typing a few cubes away.
Around the house....Tennyson is probably having a wild party (or sleeping.)
One of my favorite things...the sound of blades on ice (a hockey person will understand.)
A few plans for the rest of the week: Work, karate, work, karate, Thanksgiving at my parents, sleep, then more karate.
Monday, November 24, 2008
I love that my kid is growing and growing up but man is it wreaking havoc on her blood sugars!
(She's doing better now but it was definitely a fun weekend!)
Also, Sain is no longer a white belt... she's now an Orange Recommended! (I will get the picture up on Flickr tonight.)
Wednesday, November 19, 2008
Back story -- Aidan is a part of a research study that tracks to progression of diabetes. He was genetically tested at the age of 3 for a gene linked to diabetes. He has it. Aidan was also tested for autoantibodies linked to diabetes. He has them. For two years he's had no progression. Just because he has the gene and autoantibodies doesn't mean he will develop the disease... they keep reassuring me this.
Jump ahead to Aidan's 5th birthday. I have Aidan's bloodwork done every birthday (nice present, eh?) and wait for the letter saying everything is fine. This year I got the phone call asking me to bring him back in for a second blood draw. Aidan's second blood draw was in early September. I was told I would hear back in 6 - 8 weeks. I haven't gotten the much desired letter (you ALWAYS want a letter rather than a phone call with blood work -- that's one thing I've learned) and I am trying not to worry since I haven't gotten the phone call yet either.
What I am really, really hoping for is a letter in my mailbox when I get home today. I'll keep you posted.
Tuesday, November 18, 2008
Not too bad considering the extreme highs for the last two weeks from illness and growing over an inch in the last 3 months! (she's over 4'6" now (138 cm))
(Sain's last A1C was 7.4. I was expecting this one to be higher because of all the sustained highs she had with the infection. What a pleasant surprise 6.9 was... it's nice when all the hard work pays off!)
Friday, November 14, 2008
A few facts:
-Every 10 seconds a person dies from diabetes-related causes.
-Every 10 seconds two people develop diabetes.
-Over 250 million people live with diabetes worldwide. In 2025, this figure will reach 380 million.
-More than 200 children a day develop type 1 diabetes.
-In developing countries, close to 75,000 children live with diabetes in desperate circumstances.
-Type 1 diabetes is increasing fastest in pre-school children, at a rate of 5% each year.
Thursday, November 13, 2008
Monday, November 10, 2008
No one there knew the week she had but if you look closely enough there was a sign.
Sain kept both her hospital bracelets on for testing and when asked why responded, "They remind me how close I was to not being able to test and if I get to nervous they remind me how lucky I am to be here."
Next Saturday a number of kids will be awarded their new ranks. I know I am a bit bias but no kid deserves advancement quite as much as Sain.
Tuesday, November 4, 2008
Friday, October 31, 2008
I have a love/hate relationship with Halloween.
I love the spooky houses, costumes and trick or treating but I don’t love the way Sáin is treated on this holiday.
The first Halloween after diagnosis I did something that I am very thankful for… I let Sáin pretend she wasn’t diabetic. That year she had a fair amount of treats – I corrected the high BG that followed. The second year she had a little candy – I corrected that high, too. Last year she barely touched her candy (we still have most of it sitting in a bowl on a shelf.) This year we are going to a haunted castle and Sáin is well aware she can have whatever she wants while we’re there (as long as she boluses.) The less of a big deal I make about this dreaded day, the less candy she eats.
Here is what I don’t love about this day. I know I will come home today to the tears of frustration that follow school parties and the dreaded “Sáin can’t have sugar” or “Here’s a different treat for you because you aren’t like the other kids in your class.”
Despite 3+ years of educating both the kids and their parents, some people still don’t get how hurtful ignorance is. The sad thing – it’s always the same two girls that hurt Sáin. I’m beginning to think they are just mean girls and diabetes is an easy thing for them to pick on.
I know it’s only Halloween but I can’t stop thinking about Christmas.
My gift to the kids this year is a trip to
(I’ve already email a temporary change of address to Santa so all the toys should arrive safely in our hotel room for Christmas morning.)
This will be the first Christmas the kids and I have spent without any other family around but I think it is exactly what we need.
Wednesday, October 29, 2008
Truer words were never spoken and that is the focus of year's World Diabetes Day.
Please take a moment to watch this short video (7 minutes) and check out the Life for a Child movie trailer and pass the message on.
The more people who know the signs, the fewer kids will die.
Sunday, October 26, 2008
Friday -- well, to be perfectly honesy, I don't remember what we did Friday night. I know there was no karate, no school events, and no JDRF events. We must've stayed in. (hmmm, very unlike us!)
Saturday -- got the kids over to my parents' house by 8 hoping to leave by 8:30 with my dad to pick up 20 boxes of fuji apples (the ones Sain sold to help pay for Camp Leo) at the Thurston County Fair Grounds. After a tubing mishap (just before we left) and a trip back home to grab pump supplies (yes, I know I should've had them with me) my dad and I were on the road by 9.
Sain and Aidan went to karate (thanks to grandma) and we (dad and I) picked up the boxes in Lacey and were back on the road by 10:30. By noon 9 of the 20 boxes were delivered!
Saturday afternoon I rushed around after a karate belt mishap (won't go into details about that) to get the kids ready for their karate pictures. In a rush to get out the door on time I ran out without my keys or cell phone. This wouldn't have been a problem (I really can live without my cell despite what some people might tell you) except the door locked behind me.
The neighbors (very reluctantly) let me use their phone to call for assistance and we made it to pictures on time. (side note -- as 1950's as it might seem, my neighbors do not approve of single parents. Their children aren't allowed in our yard because the don't want their children "exposed to my lifestyle." Part of me is offended and part of me is kind of flattered that they think I have an exciting lifestyle. Truthfully I have a pretty boring life!)
We got to pictures on time and they turned out great. I can't wait to get the prints back!
We got home in time to see some hockey. The Leafs won and it's truly sad how excited I am about 3 wins in October so far.
Sunday was spent exploring leaves (Aidan is studying seasons) in Enumclaw, making a St. Martin de Porres costume for Sain for the All Saint's Day prayer service, and washing large amounts of kindergarten mat covers (yippee -- the time the washer runs counts for volunteer hours!!)
Two highlights of Sunday -- Sain running around playing "diabetes scout" and doing a pretty good sales pitch for foil wrapped ketone strips. Most 9 year olds haven't really perfected the art of sarcasm but Sain definitely has. And Aidan jumping on my bed singing Metallica songs at the top of his lungs. He told me he's going to be in a band when he's in high school and I can come watch him play as long as I stand in the back and promise not to scare the girls away.
Friday, October 24, 2008
(no candidate will be mentioned in this rant. Who you vote for is your own business just as who I vote for is mine. I don't vote party line on anything; I vote my heart and my conscience.)
There has been a lot flying around of late about the changes both presidential candidates want to make to America's health care.
Back when all I needed was routine care and long before diabetes entered our world, I thought the US had good health care. I thought if you got sick your insurance would cover what you needed.
I was wrong.
Insurance is a business and businesses exist to make money.
To all the people who think it's not their concern if someone has pre-existing conditions or if their premiums are slightly higher to cover the sickest "fellow Americans" here is what I wish for you (it might be mean and I know some people won't agree but deep down in a very honest and possibly angry place, this is my wish for you):
- May you suffer the sleepless nights I do worrying about your child's health.
- May you be told your child is 12 hours from death and will require constant medical care to survive.
- May you have to choose between food and insulin (both of which your child needs to live)
- May you have your 9 year old tell you they "will save you a spot in heaven since I will probably get there before you"
- May you fear loss of heath insurance more than loss of income.
- And may you be told a $5000 tax break is more important to people than your child's life.
Thursday, October 23, 2008
I was looking at Sáin last night when it hit me – my kid is really growing up. Laying there on the living room floor reading a Harry Potter book she looked more like a teenager than a kid.
I’m not the kind of mom that gets weepy when I think of my kids growing up. In fact, I’m quite the opposite. My main goal as a mom is to make myself obsolete by raising independent, self-sufficient kids. And I seem to be succeeding.
Here’s my concern. Right now I know what’s going on with Sáin’s blood sugars. I know her trends, I know her rates, I know the carbs she eats, and really you could say I know her diabetes care inside and out. But that will change. One of these days she won’t need any help with any of it.
I am raising Sáin to care for herself. I let her make mistakes and over bolus (as long as I am there with juice in hand to correct the low) or under bolus (I am also there to correct the high) but I want her to make mistakes now and learn from them while I’m there to help rather than wait until she’s alone and trying to do this by herself. Truthfully, she makes very few mistakes.
For nearly 3 and a half years my job has been keeping my kid alive but more and more that job is being handed off to Sáin. I alternate between beaming with pride at how amazingly my kid handles such an unpredictable disease and complete panic at the thought of not “playing pancreas” for her. 99 percent of the time pride wins!
Besides, I can still sneak into her room at night to check her day’s numbers and charts thanks to her CGM!
(Two points – I realize I am talking about a 9 year old but if you know the 9 year old I’m talking about, none of this will surprise you. One of the meanings of Sáin’s name is “little, old wise one” and she’s always lived up to that meaning. Also, there are still days when Sáin won’t even poke her own finger so I am far from obsolete yet.)
Wednesday, October 15, 2008
It's my true hope that you somehow read this today and know that your childhood friend is thinking of you on your birthday.
We met because of alphabetical seat assignments in the second grade and were an unlikely pair. Me the skinny, athletic tomboy and you the fashionable foreign girl but our bond was instant and strong. We were both outsiders until we had each other.
Thank you for teaching me French, introducing me to Lebanese food and for teaching me the importance of standing up for myself. Thank you for laughing with me in the good times and crying with me in the bad. You were the best friend I ever had.
I hope your birthday is wonderful... I miss you!
Tuesday, October 7, 2008
I’ve been asked a lot of questions today… here are the answers.
Are you feeling better?
Yes and No. (I know I should elaborate but I’m not going to)
How was your birthday?
Fine. As most people know, I don’t celebrate my birthday. It has nothing to do with age (I haven’t liked celebrating my birthday since early childhood) and nothing to do with religion. I just don’t celebrate it. Bad things tend happen on my birthday and this year was no exception. (I should also elaborate on that but I’m not going to.)
How did Sáin’s CGM start go?
GREAT! I love the device and so does Sáin. I find it less overwhelming than the pump start and I love all the data. Sáin was even interpreting her own data last night – she’s so independent for 9! I’m sure there will be days I hate the CGM but as of now I love it!
How is Gloria doing?
Amazingly well! It’s odd to think that a couple months ago it didn’t look like she would live and now she is smiling, communicating some and was even found standing by her bed in the middle of the night by her nurse! By no means is she recovered or out of the woods but she is healing so much better than anyone could’ve guessed. I only met Gloria in person once but heard a lot about her from Sáin. In that one meeting I could tell that she was a feisty kid – that trait is serving her very well right now!
Wednesday, October 1, 2008
(Sain punching SpongeBob)
(Sain, Rory and Hannah)
(Cutting the cake with Master Dye's sword)
(Aidan, Ethan and Chris belt sparring)
(Ethan and Master Dye -- this is one of my favorite pictures from the party. Ethan was so ready to go out and punch the pinata!)
Friday, September 26, 2008
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!
Tuesday, September 23, 2008
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.
Sunday, September 21, 2008
Friday, September 19, 2008
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!
Wednesday, September 17, 2008
Tuesday, September 16, 2008
#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
#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.
Monday, September 15, 2008
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.
Thursday, September 11, 2008
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
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 11th 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.
Wednesday, September 10, 2008
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!)
Tuesday, September 9, 2008
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.
Friday, September 5, 2008
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.)
Wednesday, September 3, 2008
Friday, August 29, 2008
Truthfully, I think my mood stems from seeing in writing the fact that it was just a few months post-diagnosis that I was presented with the lovely challenge of single parenting. (We were interviewed at JDRF for PR stuff.)
I don’t blog about that aspect of my life, I try to keep it separate, but I am going to cross that line a little today.
Financially it’s tough. I wish I had the money to do everything I want (and everything my kids deserve) but on one income it’s tough to keep up with medical costs and private school tuition. Both of which are too important not to pay for. Thank God my kids have good imaginations and we can make our own adventures instead of having to go places.
Physically it’s tough. I know the lack of sleep and constantly pushing myself to do more is not healthy but it’s what I have to do. There are days when I lie in bed after my alarm goes off and seriously wonder if I am going to be able to get up. But I do it and I will continue to.
Socially it’s tough. I get one night a month without the kids and most of that is spent worrying that their dad won’t check blood sugars or will let alarms on the pump go off without fixing them (sadly, this happened.)
Emotionally it’s most tough. I have a great network of friends and family around me but no one is there in the middle of the night. I would love to be able to come back to bed after a 2 am check and tell someone (besides Tennyson) how the numbers were. No one in my network of people really knows what it feels like to be alone and do this.
That said, I wouldn’t change a thing. I have the best kids, the best family and friends, and the best cat (who really does seem interested when I tell him Sáin’s nighttime numbers.)
Have a wonderful Labor (or Labour if your in
(I TOOK MY iPOD OFF SHUFFLE BECAUSE IT SERIOUSLY WAS PLAYING ONLY DEPRESSING SONGS!)
Thursday, August 28, 2008
What does mine says about me?
Left to right:
- Pictures from Sáin’s first day of kindergarten and from the 1st grade Christmas concert.
- Referral cards to my wonderful dentist.
- A stand made out of benefits cards that had been propping up Marvin the Martian.(Marvin is now living safely on Deb’s cube wall.)
- A leaf (there are actually three leaves on this shelf.)
- Super Deflectos – The superhero cows Julie and I came up with to deflect negativity at work.
- My Maple Leafs Easter egg standing on a turtle from
- A lucky leprechaun (on the wall next to the Super Deflectos)
- Devil ducks walking across a wrench (also found on
Willows Road) to another turtle. (notice the baby duck is the leader since youngest children make the best leaders!)
- A garden gnome
- A lucky clover from
(This stuff is actually from a shelf above my desk. Since I work with confidential information I can’t take a picture of my actual desk. Plus my desk is very, very messy right now and no one needs to see that!)
Wednesday, August 27, 2008
Your day ends when you go home. You don't have to think about this disease 24/7. How nice it must be for you to not worry your child might have a seizure or die in the middle of the night. How nice it must be for your child not to worry about these things.
The reason Sain doesn't have seizures is two-fold
1. I check her MANY MANY MANY times a night -- last night it was at 9, 11, 1, 4 and 6 am. Were you up at those times, too?
2. I run her numbers higher at night so I can get A LITTLE sleep.
(Hmmm, maybe that's why her A1C is a little higher -- did you think of that?)
To say she does not need one after telling me she's a great candidate for one and that it would greatly improve her stability and prevent long term complications is absurd.
I have never been as angry, sad, disappointed as I am right now.
(Interestingly enough, this post is NOT directed at the insurance companies. No, this wound cuts much deeper.)