This morning Connor and I headed to Sonora Quest Labs for Connor's annual blood work. The first of many more years to come.
While sitting in the lobby one of the other waiting "victims" noticed Ol' Blue protruding from Connor's hip. She asked what kind of pump he had. Her younger son (not present) wears an Animas Ping.
As I looked at this mom there was a moment of sameness. Fear, frustration, anxiety, helplessness, hope, understanding, love, and devotion all summed up in one glance at each other. I knew, that she knew what it was to live this type 1 life, and I knew that I wasn't alone.
We talked about the upcoming JDRF Walk for a Cure. This would each be our families first walk. Our boys were diagnosed one month apart.
As our name was called we walked into our room and waited for the impending blood draw. As our lovely phlebotomist gathered her supplies another staff member came in and handed her their JDRF walk shirts. We then had a conversation with our needle wielding blood enthusiast about how Sonora Quest was a big supporter of JDRF. There were several staff members participating in the walk itself while others were volunteering at their company booth.
It was so refreshing to see people talking/advocating about the disease MY son has. Most people/companies/media associate diabetes with type 2, a completely separate and different illness.
It had been a great start to my day. Meeting another type 1 mother, and talking to someone who's company is a huge supporter of something that so deeply affects my life. It was like a had been given a renewed sense of strength and determination.
That is until.....
Connor saw the 3 vials that would soon contain his crimson blood and the needle and tubing that would be extracting it all. I could see this sense of fear wash over his face. My child who gives me strength with the amount of courage he shows me everyday, who never even bats an eye at all the finger pokes, site changes, shots etc, was afraid. I watched as all of the color drained from his sweet face. I watched as he held back the tears as the needle pierced his tender flesh. To him it hurt, A LOT.
His arm was then wrapped in a green bandage and he went to give a urine sample. Having just passed our one year mark, and this being our first annual blood work I asked this patient woman what the urine sample was for. She told me it was to test..... kidney function.
I felt as though all the air had just left my lungs. I was caught off guard. I'm sure these are standard tests that everyone with diabetes is given every year, but having a father who has been on dialysis for going on 2 years due to renal failure, my mind instantly flashed to what could be for my son. The complications that he might one day face despite all of our hard work.
As we walked to the car Connor pleaded with me about not going to school. I asked him why and he told me that he didn't want the kids to ask where he was or why he had the green bandage on his arm. He told me that they constantly ask him if it hurts when he tests his blood sugar, or why he gets to go to lunch 5 minutes early, or to the nurses office whenever he "wants" to and why he gets to eat special "treats" during class. He told me that sometimes he doesn't like being different than everyone else.
Trying to pretend that I wasn't dying inside, I offered the only words that came to my now frazzled brain. I told him that his classmates don't really know what it's like to have diabetes. All they see is that you get to do all of these different things. To them it might seem like you are getting to do something fun not really understanding everything you have to do to keep yourself healthy.
And then came the rest of the heart piercing words flooding out of his mouth....
"There's nothing fun about diabetes. There's nothing fun about high or low blood sugars and how crappy they make my body feel. There's nothing fun about having to guess the amount of carbs in your food and hoping that you guessed right and that your blood sugar doesn't go too low or high because of it. There is nothing fun about having your blood taken. There is nothing fun about all of this stuff I have to do every day."
And with that I called the school to excuse him for the day.
Today started out as a great day, uplifting even.
Now my heart just hurts.
I found this quote that I really love. It helps on days like today.
~Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow." ~ Mary Anne Radmacher
Wednesday, October 26, 2011
Saturday, October 15, 2011
That Day and This Day
October 15, 2010, the day of days.
It was this day that the big D entered our lives. I have thought for months what I would write today on the 1 year anniversary of Connor's diagnosis. But now that I am faced with today there don't seem to be the right words. Today has been filled with a wide range of emotions for me. At different times throughout the day I've had flash backs to a year ago. Standing in the nurses office as she tested Connor's blood sugar for the first time. Seeing that 525 on the meter, knowing in that moment nothing would ever again be the same. The drive to the hospital stopping for water because he was so thirsty. Waiting in the triage room for the ambulance to come and take us to the children's hospital, praying for Brent to get there in time. Watching Connor as he played with all the different games on the tv in his room. His tear filled eyes that pierced my heart as he watched me give him his first injection. Almost every detail of every moment has been seared into my memory. I can tell you the clothes he was wearing, the food he ate, the movie that he watched as he fell asleep. The friends birthday party he missed, the phone calls I made. The look of worry on my oldest son's face as I told him we had to take his brother to the hospital. I can remember it all. It's been like a movie, playing in my mind all day.
As I have reflected on the events that took place a year ago I wonder, will the sting ever go away? 5 years from now will I be able to remember everything with such clarity? Will I be able to look back on THAT day and not have my eyes fill with tears?
These last 12 months have at times been daunting. Some days the weight of being a parent and a pancreas is heavier than others. Our daily routine had completely changed. I haven't slept thru the night in a year. I am up until midnight and up again at 3 am testing his blood sugar. Some nights I am up every 2 hours trying to get a stubborn high blood sugar back into range. I wake him in the morning with bated breath hoping that I've kept him safe for one more night. I attend every field trip, birthday party, and special function as his pancreatic backup. For me the nights are the worst. My mind always travels to the what ifs. What if my efforts as a pancreas aren't good enough. Will he suffer long term complications later in life because of the high blood sugars that creep their way in thru every growth spurt, cold, miss calculated carbs, or because the wind changed direction? Will he have a seizure from a low blood sugar we didn't catch in time? What if he passes out at school? Will the teachers/nurse know what to do. There is no greater fear to be had than that of a mother for her child.
We have learned a lot in the last 365 days. In fact I now speak a new language.
BASAL insulin: the insulin given via pump throughout the day to keep blood sugar steady.
BOLUS insulin: the insulin given at each meal
I:C ratio: the amount of carbohydrates that 1 unit of insulin will cover. IE. Connor's I:C ratio is 1:28. So for every 28 carbs Connor will require 1 unit of insulin.
CORRECTION FACTOR: how many points 1 unit of insulin will lower a high blood sugar. IE. Connor's is 1:100 or for every unit of insulin Connor's blood sugar will drop by 100 points.
TDD: total daily dose, (the amount of insulin administered during the day)
INFUSION SET: the part of Connor's insulin pump that attaches to his body. This must be changed every 2-3 days.
RESERVOIR: the syringe like canister that holds the insulin in the pump.
LOW BLOOD SUGAR: anything below 80
HIGH BLOOD SUGAR: for Connor anything above 150
504 PLAN: the protocol put into place to protect Connor during school, (being able to test/treat blood sugars, going to nurse when needed, absences, etc)
This list could go on forever.
I've watched my son grow and mature in ways I couldn't imagine. I admire his strength and determination. He hasn't let diabetes change who he is. He laughs, plays, explores, and imagines great and wonderful things. In fact, diabetes has only fueled his love for math. He thinks its funny to give me his blood sugar in the form of a math problem. He has taught me to love and have compassion, as we are all fighting some battle that is invisible to others. He is my hero and I am thankful EVERY day to be his mother.
As I have looked back over this last year, and have reflected on THAT day, I am grateful for THIS day. For this day we had lunch together, saw a movie, and enjoyed the day as a family. This day we laughed, hugged, and made good memories. This day diabetes was not the topic of conversation. This day diabetes did not take over our lives. This day diabetes was just something that we took care of as part of our everyday routine. This day I kissed and tucked in all three of my happy healthy children into their beds. And as I sit here on this day waiting to check Connor's blood sugar before going to bed, I think of all that we have been blessed with. On this day, his Diaversary, I am thankful.
It was this day that the big D entered our lives. I have thought for months what I would write today on the 1 year anniversary of Connor's diagnosis. But now that I am faced with today there don't seem to be the right words. Today has been filled with a wide range of emotions for me. At different times throughout the day I've had flash backs to a year ago. Standing in the nurses office as she tested Connor's blood sugar for the first time. Seeing that 525 on the meter, knowing in that moment nothing would ever again be the same. The drive to the hospital stopping for water because he was so thirsty. Waiting in the triage room for the ambulance to come and take us to the children's hospital, praying for Brent to get there in time. Watching Connor as he played with all the different games on the tv in his room. His tear filled eyes that pierced my heart as he watched me give him his first injection. Almost every detail of every moment has been seared into my memory. I can tell you the clothes he was wearing, the food he ate, the movie that he watched as he fell asleep. The friends birthday party he missed, the phone calls I made. The look of worry on my oldest son's face as I told him we had to take his brother to the hospital. I can remember it all. It's been like a movie, playing in my mind all day.
As I have reflected on the events that took place a year ago I wonder, will the sting ever go away? 5 years from now will I be able to remember everything with such clarity? Will I be able to look back on THAT day and not have my eyes fill with tears?
These last 12 months have at times been daunting. Some days the weight of being a parent and a pancreas is heavier than others. Our daily routine had completely changed. I haven't slept thru the night in a year. I am up until midnight and up again at 3 am testing his blood sugar. Some nights I am up every 2 hours trying to get a stubborn high blood sugar back into range. I wake him in the morning with bated breath hoping that I've kept him safe for one more night. I attend every field trip, birthday party, and special function as his pancreatic backup. For me the nights are the worst. My mind always travels to the what ifs. What if my efforts as a pancreas aren't good enough. Will he suffer long term complications later in life because of the high blood sugars that creep their way in thru every growth spurt, cold, miss calculated carbs, or because the wind changed direction? Will he have a seizure from a low blood sugar we didn't catch in time? What if he passes out at school? Will the teachers/nurse know what to do. There is no greater fear to be had than that of a mother for her child.
We have learned a lot in the last 365 days. In fact I now speak a new language.
BASAL insulin: the insulin given via pump throughout the day to keep blood sugar steady.
BOLUS insulin: the insulin given at each meal
I:C ratio: the amount of carbohydrates that 1 unit of insulin will cover. IE. Connor's I:C ratio is 1:28. So for every 28 carbs Connor will require 1 unit of insulin.
CORRECTION FACTOR: how many points 1 unit of insulin will lower a high blood sugar. IE. Connor's is 1:100 or for every unit of insulin Connor's blood sugar will drop by 100 points.
TDD: total daily dose, (the amount of insulin administered during the day)
INFUSION SET: the part of Connor's insulin pump that attaches to his body. This must be changed every 2-3 days.
RESERVOIR: the syringe like canister that holds the insulin in the pump.
LOW BLOOD SUGAR: anything below 80
HIGH BLOOD SUGAR: for Connor anything above 150
504 PLAN: the protocol put into place to protect Connor during school, (being able to test/treat blood sugars, going to nurse when needed, absences, etc)
This list could go on forever.
I've watched my son grow and mature in ways I couldn't imagine. I admire his strength and determination. He hasn't let diabetes change who he is. He laughs, plays, explores, and imagines great and wonderful things. In fact, diabetes has only fueled his love for math. He thinks its funny to give me his blood sugar in the form of a math problem. He has taught me to love and have compassion, as we are all fighting some battle that is invisible to others. He is my hero and I am thankful EVERY day to be his mother.
As I have looked back over this last year, and have reflected on THAT day, I am grateful for THIS day. For this day we had lunch together, saw a movie, and enjoyed the day as a family. This day we laughed, hugged, and made good memories. This day diabetes was not the topic of conversation. This day diabetes did not take over our lives. This day diabetes was just something that we took care of as part of our everyday routine. This day I kissed and tucked in all three of my happy healthy children into their beds. And as I sit here on this day waiting to check Connor's blood sugar before going to bed, I think of all that we have been blessed with. On this day, his Diaversary, I am thankful.
Wednesday, April 13, 2011
Ol' Blue in action
Yesterday we went to Cardon Children's Hospital for our second and last pump training class.
Connor and I were both so excited. It was the day that ended his Multiple Daily Injections or MDI in the diabetic world. We went in and met once again with Martha our instructor for the day.
We went over the procedures for the next few days and then proceeded to get out all of Connor's pump supplies. This last week Connor has been connected to his pump but no insulin was put in it only saline. This allowed us to be able to learn how to use the pump with out fear of "messing something up." Yesterday was different. Yesterday we went "live." All insulin all the time.
Tools of the trade (Insulin Pen, Alcohol Swabs, Reservoir, Infusion Set)
We calculated how much insulin would be required for the next 2-3days, filled the reservoir (thing on right side of picture that looks like a syringe) then uncoiled the tubing from the infusion set (blue disc shaped object in lower middle of picture) and locked everything in place. Adjusted all the settings and then attached the site to Connor.
As of 10:15 yesterday morning Connor's external pancreas (his insulin pump) was fully functional.
The next several minutes were spent on showing me how to do different functions using the pump. Things to watch out for procedures to to follow. We talked about our kids. Martha has a 16 year old son who is also a type 1 diabetic and is currently using an insulin pump. As we chatted Connor sat across the room coloring a picture. When the time came I gathered all of my paper work and his supplies. Connor finished up his drawing and handed it to Martha. It was a picture of Cardon Childrens Hospital and very well done I might add.
The best part was the neatly printed words on the top of Connor's creation.
Written in his best hand writing were the words
"Never Give Up"
As we drove away the reminder on his pump went off telling Connor to check his blood sugar. 176. Slightly out of his range Connor was able to give a correction dose (a dose of insulin to help bring down blood sugar levels) using his pump. This level of control was not available to us using MDI. Using an insulin pen we dealt in doses using whole units. With the pump we can give Connor a dose of insulin as small as 0.025 of a unit allowing him better control.
As we headed home I needed to stop at Costco so we decided that we would eat lunch there. Connor got a hot dog and a drink. Entered the carbs into his pump. The pump calculated his insulin dosage. Connor hit the ACT button and started eating. No alcohol swabs. No pen needle. No flicking air bubbles out of the pen. No people staring at me strangely as I inject my child. Holy cow this is AWESOME!
After Connor was done inhaling his hot dog he quickly informed me that he was still hungry and wanted another one. We proceeded to repeat the above mentioned process still with the same amount of awesomeness.
So if you're keeping score that's Ol' Blue (the pump) 3 - Injections 0
and that was only in the first 2 hours.
Later in the afternoon once my other 2 children were home from school they all wanted a snack. This time Connor didn't flinch one bit about having a snack. Before his decision was based on whether or not he was willing to take another shot and not on whether or not he was hungry. This time he didn't even have to think about it. He was hungry so he ate.
This process was repeated as he ate dinner and again with a snack before bed.
8:00pm came and we got excited all over again when we remembered that Connor no longer had to take his long acting insulin (given everyday at 8:00pm to help maintain his levels all day) This process has now been taken over by Ol' Blue. Ol' Blue gives Connor small doses of insulin throughout the day to maintain his blood sugar, no longer requiring him to take his daily dose of Levimer.
When I checked his blood sugar at 3 am (I do this almost daily at midnight and 3 am to prevent lows/highs to keep him safe) the meter read 242. Too high. I grabbed his pump which had already calculated the correction dose and pressed ACT. His pump was quickly at work lowering his blood sugar while Connor was sound asleep. Once again I was deeply thankful for Ol' Blue because I didn't have to give a shot to my sleeping child.
Total score for the first day?
Ol' Blue 8 - Injections 0
I would call that a huge success!
With the pump hopefully now we will see less of this
4 months worth of syringes, pen needles, and lancets (used to test blood sugar)
and more of this
That sweet genuine smile that has been long absent from his cute face.
Ol' Blue is not a cure it's just another way to manage the disease that is with Connor 24/7/365. What Ol' Blue is, is the freedom to be a kid. To be able to push a button and go. It's less painful and can keep him healthier because of tighter control.
It is also a visual reminder of everyone that helped us get to where we are right now. We wouldn't have had a day like today with out your help. It's a blessing. It's a miracle. It's hope.
It's also a reminder to, in the words of Connor,
"Never Give Up!"
On your mark get set GO!
When we were holding the fundraiser for Connor we were lead to The Prayer Child Foundation. They donated $1000 to help Connor get his insulin pump. Last Saturday April 9th there was a Prayer Child run held to raise money for other children in need. Connor was invited to be the special ambassador and to count down the start of the race.
As they introduced Connor my heart just swelled with pride. We've come so far in the last few months. I was proud of how courageous he is and how strong he is. As his story was told I saw several people wipe their eyes, moved to tears by my cute 9 year old son. When asked if he'd like to say anything, all he could say was, "I'm just so glad to have my pump!"
It was raining and so very cold. You could see your breath! Crazy weather since it was only a few days before that the temperature was hovering around 100 degrees. That being said the bad weather didn't stop people from coming. There was still a great turn out.
As they introduced Connor my heart just swelled with pride. We've come so far in the last few months. I was proud of how courageous he is and how strong he is. As his story was told I saw several people wipe their eyes, moved to tears by my cute 9 year old son. When asked if he'd like to say anything, all he could say was, "I'm just so glad to have my pump!"
It was raining and so very cold. You could see your breath! Crazy weather since it was only a few days before that the temperature was hovering around 100 degrees. That being said the bad weather didn't stop people from coming. There was still a great turn out.
He was so excited to be able to count down to start the race. Who wouldn't want to hold a bullhorn and yell at a bunch of strangers?
Despite the cold and the rain it was such a fun day. What an amazing honor this was. I hope that the run raised a ton of money to be able to help other children with medical needs. The prayer child foundation was such a blessing to our family and to Connor. I hope that many children will feel of the love and hope that we have been witness to.
Monday, March 28, 2011
It's here, it's here, it's here!
Guess what the UPS man delivered to our house today?
Yep, that's right Connor got his pump!
As he opened the box to see what was inside he found lots of new gadgets that we
have to learn how to use.
A new meter that sends is blood sugar automatically to his pump.
Then there came the Care link system which is this awesome computer program that
we can plug his pump into and it will download all of the information off of his pump.
Then there it was,
The box that we've been waiting forever months for.
The Medtronic MiniMed Paradigm Revel Insulin Pump.
This is what we've all worked so hard for.
It's a little surreal to see him hold it in his hands.
This thing that seemed like a far off dream.
How blessed we are to have been surrounded by so many people
who cared so much to help make this dream a reality for Connor.
Here it is in all it's blue glory.
It's amazing how something so small can be so life changing.
This will give Connor the freedom that every child deserves,
the chance to be a kid!
It's funny how you can get so emotional over something cold and plastic.
As I sit here and look at this pump sitting on my kitchen table
I am overwhelmed to know how many hands came to our rescue.
This little piece of technological bliss is a tangible reminder of how loved we are
and how generous and kind others can be.
Once again THANK YOU from the bottom of my heart
for changing our lives forever.
Check back soon to see "Ol' Blue" in action.
We are waiting to attend our training class before we can begin pumping.
Which should be in the next week!
Thursday, March 10, 2011
We did it!!!!
It's been a long amazing journey. I can't believe all that we've accomplished together in the last month. We started out with the goal to help Connor get his insulin pump. I figured this would take months and months of planning garage sales, car washes, and saving every dime. I never dreamed that people would be so willing to help my son and our family. This whole experience has taught me to have faith. Faith in others, faith in my family, and faith in myself. It's so hard to ask others for help but what I've learned is that when you are in need there are others who are right there waiting, waiting to help you in any way that they can. People are more kind and generous than I'd ever imagined. Please watch the video below and see what you helped to make happen by being one of Connor's Commandos.
In a month we were able to raise not only enough money to get Connor his pump but to pay for all of his medical needs this year and then some. We are currently working with his doctor, the insurance company, and the pump manufacturer to get Connor what we've all worked so hard for, his pump! We are hoping that after some training he will be pumping in the next couple of weeks. (Pictures and update to come)
Again thank you from the bottom of my heart for changing our lives forever with your kindness. We will never forget how so many hands came to help in our time of need. Thank you for helping to ease some of the burden that my son must bear everyday for the rest of his life. Thank you for being that Elite Special Force that has once again brought a smile to his face. I know there will still be hard days ahead of us, and when those days come I will look at his pump and be reminded how loved we are and how blessed we've been to have had this experience of a life time and to have been witness to the miracle that has taken place in our family.
For an more detailed update please visit our family blog at Bless Our Nest
In a month we were able to raise not only enough money to get Connor his pump but to pay for all of his medical needs this year and then some. We are currently working with his doctor, the insurance company, and the pump manufacturer to get Connor what we've all worked so hard for, his pump! We are hoping that after some training he will be pumping in the next couple of weeks. (Pictures and update to come)
Again thank you from the bottom of my heart for changing our lives forever with your kindness. We will never forget how so many hands came to help in our time of need. Thank you for helping to ease some of the burden that my son must bear everyday for the rest of his life. Thank you for being that Elite Special Force that has once again brought a smile to his face. I know there will still be hard days ahead of us, and when those days come I will look at his pump and be reminded how loved we are and how blessed we've been to have had this experience of a life time and to have been witness to the miracle that has taken place in our family.
For an more detailed update please visit our family blog at Bless Our Nest
Tuesday, February 15, 2011
Update on our fundraiser
It's hard to know where to begin. I don't seem to have the right words to express the gratitude in my heart. Saying thank you just doesn't seem enough. I am in awe at the generosity of others. That people are so willing to help my son, a stranger to some, is simply amazing.
When we came up with the idea for the name Connor's Commandos it was originally the name for our Walk to Cure Diabetes JDRF team. My son loves G.I. Joe and anything that has to do with wearing camouflage. So we thought it was a fitting name. After starting this blog I looked up the definition of the term commando. According to Wikipedia the term commando stands for elite light infantry and/or special forces units. Those of you who have given of your time, have bought bake sale items, or have made donations in the form of monetary gifts or items that we can sell truly are an elite special force. We couldn't have come so far with out you! Because of you we have raised over $1000 for Connor. That doesn't include the items that have been donated waiting to be sold at our upcoming garage sale.
We were also blessed to be lead to a wonderful organization called The Prayer Child Foundation. They are an amazing foundation that helps children in need. We told them about our son Connor and what we were trying to do for him. We were just recently informed that Connor had been granted $1000 to put toward purchasing his insulin pump. Once again I have no words to convey the depth of my gratitude. All I can do is simply spread the word so that other deserving children may also be blessed like we have. The Prayer Child Foundation will be holding a walk/run on April 9, 2011 to raise money to help other children like my cute Connor. For more information please visit http://www.prayerchildrun.com/
In just a few weeks time we have raised just over $2000 of the $3000 that Connor needs to be able to get his insulin pump. I never dreamed we would have raised so much in such a short amount of time. I wish I could hug each of you and share how much joy and hope you have given to our family and my son. A simple thank you isn't enough. But, from the bottom of my heart THANK YOU so very much!
We are still collecting items to be sold at our garage sale. If you have any items that you no longer need and are willing to donate please let us know. We would be more than happy to come pick up your items from you. Still want to help but aren't sure how? Become one of Connor's Commandos and click on the donate button located on the left side of this blog.
For more about what's happening in our family please visit our other blog Bless Our Nest
When we came up with the idea for the name Connor's Commandos it was originally the name for our Walk to Cure Diabetes JDRF team. My son loves G.I. Joe and anything that has to do with wearing camouflage. So we thought it was a fitting name. After starting this blog I looked up the definition of the term commando. According to Wikipedia the term commando stands for elite light infantry and/or special forces units. Those of you who have given of your time, have bought bake sale items, or have made donations in the form of monetary gifts or items that we can sell truly are an elite special force. We couldn't have come so far with out you! Because of you we have raised over $1000 for Connor. That doesn't include the items that have been donated waiting to be sold at our upcoming garage sale.
We were also blessed to be lead to a wonderful organization called The Prayer Child Foundation. They are an amazing foundation that helps children in need. We told them about our son Connor and what we were trying to do for him. We were just recently informed that Connor had been granted $1000 to put toward purchasing his insulin pump. Once again I have no words to convey the depth of my gratitude. All I can do is simply spread the word so that other deserving children may also be blessed like we have. The Prayer Child Foundation will be holding a walk/run on April 9, 2011 to raise money to help other children like my cute Connor. For more information please visit http://www.prayerchildrun.com/
In just a few weeks time we have raised just over $2000 of the $3000 that Connor needs to be able to get his insulin pump. I never dreamed we would have raised so much in such a short amount of time. I wish I could hug each of you and share how much joy and hope you have given to our family and my son. A simple thank you isn't enough. But, from the bottom of my heart THANK YOU so very much!
We are still collecting items to be sold at our garage sale. If you have any items that you no longer need and are willing to donate please let us know. We would be more than happy to come pick up your items from you. Still want to help but aren't sure how? Become one of Connor's Commandos and click on the donate button located on the left side of this blog.
For more about what's happening in our family please visit our other blog Bless Our Nest
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