How interesting the last blog post was a good-bye letter to Mrs Osborn. This blog is about my anxiety regarding the upcoming school year.
We met the teacher and new nurse yesterday. She's certainly no Mrs. Osborn. I mean, seriously, there will never be another Mrs Osborn and Lord knows she left some pretty big shoes to fill.
Mrs. Hahler came flying into the meeting 100 MPH. Judging by the chicken scratch, the amount of talking and unorganized stack of papers she had ... that made a first impression on me I won't forget. I remember walking into a meeting full of staff members when we went through this before Kindergarten and within three minutes I felt so comfortable and knew Mrs Osborn was going to be an angel. She was cool, calm, collected and let me talk while jotting down notes.
Mrs. Hahler .... interrupted me every chance she could, didn't let the teacher have anything to say and just seemed ... I guess I don't even have words. But I left that 75 minute meeting frustrated as hell.
I was awake for two and a half hours in the middle of the night because I couldn't turn my brain off. I went through so many scenarios in my head (most of which will never happen, but hey ... at 2am your brain wants to go through it ALL).
Most definitely we are at square 1 this year. Something I sort of thought would happen, but now I know for certain. Ugh.
I woke up today knowing the poor teacher didn't really get to ask me anything nor did I get a chance to visit with her in regards to just every day routines with Trey, so I sent her a book ... I mean long email ... apologizing and yet just breaking down the day-to-day basics. It's my hope that this year Trey remains in his classrooms during the low blood sugars, instead of sitting down in the office missing valuable lesson time. Yes, the office will still be a safe place for him, however, I've made boxes for each room Trey will visit in hopes that he can just get a juice box and remain in class while the teacher calls the nurse to him. Will see how it works out.
As for the teacher, I have no issues or worries. Well, except for the fact there are 12 boys and 7 girls (POOR TEACHER) in the class. She is very good friends with Mrs Osborn so she's heard about Trey already and she also chatted with Mrs Salfrank about how we did things last year.
I just hope that Hahler calms down or something. I hate to write her off before dealing with her, but I just foresee a few weeks of some breakdowns for all of us.
Momma needs a drink.
Thursday, August 16, 2018
Tuesday, May 22, 2018
Dear Mrs. Osborn
Dear Mrs. Osborn;
I remember being told you were going to be my little boy's nurse, and the first thing I did was 'stalk' you on Facebook. I saw we had some mutual friends, so I asked them to tell me about you. Everyone, and I'm not exaggerating, said you were super sweet.
We met at the 504 meeting and I knew from the second I saw you, you were sweet. The way you looked at Trey and how you carried yourself, put me at ease. I will never be able to fully explain the anxiety I had to send my newly diagnosed T1 kid to Kindergarten. Terrified is an understatement. After speaking with you briefly, I knew Trey was going to be in great hands and I left that meeting feeling much more calm.
In the first couple days of school, we exchanged many text messages regarding Trey. Over the following weeks, I remember telling you "I trust you" and maybe to you that wasn't a big deal ... but for me it was a huge step. To this day, Heather, I trust you 100% with my son's life ... and I can assure you the number of people I trust 100% is VERY small.
In the last two years, you've been Trey's second mother (only much, much nicer than his first mom). You know the kid inside and out. You know what different carbs do to him, what carbs to avoid, how to dose for certain things and what he needs to come up or go down. You have gone above and beyond for not only him, but for me. You didn't need to text me daily to confirm snacks or give me his insulin dosage .. but you did. You didn't (and shouldn't!) have to let him play your phone during recess when he couldn't go outside due to blood sugar. You didn't have to stay at OMT late or arrive early because Trey's numbers were whacky. Jordan and I both told you, on more than one occasion, that you were too nice. Trey learned he could play you a little, but was quickly reminded of how good he had it when Mrs Wagner filled in. You weren't just his nurse - you were his best friend.
We joked with you after Bode was born, that you couldn't leave us and you had to promise to come back. We told Mr Ahlberg that he could never get rid of you, because we needed you. While I always knew there was a possibility that you would not be his school nurse, I can honestly say it never really carried much weight with me because Trey loved you ... we love you. But then the phone call happened ....
You don't know this, but after I hung up the phone with you, I collapsed on my kitchen floor and sobbed like someone had just died. It was me ... I felt like part of me died. It was like a bad dream and I didn't want to believe it to be true. I called Jordan and I couldn't even talk, I was crying so hard. Devastation is a good word to explain how I felt. The one person I trust with my kids life .. the one person who knows my kid like I do ... the one person my kid loved more than any other person at school ... was leaving. (Before I go on ... please know we hold nothing against you and understand this was not your choice)
So as I reflect back on the last two years, I am beyond grateful for all you did. I feel blessed that God sent his very best nurse to take care of my son, and to ease my mind/heart/fears. We are beyond lucky it was YOU, Heather. I tell everyone, and I mean it when I say it, you are truly an angel on earth. 100%. You helped Trey not only manage his diabetes, but you continued to teach him about it. You showed trust in him to learn to use his pump himself. You helped me learn to let go and hand the reigns over to someone else. It had to be you, the best of the best, to get us to the point we are at now and I hope you always know you will hold a very, very special piece of our hearts forever.
As we say good-bye to our favorite nurse, we learn to trust and love a new one. While I feel like I'm back at square 1, I know that's not true, as Trey has grown so much and knows so much already. God feels like it's time for us to handle a new challenge and perhaps that's what we need now. You're needed to change lives at SMS like you did at OMT ~ and perhaps this next step is what Trey needs to continue to grow more independent. It isn't going to be easy, but I know we can do it.
Thank you, from the bottom of my heart, and I truly wish you all the best as you move on in your career. There is a reason for it all. We love you ... and we always will.
Natalie Casanova
~ T1D Momma ~
I remember being told you were going to be my little boy's nurse, and the first thing I did was 'stalk' you on Facebook. I saw we had some mutual friends, so I asked them to tell me about you. Everyone, and I'm not exaggerating, said you were super sweet.
We met at the 504 meeting and I knew from the second I saw you, you were sweet. The way you looked at Trey and how you carried yourself, put me at ease. I will never be able to fully explain the anxiety I had to send my newly diagnosed T1 kid to Kindergarten. Terrified is an understatement. After speaking with you briefly, I knew Trey was going to be in great hands and I left that meeting feeling much more calm.
In the first couple days of school, we exchanged many text messages regarding Trey. Over the following weeks, I remember telling you "I trust you" and maybe to you that wasn't a big deal ... but for me it was a huge step. To this day, Heather, I trust you 100% with my son's life ... and I can assure you the number of people I trust 100% is VERY small.
In the last two years, you've been Trey's second mother (only much, much nicer than his first mom). You know the kid inside and out. You know what different carbs do to him, what carbs to avoid, how to dose for certain things and what he needs to come up or go down. You have gone above and beyond for not only him, but for me. You didn't need to text me daily to confirm snacks or give me his insulin dosage .. but you did. You didn't (and shouldn't!) have to let him play your phone during recess when he couldn't go outside due to blood sugar. You didn't have to stay at OMT late or arrive early because Trey's numbers were whacky. Jordan and I both told you, on more than one occasion, that you were too nice. Trey learned he could play you a little, but was quickly reminded of how good he had it when Mrs Wagner filled in. You weren't just his nurse - you were his best friend.
We joked with you after Bode was born, that you couldn't leave us and you had to promise to come back. We told Mr Ahlberg that he could never get rid of you, because we needed you. While I always knew there was a possibility that you would not be his school nurse, I can honestly say it never really carried much weight with me because Trey loved you ... we love you. But then the phone call happened ....
You don't know this, but after I hung up the phone with you, I collapsed on my kitchen floor and sobbed like someone had just died. It was me ... I felt like part of me died. It was like a bad dream and I didn't want to believe it to be true. I called Jordan and I couldn't even talk, I was crying so hard. Devastation is a good word to explain how I felt. The one person I trust with my kids life .. the one person who knows my kid like I do ... the one person my kid loved more than any other person at school ... was leaving. (Before I go on ... please know we hold nothing against you and understand this was not your choice)
So as I reflect back on the last two years, I am beyond grateful for all you did. I feel blessed that God sent his very best nurse to take care of my son, and to ease my mind/heart/fears. We are beyond lucky it was YOU, Heather. I tell everyone, and I mean it when I say it, you are truly an angel on earth. 100%. You helped Trey not only manage his diabetes, but you continued to teach him about it. You showed trust in him to learn to use his pump himself. You helped me learn to let go and hand the reigns over to someone else. It had to be you, the best of the best, to get us to the point we are at now and I hope you always know you will hold a very, very special piece of our hearts forever.
As we say good-bye to our favorite nurse, we learn to trust and love a new one. While I feel like I'm back at square 1, I know that's not true, as Trey has grown so much and knows so much already. God feels like it's time for us to handle a new challenge and perhaps that's what we need now. You're needed to change lives at SMS like you did at OMT ~ and perhaps this next step is what Trey needs to continue to grow more independent. It isn't going to be easy, but I know we can do it.
Thank you, from the bottom of my heart, and I truly wish you all the best as you move on in your career. There is a reason for it all. We love you ... and we always will.
Natalie Casanova
~ T1D Momma ~
Thursday, March 29, 2018
What's Normal?
It's such a fine line between normal and different.
As much as I remember being told Trey will lead a 'normal' life. I can't help but to think this isn't normal. It's different.
As much as we don't want Trey to be 'different', the truth is, that he is.
I was recently out of town and I dropped Trey off with my step-dad for a bit. I wanted Trey to have a snack before I left and Grandpa suggested an orange. "It's healthy". Yes, it is healthy, but it's not something Trey should really have for a snack without getting insulin for it. Is that normal for every person? No.
Trey was at 4x4 hockey on Sunday and had been on the ice for a long time. I could tell he was exhausted and needed a break, but do you think he would go to the bench to ask to sit? Hell no. Momma Bear went to the bench, called him over and told him to sit. His sugar was going up and he said, "I don't feel right. I'm sort of dizzy and I'm really tired." Normal?
Grocery shopping with Trey requires label checking. He sees something he wants, grabs it off the shelf, reads the carbs aloud, looks at me and either puts it in the cart or back on the shelf. Normal for a 7 year old?
Normal for a kid to know when he needs some protein to balance out his carbs in a snack/meal?
Being woke up in the night - sometimes more than once - to eat Skittles or drink a juicebox isn't normal.
Asking a child to poke his finger 9 times a day, to remember to take his kit with him everywhere he goes, to having to ask mom/dad for a snack before eating and always having to have a diet soda instead of fruit juice isn't normal. Unless you're T1.
But he plays hockey, he eats pizza and McDonalds, he goes to birthday parties and eats a cupcake/cake. Normal!
Truth is he isn't normal - this life we live isn't normal. It's different, and it's harder than hell. We put on a brave face and plow our way through every 24 hours and if you didn't know our situation, you'd assume everything is well. Truth is we don't get enough sleep; truth is we have diabetes on the brain 24/7/365. Truth is every food item I look at, a number is associated with it. (Example: I once saw a kid eat an applesauce pouch, a Slo-Poke candy, a Dilly Bar and a pack of fruit snacks all in the course of one hockey game. Want to know what popped into my head? 10, 35, 24, 20. In that order. Carb counts for everything that child ate.) It's not because I'm trying to - it's because for the last 2 years that's how I've had to look at food and it's just how my brain works now. Truth is T1 has put a strain on our family. Truth is, Jordan and I don't go anywhere or do anything with friends because the question looms "Who's going to watch Trey?" Truth is, it's also unfair to Delanie.
Look, I'm not trying to have everyone say "Poor Natalie". Read it how you want, but this life isn't for the weak. It's a daily struggle and hell, sometimes it's an hourly struggle. Jordan and I are in control of keeping our child alive and making the right decisions at the spur of the moment. Even his school nurse verifies with me different things. It's exhausting! But here we are - living the life we were handed. We don't know if we are doing it right, we don't know if we could be better, we are just doing the best we can.
There are still days I go through the grieving process. There are days I feel so totally defeated by this disease, I cry for hours. Some days we nail it and we smile and give high-fives. Some days I'm so pissed off about it, that I wonder what we did to deserve this battle. Sometimes I am thankful that it's not worse (such a touchy phase. Please don't ever, ever say this to a T1 family). We miss the easy life ... the life where Trey ate anything he wanted and we got to sleep 8 solid hours. The life where anyone could watch Trey for 3 hours so mom and go to Lagers. . The life where we didn't even know what a normal blood sugar was or how disgusting the smell of insulin is.
But it's not our life. Our life is complicated. It's not normal - it's different. So many people don't understand it; and truthfully until you live it you can't fully wrap your head around it either. But friends and even family just don't understand how much effort and thought it takes to make sure Trey is OK. From extra CGM and pump sites, to making sure there is the correct foods/drinks for him, to monitor his activity level, to having someone 'watch' him.
You can't just take Trey to an event without him having his kit, a snack and a bottle of water. You can't allow him to eat foods without having to give him insulin. If his sugar is high you don't feed him more carbs, therefore you must know the carb counts for foods and know he needs protein to go with it. Just because a food is healthy - it's not always safe for Trey's blood sugar. Banana??? No way. EVERY DETAIL OF OUR LIVES revolves around Trey. Everything. Normal??? Not for most, but I guess for us, it is.
As much as I remember being told Trey will lead a 'normal' life. I can't help but to think this isn't normal. It's different.
As much as we don't want Trey to be 'different', the truth is, that he is.
I was recently out of town and I dropped Trey off with my step-dad for a bit. I wanted Trey to have a snack before I left and Grandpa suggested an orange. "It's healthy". Yes, it is healthy, but it's not something Trey should really have for a snack without getting insulin for it. Is that normal for every person? No.
Trey was at 4x4 hockey on Sunday and had been on the ice for a long time. I could tell he was exhausted and needed a break, but do you think he would go to the bench to ask to sit? Hell no. Momma Bear went to the bench, called him over and told him to sit. His sugar was going up and he said, "I don't feel right. I'm sort of dizzy and I'm really tired." Normal?
Grocery shopping with Trey requires label checking. He sees something he wants, grabs it off the shelf, reads the carbs aloud, looks at me and either puts it in the cart or back on the shelf. Normal for a 7 year old?
Normal for a kid to know when he needs some protein to balance out his carbs in a snack/meal?
Being woke up in the night - sometimes more than once - to eat Skittles or drink a juicebox isn't normal.
Asking a child to poke his finger 9 times a day, to remember to take his kit with him everywhere he goes, to having to ask mom/dad for a snack before eating and always having to have a diet soda instead of fruit juice isn't normal. Unless you're T1.
But he plays hockey, he eats pizza and McDonalds, he goes to birthday parties and eats a cupcake/cake. Normal!
Truth is he isn't normal - this life we live isn't normal. It's different, and it's harder than hell. We put on a brave face and plow our way through every 24 hours and if you didn't know our situation, you'd assume everything is well. Truth is we don't get enough sleep; truth is we have diabetes on the brain 24/7/365. Truth is every food item I look at, a number is associated with it. (Example: I once saw a kid eat an applesauce pouch, a Slo-Poke candy, a Dilly Bar and a pack of fruit snacks all in the course of one hockey game. Want to know what popped into my head? 10, 35, 24, 20. In that order. Carb counts for everything that child ate.) It's not because I'm trying to - it's because for the last 2 years that's how I've had to look at food and it's just how my brain works now. Truth is T1 has put a strain on our family. Truth is, Jordan and I don't go anywhere or do anything with friends because the question looms "Who's going to watch Trey?" Truth is, it's also unfair to Delanie.
Look, I'm not trying to have everyone say "Poor Natalie". Read it how you want, but this life isn't for the weak. It's a daily struggle and hell, sometimes it's an hourly struggle. Jordan and I are in control of keeping our child alive and making the right decisions at the spur of the moment. Even his school nurse verifies with me different things. It's exhausting! But here we are - living the life we were handed. We don't know if we are doing it right, we don't know if we could be better, we are just doing the best we can.
There are still days I go through the grieving process. There are days I feel so totally defeated by this disease, I cry for hours. Some days we nail it and we smile and give high-fives. Some days I'm so pissed off about it, that I wonder what we did to deserve this battle. Sometimes I am thankful that it's not worse (such a touchy phase. Please don't ever, ever say this to a T1 family). We miss the easy life ... the life where Trey ate anything he wanted and we got to sleep 8 solid hours. The life where anyone could watch Trey for 3 hours so mom and go to Lagers. . The life where we didn't even know what a normal blood sugar was or how disgusting the smell of insulin is.
But it's not our life. Our life is complicated. It's not normal - it's different. So many people don't understand it; and truthfully until you live it you can't fully wrap your head around it either. But friends and even family just don't understand how much effort and thought it takes to make sure Trey is OK. From extra CGM and pump sites, to making sure there is the correct foods/drinks for him, to monitor his activity level, to having someone 'watch' him.
You can't just take Trey to an event without him having his kit, a snack and a bottle of water. You can't allow him to eat foods without having to give him insulin. If his sugar is high you don't feed him more carbs, therefore you must know the carb counts for foods and know he needs protein to go with it. Just because a food is healthy - it's not always safe for Trey's blood sugar. Banana??? No way. EVERY DETAIL OF OUR LIVES revolves around Trey. Everything. Normal??? Not for most, but I guess for us, it is.
Sunday, March 11, 2018
Happy 2 Year Diaversary
"Being diagnosed with diabetes isn't something to celebrate, but the
hard work, perseverance and bravery you have shown throughout your
journey definitely is."
Two years ago I sat in a doctors office with Trey hearing the words "Trey has Type 1 Juvenile Diabetes." It is a day I won't ever forget. I remember calling the doctors office at 8:02am that morning asking for a diabetes test; I remember looking at Trey sitting on the couch looking exhausted and not wanting to eat breakfast; I remember the nurse squinting her eyes at me when she asked why I wanted him tested for diabetes; I remember the look on Dr Biegler's face when he came in the room after getting the urine results; I remember holding Trey down on the table in the lab as they drew blood from his arm as I reassured him he was so brave and strong; I remember holding Trey on my lap when Dr Biegler came in the room for the second time and him saying "I don't like this ..." and how he wiped his eyes when he said the dreadful words to me. I remember looking at Trey and with tears in my eyes, I gave him my bravest smile and then texted Jordan to please come to the doctors office. It wasn't a shock for me, but it still hurt. Like I often do in tough situations, I pull up my big girl panties and forge ahead to get business done and then when no one is looking, I let it all out and have the breakdown.
Two years has felt both like two days and yet 20 years all at the same time. When I was talking to Trey about his upcoming 2 year diaversary, I asked him if it has felt like he's had T1 for a long time or no. He said, "Like 1,000 days yeah."
I look at how far he (and we!) has come in two years. How at the beginning of this journey, we didn't know what foods to buy, how to adjust insulin, what a CGM was, etc. We have learned so much, and we continue to learn it. Trey has always been great at his site changes and about foods, but he's becoming so much more aware of how his body feels when he is low or high. He really has become more independent and more responsible about his care. During school hours, he watches the clock and knows when it's time to check his sugar. He knows to check carb counts on the classroom snack to see if it is within his range, and if not, he picks from his own bucket. When he has school lunch, he knows to ask for things "without the bun please" and that by just looking at a banana, his blood sugar rises (ok, so that's not quite accurate but bananas are a major No-No for him).
I look at the last two years and see all the people we have met because of Type 1. I look at the money we (YOU!) have raised for JDRF to help find a cure. I see the people who we have helped in one way or another because of us speaking up about T1D. I think of Trey Bagwell who will forever be in our hearts for all he did and I know him being in Aberdeen was for us - not for the Wings. I see the members on T1D Trey's Facebook page and realize how many people we have educated on the facts of T1D. I smile when I remember the newspaper wanting to interview him and help spread awareness. We are making a difference and that is something I am beyond proud of. Our work isn't done though.
Trey has an Instagram page with photos of his Dexcom numbers and other things. Today I received a message from a family in Pennsylvania who wanted to thank Trey for posting pictures because her 6 year old T1 daughter wanted to try the Dexcom after seeing Trey's photos. The mother and I began a conversation on T1D and she told me she never thought someone in South Dakota would be the person she and her daughter needed, but we were and they found Trey's page so inspiring. The little girl asked her mom if her and Trey could have a play-date and be friends. I sobbed ... I'm so happy that because of something as simple as photos of Trey's life with T1D, he touched another family and now their daughter is willing to wear a Dexcom.
Trey Thomas, I am so proud of you for how you handle your disease. You are so strong and brave and you are a terrific advocate for those living with T1D. How you've learned to listen to your body is something I am most proud of. I love that you explain your finger pokes to those who watch and ask questions. I love that you know carb counts on foods and how you know what are good/bad choices depending on your blood sugar. It makes me smile to know how many lives you've touched and how many others you've helped out just by being open and honest about the disease. It warms my heart that you, like me, get upset when we hear of a new T1 diagnoses and that you say "We need to help them."
Happy 2 year Diaversary, buddy. Today we celebrate another year of life of living with T1, how far you have come, how much stronger you are and your bravery. "Throughout your diabetes journey, I have seen you grow stronger and deal with things no one even knew you were capable of. Being diagnosed with diabetes is an overwhelming experience, and living with it requires hard work, resilience, persistence and courage. That is something to be so, so proud of. Today, we do not celebrate the highs and lows, but rather the strength you have shown by dealing with them all day, every day." (not written by me, but so fitting)
730 Days
6,932 Finger Pokes (average)
17 Vials of insulin
7 Pen vials of insulin
99 CGM site changes
70 pump site changes
100s of manual injections prior to pump
1 kick-ass little boy
Two years ago I sat in a doctors office with Trey hearing the words "Trey has Type 1 Juvenile Diabetes." It is a day I won't ever forget. I remember calling the doctors office at 8:02am that morning asking for a diabetes test; I remember looking at Trey sitting on the couch looking exhausted and not wanting to eat breakfast; I remember the nurse squinting her eyes at me when she asked why I wanted him tested for diabetes; I remember the look on Dr Biegler's face when he came in the room after getting the urine results; I remember holding Trey down on the table in the lab as they drew blood from his arm as I reassured him he was so brave and strong; I remember holding Trey on my lap when Dr Biegler came in the room for the second time and him saying "I don't like this ..." and how he wiped his eyes when he said the dreadful words to me. I remember looking at Trey and with tears in my eyes, I gave him my bravest smile and then texted Jordan to please come to the doctors office. It wasn't a shock for me, but it still hurt. Like I often do in tough situations, I pull up my big girl panties and forge ahead to get business done and then when no one is looking, I let it all out and have the breakdown.
Two years has felt both like two days and yet 20 years all at the same time. When I was talking to Trey about his upcoming 2 year diaversary, I asked him if it has felt like he's had T1 for a long time or no. He said, "Like 1,000 days yeah."
I look at how far he (and we!) has come in two years. How at the beginning of this journey, we didn't know what foods to buy, how to adjust insulin, what a CGM was, etc. We have learned so much, and we continue to learn it. Trey has always been great at his site changes and about foods, but he's becoming so much more aware of how his body feels when he is low or high. He really has become more independent and more responsible about his care. During school hours, he watches the clock and knows when it's time to check his sugar. He knows to check carb counts on the classroom snack to see if it is within his range, and if not, he picks from his own bucket. When he has school lunch, he knows to ask for things "without the bun please" and that by just looking at a banana, his blood sugar rises (ok, so that's not quite accurate but bananas are a major No-No for him).
I look at the last two years and see all the people we have met because of Type 1. I look at the money we (YOU!) have raised for JDRF to help find a cure. I see the people who we have helped in one way or another because of us speaking up about T1D. I think of Trey Bagwell who will forever be in our hearts for all he did and I know him being in Aberdeen was for us - not for the Wings. I see the members on T1D Trey's Facebook page and realize how many people we have educated on the facts of T1D. I smile when I remember the newspaper wanting to interview him and help spread awareness. We are making a difference and that is something I am beyond proud of. Our work isn't done though.
Trey has an Instagram page with photos of his Dexcom numbers and other things. Today I received a message from a family in Pennsylvania who wanted to thank Trey for posting pictures because her 6 year old T1 daughter wanted to try the Dexcom after seeing Trey's photos. The mother and I began a conversation on T1D and she told me she never thought someone in South Dakota would be the person she and her daughter needed, but we were and they found Trey's page so inspiring. The little girl asked her mom if her and Trey could have a play-date and be friends. I sobbed ... I'm so happy that because of something as simple as photos of Trey's life with T1D, he touched another family and now their daughter is willing to wear a Dexcom.
Trey Thomas, I am so proud of you for how you handle your disease. You are so strong and brave and you are a terrific advocate for those living with T1D. How you've learned to listen to your body is something I am most proud of. I love that you explain your finger pokes to those who watch and ask questions. I love that you know carb counts on foods and how you know what are good/bad choices depending on your blood sugar. It makes me smile to know how many lives you've touched and how many others you've helped out just by being open and honest about the disease. It warms my heart that you, like me, get upset when we hear of a new T1 diagnoses and that you say "We need to help them."
Happy 2 year Diaversary, buddy. Today we celebrate another year of life of living with T1, how far you have come, how much stronger you are and your bravery. "Throughout your diabetes journey, I have seen you grow stronger and deal with things no one even knew you were capable of. Being diagnosed with diabetes is an overwhelming experience, and living with it requires hard work, resilience, persistence and courage. That is something to be so, so proud of. Today, we do not celebrate the highs and lows, but rather the strength you have shown by dealing with them all day, every day." (not written by me, but so fitting)
730 Days
6,932 Finger Pokes (average)
17 Vials of insulin
7 Pen vials of insulin
99 CGM site changes
70 pump site changes
100s of manual injections prior to pump
1 kick-ass little boy
Wednesday, March 7, 2018
F U T1D
I don't even know how to explain how I feel about today. My mood today hasn't been great thanks to the lack of sleep the last couple nights. Sorry ... I'm a person who needs her sleep. While I'd love a solid 8 hours ... I'm down to calling 5 1/2-6 sufficient.
Trey has a head old which means whacky sugars. We also have had 2 snow days from school so the kids have been at home, playing electronics and not following a schedule or getting 45 minutes of recess time (although I did make them go outside each day). What I'm getting at is that Trey's been running high for about ... 3 days. We are using oils in a diffuser and on his feet as well as sucking on vitamin c drops but it is what it is ... an illness.
Then last night T1D decides to be an asshole and hover at about 75-80 all night long. While that's a great blood sugar, it's not so great for night-time. In addition, my alert is set at 75 so my phone will buzz when he gets to 75 and his alert is set at 80 so his monitor buzzes at 80. There was A LOT of buzzing last night. At 3am I wake - because I always wake at 3am - and I decide to set a temp basal on his pump so he gets a little less insulin for the next three hours because Momma needs her beauty rest. Wouldn't you know that 800 dump trucks decide this is the best time to start hauling snow out of town? About every 15 seconds there is a dump truck going 50mph down 8th Ave hitting that little sewer hole that is RIGHT OUTSIDE MY BEDROOM WINDOW which makes it sound like whatever vehicle hits it, is coming through my bedroom wall. It was 4:18am the last time I looked at the clock. 6:39am my alarm goes off and I knew from the second my eyes opened .... momma was in a bad mood.
So Trey has peanut butter toast and bacon for breakfast. I only allowed one piece because lately 2 pieces of toast sends him over 200. Jordan doses insulin and away they go off to school. About 8:30 I check his CGM number and he's 289. WHAT??? I confirm with Jordan insulin was given. At 9:15 I get a message from Nurse Heather that says 297 with a sad face. Yep ... awesome. She gives him a snack, doses insulin and we wait. Soon we are looking at 350 and I knew something was wrong. More insulin given and a conversation with Jordan about what we should do. It's creeping up to lunch time and his CGM is now reading "HIGH" which means it's over 400.
Keep in mind momma was 1) short on sleep 2) angry as soon as she woke up 3) working with 3 toddlers, 2 infants and 2 more extra drop-in children today 4) trying to prepare daycare kids lunch 5) arguing with a fellow DoTerra oil user/seller about benefits of oils and T1D 6) listening to her husband asking "what should I do?"
I'm now worried about Trey. Obviously something isn't right and he needs to have his ketones checked and probably needs a pump change. Jordan went to school - Moderate ketones and sugar 347. Trey ate lunch, went outside and sugars continued to climb so he changed the pump site. Ketones are now gone, sugar coming down fairly well so all is well.
2:08pm (3 of 7 daycare kids awake already ... just tossing this fun fact in there for drama effect) message from Nurse Heather "60 - juicing".
Oh. My. God.
From 400 to 60. I honestly wanted to cry, scream, throw up, run away, and kick the cat. I just kept saying "poor Trey ... his poor little body. What does a high to low sugar like that do to my little guy?" Jordan was quite worried as well. So was Nurse Heather. He ended up having four juice boxes between 2 and 3:10. He also had applesauce. He rode between 70-75 from the time he got home at 3:15 until supper at 6pm. When he walked in the door, he looked like total shit. He was pale, he had dark bags under his eyes, he looked like he hadn't slept in weeks. I asked if he was OK and he said no. He said he just feels bad. Couldn't explain to me what it was, but he didn't feel good. Right before supper he was at 84. Spaghetti (whole grain pasta), 2 breadsticks, Fairlife milk. He went up to 150 but by 7:30 he was back down to the perfect 100. Bag of cheetos at bedtime and now 107.
Sometimes I just don't understand. I mean, I usually don't understand, but on days like today, when diabetes flat out kicks his (our) ass ... it sucks the life right out of you. I can't imagine what Trey felt today .. the high down to the low, all the sugar from juice in his system ... all of it. He missed so much class time today because he was in the office getting 'fixed up'. I was exhausted from the worry. From trying to figure out what to do next, how many carbs to say to give and when to give it. The constant checking of the CGM to see if he was finally trending down and then trending back up. Nurse Heather actually called me about 3:06 today because as Trey was in line for the bus in the gym, he really didn't feel good so he grabbed a teacher and she took him back down to the office. He was 56 via finger poke. Heather made him slam a juice as she called me and asked if he should ride the bus.
It's scary sometimes. People tell us we are strong and Trey is brave and strong and the truth is - we really have to be. It truly is a mater of life and death and we all do have to work together and be on the same page because if we aren't ... Trey isn't being taken care of and I can't lose my little boy. It's reality - it's a reality that no one wants to talk about. Many people don't even realize T1 can kill a person. No, we don't like to focus on the bad (blindness, numbness in the nerves, losing limbs, loss of kidney's) but it's reality. It is also reality that T1 people can live a very long, full, 'healthy' life. It's a fact that T1's are some of the strongest people on the planet. It's a fact that T1's are brave. It's also a fact that there are days that T1 kicks your ass and beats you down and reduces you to tears and you question "why?" because you're so tired and frustrated.
Real life ... real disease .. real people ... really sucks. Truly.
Thank God tomorrow is another day.
Trey has a head old which means whacky sugars. We also have had 2 snow days from school so the kids have been at home, playing electronics and not following a schedule or getting 45 minutes of recess time (although I did make them go outside each day). What I'm getting at is that Trey's been running high for about ... 3 days. We are using oils in a diffuser and on his feet as well as sucking on vitamin c drops but it is what it is ... an illness.
Then last night T1D decides to be an asshole and hover at about 75-80 all night long. While that's a great blood sugar, it's not so great for night-time. In addition, my alert is set at 75 so my phone will buzz when he gets to 75 and his alert is set at 80 so his monitor buzzes at 80. There was A LOT of buzzing last night. At 3am I wake - because I always wake at 3am - and I decide to set a temp basal on his pump so he gets a little less insulin for the next three hours because Momma needs her beauty rest. Wouldn't you know that 800 dump trucks decide this is the best time to start hauling snow out of town? About every 15 seconds there is a dump truck going 50mph down 8th Ave hitting that little sewer hole that is RIGHT OUTSIDE MY BEDROOM WINDOW which makes it sound like whatever vehicle hits it, is coming through my bedroom wall. It was 4:18am the last time I looked at the clock. 6:39am my alarm goes off and I knew from the second my eyes opened .... momma was in a bad mood.
So Trey has peanut butter toast and bacon for breakfast. I only allowed one piece because lately 2 pieces of toast sends him over 200. Jordan doses insulin and away they go off to school. About 8:30 I check his CGM number and he's 289. WHAT??? I confirm with Jordan insulin was given. At 9:15 I get a message from Nurse Heather that says 297 with a sad face. Yep ... awesome. She gives him a snack, doses insulin and we wait. Soon we are looking at 350 and I knew something was wrong. More insulin given and a conversation with Jordan about what we should do. It's creeping up to lunch time and his CGM is now reading "HIGH" which means it's over 400.
Keep in mind momma was 1) short on sleep 2) angry as soon as she woke up 3) working with 3 toddlers, 2 infants and 2 more extra drop-in children today 4) trying to prepare daycare kids lunch 5) arguing with a fellow DoTerra oil user/seller about benefits of oils and T1D 6) listening to her husband asking "what should I do?"
I'm now worried about Trey. Obviously something isn't right and he needs to have his ketones checked and probably needs a pump change. Jordan went to school - Moderate ketones and sugar 347. Trey ate lunch, went outside and sugars continued to climb so he changed the pump site. Ketones are now gone, sugar coming down fairly well so all is well.
2:08pm (3 of 7 daycare kids awake already ... just tossing this fun fact in there for drama effect) message from Nurse Heather "60 - juicing".
Oh. My. God.
From 400 to 60. I honestly wanted to cry, scream, throw up, run away, and kick the cat. I just kept saying "poor Trey ... his poor little body. What does a high to low sugar like that do to my little guy?" Jordan was quite worried as well. So was Nurse Heather. He ended up having four juice boxes between 2 and 3:10. He also had applesauce. He rode between 70-75 from the time he got home at 3:15 until supper at 6pm. When he walked in the door, he looked like total shit. He was pale, he had dark bags under his eyes, he looked like he hadn't slept in weeks. I asked if he was OK and he said no. He said he just feels bad. Couldn't explain to me what it was, but he didn't feel good. Right before supper he was at 84. Spaghetti (whole grain pasta), 2 breadsticks, Fairlife milk. He went up to 150 but by 7:30 he was back down to the perfect 100. Bag of cheetos at bedtime and now 107.
Sometimes I just don't understand. I mean, I usually don't understand, but on days like today, when diabetes flat out kicks his (our) ass ... it sucks the life right out of you. I can't imagine what Trey felt today .. the high down to the low, all the sugar from juice in his system ... all of it. He missed so much class time today because he was in the office getting 'fixed up'. I was exhausted from the worry. From trying to figure out what to do next, how many carbs to say to give and when to give it. The constant checking of the CGM to see if he was finally trending down and then trending back up. Nurse Heather actually called me about 3:06 today because as Trey was in line for the bus in the gym, he really didn't feel good so he grabbed a teacher and she took him back down to the office. He was 56 via finger poke. Heather made him slam a juice as she called me and asked if he should ride the bus.
It's scary sometimes. People tell us we are strong and Trey is brave and strong and the truth is - we really have to be. It truly is a mater of life and death and we all do have to work together and be on the same page because if we aren't ... Trey isn't being taken care of and I can't lose my little boy. It's reality - it's a reality that no one wants to talk about. Many people don't even realize T1 can kill a person. No, we don't like to focus on the bad (blindness, numbness in the nerves, losing limbs, loss of kidney's) but it's reality. It is also reality that T1 people can live a very long, full, 'healthy' life. It's a fact that T1's are some of the strongest people on the planet. It's a fact that T1's are brave. It's also a fact that there are days that T1 kicks your ass and beats you down and reduces you to tears and you question "why?" because you're so tired and frustrated.
Real life ... real disease .. real people ... really sucks. Truly.
Thank God tomorrow is another day.
Saturday, March 3, 2018
Atsmosphere
LOWS ... we've been dealing with a week of constant lows. It's not typical for Trey. He's gone through four juice boxes at school this week. They haven't been scary lows, we've been able to get him up ok, but he doesn't climb sky high from 10 carbs like normal.
Not that I like lows, but they are easier to bring up than trying to bring a high down. He feels low, he eats some sugar, and he goes back to normal activity in 15-20 minutes. Highs seem to take hours to come down and it's frustrating and annoying.
Speaking with a couple other people who relate to the T1 world -- they, too, have been lower than normal this week. Means there is something in the air! Crazy, right? It's so true though. Barometric pressures ... temps ... moon ... friggin everything affects sugars. I never knew but quickly discovered it.
March brings our 3 month Endo appointment in Sioux Falls. Hoping for a good A1C again ... under 7.5 would be ideal. Hockey has been over for a month, but he will begin 4 on 4 hockey for 4 weeks here pretty soon. It will be good to get him back on the ice to work on the skills. We also will be heading to Sioux Falls for a mini vacation as we will take in the college hockey tournament. We had hoped Ohio State would get put in the SF bracket but it's not looking good for that. Which is good though ... means OSU is ranked high enough to play closer to home. Now we hope St Cloud will beat out UND (SORRY FRIENDS) and they come to SF as there are a few former Wings players on the Huskies team.
Spring is right around the corner .. my favorite month. Let it melt and give me tulips! !
Not that I like lows, but they are easier to bring up than trying to bring a high down. He feels low, he eats some sugar, and he goes back to normal activity in 15-20 minutes. Highs seem to take hours to come down and it's frustrating and annoying.
Speaking with a couple other people who relate to the T1 world -- they, too, have been lower than normal this week. Means there is something in the air! Crazy, right? It's so true though. Barometric pressures ... temps ... moon ... friggin everything affects sugars. I never knew but quickly discovered it.
March brings our 3 month Endo appointment in Sioux Falls. Hoping for a good A1C again ... under 7.5 would be ideal. Hockey has been over for a month, but he will begin 4 on 4 hockey for 4 weeks here pretty soon. It will be good to get him back on the ice to work on the skills. We also will be heading to Sioux Falls for a mini vacation as we will take in the college hockey tournament. We had hoped Ohio State would get put in the SF bracket but it's not looking good for that. Which is good though ... means OSU is ranked high enough to play closer to home. Now we hope St Cloud will beat out UND (SORRY FRIENDS) and they come to SF as there are a few former Wings players on the Huskies team.
Spring is right around the corner .. my favorite month. Let it melt and give me tulips! !
Friday, February 23, 2018
Who wants a job?
We are spoiled having Heather as our school nurse ... I'm well aware. I have heard stories from others who don't have a good school nurse and all the extra stress that causes not only the parents, but the T1 child him/herself. I don't take her for granted and I've expressed to her many times our gratitude and that she can never leave us. HaHa
This week her poor infant is sick ... like super sick. He's in the hospital and they don't really know what's wrong. All tests come back negative but he's basically having Influenza symptoms. It breaks my heart for her and for the little guy as a sick child is never fun, but a sick, hospitalized infant is down-right awful.
We have had a substitute nurse this week, obviously. Unfortunately, it's the old hag that we've dealt with before who Trey really does not like. Jordan and I try to keep Trey level headed about her and be sure he's respectful to her, even if he doesn't like her. Last year his Kindergarten Teacher made some comments to Jordan and I about how this old hag isn't really very friendly and how she felt bad for Trey because he was so scared of her and nervous around her.
We've dealt with her a few times this school year already, and every time Trey dreads it but he keeps an open mind. Now, Trey handles much of his care himself. He knows what time's he's supposed to check his sugar, he knows about how many carbs his snacks should be and basically the only need for the nurse is to administer insulin for him as I'm not ready for him to do that himself yet. One day he told me, "She's not that bad I guess. She talked to me about hockey a little bit." which made me feel good because I know that's something to make him comfortable.
According to the 504 Plan I have typed up for the school, the nurse is to contact me with any questions. Heather has it written for her Subs to contact me to let me know what the pre/post blood sugar is for meals and snacks and to work with me on the proper snack carb count. Wednesday I heard from the old hag once ... at the end of the day. Thursday I heard from the hag once ... at 2:45.
(504 violation x2) You already saw the convo her and I had via the phone yesterday on the facebook page. When Trey got home at 3:10 he came downstairs like always and said, "Mommy ... today Kathy was kinda mean again. When I say she was mean, she just has a really bad mean voice. I was at recess and then I had PE and I buzzed low when Mrs Falk was talking to our class. I told Kathy I was low and she said, 'Go back and listen to Mrs Falk. School is almost done.' so I did but I tried really hard not to cry because I felt low too and I buzzed."
If you know me ... you know I had steam rolling out of my ears already after the phone convo with her but after talking to my son about it, I was showing those Devil Horns.
You sent a child ... who was buzzing low ... back to his class without treating the low sugar because school was almost out???????? 504 Violation His sugar was 73 with an arrow kitty-korner down on the CGM. He had 15 minutes of school left and a 10 minute bus ride home. 25 minutes ... dropping sugar and you didn't want to deal with him for 5 seconds to give him a damn juice box??? REALLY?
The reason she eventually called me was because the teacher saw my text message I sent to her 15 minutes prior to the phone call.
I realize I am a protective parent. I realize we are spoiled with Heather (again). I realize I don't have the most patience in the world. I realize Trey is my baby. But what I don't understand is why in the hell this woman even agrees to substitute. You have to give insulin MAYBE three times a day to a child via a pump. THAT'S IT. He does the rest on his own!!! I have carb counts written down on everything that is in his snack bin and in his "Low Sugar Treatment" bin. I have a note in his lunch box EVERY DAY with the amount of foods and the carb counts on it. I can't make it any easier!! Yet she's so inconvenienced by him telling her he's low in the middle of a lecture by the Guidance Counselor to give him a juice box???? Furious.
So today, 9:08 I get a text message from the teacher at school that says, "Trey feels low. 80 finger poke. Can he have a snack now or does he have to wait until 9:15? No nurse here yet." I tell her he can have 10-12 carbs now. Then wrote back "Thanks. Nurse here now." followed with the eye-roll emoji face. That's all I needed to know that the teacher wasn't impressed with this old hag either. I sent it to Jordan who went to the school and talked to the teacher about what she's seen this week and what happened yesterday to be sure Trey wasn't just telling us a lie. Nope ... Trey was right. The teacher said she's not impressed with how this lady does it either and that she's not very friendly. She says Trey is very independent in his care and she can tell how nervous he is with the old hag. Yesterday once he asked the teacher to help him and to not tell the nurse. She said she was surprised he went to the old hag yesterday afternoon when he was low because he tries to avoid her but he did what he has been told to do and she knew if he was willing to deal with her - he truly didn't feel well.
Got an alert of a 64 sugar after his lunch today. She called me, "Trey came in from recess and told his teacher he didn't feel good but he didn't come and tell me. She called me and he's having a juice box now that she gave him but what else do you want me to do." I said to feed him whatever he picks up to 20 carbs. She says, "oookkk then." and hangs up. Ya know - I don't blame Trey at all. Just talking to her for 34 seconds on the phone is enough to tell me what she's like in person.
We will be visiting with the Nurse Supervisor on Monday and inform her that this old hag will not be taking care of Trey again. She has two months until official retirement but if she can't do her god damn job then I sure as hell won't make her. It's MY job to be sure my kid is safe and taken care of, so I'll keep doing MY job.
This week her poor infant is sick ... like super sick. He's in the hospital and they don't really know what's wrong. All tests come back negative but he's basically having Influenza symptoms. It breaks my heart for her and for the little guy as a sick child is never fun, but a sick, hospitalized infant is down-right awful.
We have had a substitute nurse this week, obviously. Unfortunately, it's the old hag that we've dealt with before who Trey really does not like. Jordan and I try to keep Trey level headed about her and be sure he's respectful to her, even if he doesn't like her. Last year his Kindergarten Teacher made some comments to Jordan and I about how this old hag isn't really very friendly and how she felt bad for Trey because he was so scared of her and nervous around her.
We've dealt with her a few times this school year already, and every time Trey dreads it but he keeps an open mind. Now, Trey handles much of his care himself. He knows what time's he's supposed to check his sugar, he knows about how many carbs his snacks should be and basically the only need for the nurse is to administer insulin for him as I'm not ready for him to do that himself yet. One day he told me, "She's not that bad I guess. She talked to me about hockey a little bit." which made me feel good because I know that's something to make him comfortable.
According to the 504 Plan I have typed up for the school, the nurse is to contact me with any questions. Heather has it written for her Subs to contact me to let me know what the pre/post blood sugar is for meals and snacks and to work with me on the proper snack carb count. Wednesday I heard from the old hag once ... at the end of the day. Thursday I heard from the hag once ... at 2:45.
(504 violation x2) You already saw the convo her and I had via the phone yesterday on the facebook page. When Trey got home at 3:10 he came downstairs like always and said, "Mommy ... today Kathy was kinda mean again. When I say she was mean, she just has a really bad mean voice. I was at recess and then I had PE and I buzzed low when Mrs Falk was talking to our class. I told Kathy I was low and she said, 'Go back and listen to Mrs Falk. School is almost done.' so I did but I tried really hard not to cry because I felt low too and I buzzed."
If you know me ... you know I had steam rolling out of my ears already after the phone convo with her but after talking to my son about it, I was showing those Devil Horns.
You sent a child ... who was buzzing low ... back to his class without treating the low sugar because school was almost out???????? 504 Violation His sugar was 73 with an arrow kitty-korner down on the CGM. He had 15 minutes of school left and a 10 minute bus ride home. 25 minutes ... dropping sugar and you didn't want to deal with him for 5 seconds to give him a damn juice box??? REALLY?
The reason she eventually called me was because the teacher saw my text message I sent to her 15 minutes prior to the phone call.
I realize I am a protective parent. I realize we are spoiled with Heather (again). I realize I don't have the most patience in the world. I realize Trey is my baby. But what I don't understand is why in the hell this woman even agrees to substitute. You have to give insulin MAYBE three times a day to a child via a pump. THAT'S IT. He does the rest on his own!!! I have carb counts written down on everything that is in his snack bin and in his "Low Sugar Treatment" bin. I have a note in his lunch box EVERY DAY with the amount of foods and the carb counts on it. I can't make it any easier!! Yet she's so inconvenienced by him telling her he's low in the middle of a lecture by the Guidance Counselor to give him a juice box???? Furious.
So today, 9:08 I get a text message from the teacher at school that says, "Trey feels low. 80 finger poke. Can he have a snack now or does he have to wait until 9:15? No nurse here yet." I tell her he can have 10-12 carbs now. Then wrote back "Thanks. Nurse here now." followed with the eye-roll emoji face. That's all I needed to know that the teacher wasn't impressed with this old hag either. I sent it to Jordan who went to the school and talked to the teacher about what she's seen this week and what happened yesterday to be sure Trey wasn't just telling us a lie. Nope ... Trey was right. The teacher said she's not impressed with how this lady does it either and that she's not very friendly. She says Trey is very independent in his care and she can tell how nervous he is with the old hag. Yesterday once he asked the teacher to help him and to not tell the nurse. She said she was surprised he went to the old hag yesterday afternoon when he was low because he tries to avoid her but he did what he has been told to do and she knew if he was willing to deal with her - he truly didn't feel well.
Got an alert of a 64 sugar after his lunch today. She called me, "Trey came in from recess and told his teacher he didn't feel good but he didn't come and tell me. She called me and he's having a juice box now that she gave him but what else do you want me to do." I said to feed him whatever he picks up to 20 carbs. She says, "oookkk then." and hangs up. Ya know - I don't blame Trey at all. Just talking to her for 34 seconds on the phone is enough to tell me what she's like in person.
We will be visiting with the Nurse Supervisor on Monday and inform her that this old hag will not be taking care of Trey again. She has two months until official retirement but if she can't do her god damn job then I sure as hell won't make her. It's MY job to be sure my kid is safe and taken care of, so I'll keep doing MY job.
Saturday, February 3, 2018
"That Parent"
I had to be 'That Parent' today, and I'm not even sorry about it.
Trey's Termite Hockey career ended today and he will move up to the next level of Mites next year. The team had a pizza party for the boys after the game today and I made sure my little "sugar baby" was taken care of. Jordan talked to the coordinator about what kind of pizza the kids were getting and said he was going to buy Trey a thin crusted one. The coordinator insisted she would order him one and apologized for not thinking about Trey's needs. We don't expect people to think of Trey's needs ... why would they?? It's Jordan and I's job to think of our son's needs and take care of things accordingly. Eventually it will be Trey who will need to speak up and make the choices.
When the pizza's arrived, the coordinator asked me to follow her and grab our pizza. She handed me a box, I said 'thank you' and a fellow hockey mom (and a lady I've known for 30 years) looked at me strange. I said, "It's Trey's." and she said, "Oh, does he have allergies or something too?" and I said, "Nope, but it's half the carbs." and I walked away. Didn't need to get into the whole deal right at that time, but I hope sometime she asks details. I'm happy to quickly explain.
I was "that parent". I am "that parent" for the sake of my son and I'm not sorry, embarrassed or ashamed. As a parent, we look out for our children and do what is best for them, right? That's exactly what I did. We didn't raise a stink about pizza, Jordan was going to buy the pizza and no one would even know about it --- and in fact, hardly anyone else noticed.
The same mom that made comments to me brought chocolate chip cookies and juice boxes. I took three 12 packs of PowerAde Zero.
When all was said and done, both Jordan and I thanked the coordinator and a coach for understanding and they both said that it wasn't a big deal and they felt bad they didn't know or think of Trey.
It's such a fine line between your kid being normal and yet your kid being different. Yes, he could have had regular pizza at 31 carbs per slice, a juice box for 15 carbs, a chocolate chip cookie for 15 carbs and 15 chips for 16 carbs .... and we could've given him a massive load of insulin to cover it and then chased highs the rest of the day. It's true. We opted on a pizza that was 16 carbs per slice, a powerade zero for 0 carbs, and the cookie and chips as mentioned above. He still got 5 units of insulin. (and is running at 150 blood sugar right now - 2 hours after eating) Normal, but different. Healthier too, quite honestly!
As we continue with this hockey deal - and any other sport - it's going to continue to happen ... regular pizza, regular pasta, regular gatorade, etc. Eventually I believe parents/coaches will remember and either just know from previous times or ask Jordan and I. No, I don't want to raise a stink and he is only ONE child on a team of 20+ ... but he deserves to have the things he needs just like any other child. Thin crust vs regular crust ... really DOES make a difference. Regular PowerAde vs PowerAde Zero really DOES make a difference.
I always go to this ... "If a child on the team has a peanut allergy, we would all be fully aware of it and be sure the child is protected. Why isn't diabetes the same? Because if my kid drinks two juice boxes, eats three cookies and has 2 slices of regular crusted pizza - his blood sugar could quite possibly be so high he ends up in DKA and dead. Diabetes kills too."
Forever "That Parent" and damn f'n proud to be!
Trey's Termite Hockey career ended today and he will move up to the next level of Mites next year. The team had a pizza party for the boys after the game today and I made sure my little "sugar baby" was taken care of. Jordan talked to the coordinator about what kind of pizza the kids were getting and said he was going to buy Trey a thin crusted one. The coordinator insisted she would order him one and apologized for not thinking about Trey's needs. We don't expect people to think of Trey's needs ... why would they?? It's Jordan and I's job to think of our son's needs and take care of things accordingly. Eventually it will be Trey who will need to speak up and make the choices.
When the pizza's arrived, the coordinator asked me to follow her and grab our pizza. She handed me a box, I said 'thank you' and a fellow hockey mom (and a lady I've known for 30 years) looked at me strange. I said, "It's Trey's." and she said, "Oh, does he have allergies or something too?" and I said, "Nope, but it's half the carbs." and I walked away. Didn't need to get into the whole deal right at that time, but I hope sometime she asks details. I'm happy to quickly explain.
I was "that parent". I am "that parent" for the sake of my son and I'm not sorry, embarrassed or ashamed. As a parent, we look out for our children and do what is best for them, right? That's exactly what I did. We didn't raise a stink about pizza, Jordan was going to buy the pizza and no one would even know about it --- and in fact, hardly anyone else noticed.
The same mom that made comments to me brought chocolate chip cookies and juice boxes. I took three 12 packs of PowerAde Zero.
When all was said and done, both Jordan and I thanked the coordinator and a coach for understanding and they both said that it wasn't a big deal and they felt bad they didn't know or think of Trey.
It's such a fine line between your kid being normal and yet your kid being different. Yes, he could have had regular pizza at 31 carbs per slice, a juice box for 15 carbs, a chocolate chip cookie for 15 carbs and 15 chips for 16 carbs .... and we could've given him a massive load of insulin to cover it and then chased highs the rest of the day. It's true. We opted on a pizza that was 16 carbs per slice, a powerade zero for 0 carbs, and the cookie and chips as mentioned above. He still got 5 units of insulin. (and is running at 150 blood sugar right now - 2 hours after eating) Normal, but different. Healthier too, quite honestly!
As we continue with this hockey deal - and any other sport - it's going to continue to happen ... regular pizza, regular pasta, regular gatorade, etc. Eventually I believe parents/coaches will remember and either just know from previous times or ask Jordan and I. No, I don't want to raise a stink and he is only ONE child on a team of 20+ ... but he deserves to have the things he needs just like any other child. Thin crust vs regular crust ... really DOES make a difference. Regular PowerAde vs PowerAde Zero really DOES make a difference.
I always go to this ... "If a child on the team has a peanut allergy, we would all be fully aware of it and be sure the child is protected. Why isn't diabetes the same? Because if my kid drinks two juice boxes, eats three cookies and has 2 slices of regular crusted pizza - his blood sugar could quite possibly be so high he ends up in DKA and dead. Diabetes kills too."
Forever "That Parent" and damn f'n proud to be!
Tuesday, January 9, 2018
2018 already!?
I knew it had been awhile since I posted, but October???? Wow! Shame on me! Goodbye to 2017 and hello 2018 I guess.
December really isn't our month it seems. While we did have a fantastic Endo appointment with a 6.9% A1C and a negative test for celiac disease, we lost my step-grandmother on the 27th. Besides myself, I'm pretty sure Grandma Fern was Trey's biggest fan. She was over 80 years old, but loved playing hockey in the hallways of the nursing home with him. She even got her very own stick last year for Christmas. She bragged to every nurse, cook, dietician, maintenance man, stranger that she saw, about her little hockey star Great Grandkid. She had a shadow box made with his photo and the words "Hockey Star #44" on it and that is where she hung up her stick and kept her puck he gave her. She will be missed, but now she gets to watch him play for the rest of his career.
2018 is starting out sort of rocky. Trey has been running higher than normal so we've done some adjustments to his insulin ratios and basal rates. It's a never ending deal, but I'm thankful that I have the confidence and the knowledge to make these adjustments for him. Right now he is averaging 166 and of course I hope to get that back down to the 150's before our appointment in March. January 4th was the first day back at school after Christmas break and Trey was complaining of a tummy ache. I shrugged it off as him not wanting to be at school but at noon, both the nurse and teacher said he wasn't faking it so he came home. Blood sugar was in the 170's but I checked his ketones anyway and it came back as him having a large amount. Naturally I felt bad for not believing him something was wrong. He didn't fail to rub it in my face "I TOLD YOU MY TUMMY HURT!" Mom fail! I used some Doterra oils on him, cranked up his insulin and by the next morning he was good as new. Not sure was was brewing but it didn't hit full force, thankfully.
We got word last week that 'our' Trey Bagwell was traded to the Amarillo Bulls NAHL hockey team. Tough pill to swallow for sure. There have been some tears shed (admittedly mostly by me) but we have to trust that his job here in Aberdeen was done and someone in Amarillo needed him more than we did now. Without getting too sappy, I'm forever grateful for him and his family, and he will live in our hearts forever. Trey hasn't really said much about it, but we did add him to Snapchat so Trey has been sending Bags some snaps and when he read the one that said, "I miss you guys" Trey made a sad face. I don't think it will fully sink in until this weekend when we are at the Odde and there isn't Bagwell anywhere to be found. I can tell you we will be keeping close tabs on the Bulls now! Best of luck, Bags.
Trey was featured in the Aberdeen Newspaper in December for his T1D. Well, it was more because of his social media accounts, but whatever. It's 'out there' about his T1D and I hope it inspired another little T1D to not let the disease stop him/her. God's using Trey and our family and I will do what I can to help raise awareness. Some people call it "attention seeking" and that's fine ~ those people don't matter to me ~ I call it advocating.
As I close, I want to ask you for some extra prayers for our racing buddy, Frank Heckenast Jr. At the end of last year he hit the wall hard with his race car, casing some damage to his neck. He received word yesterday that he is not cleared to race yet and if he takes another hit like that, it would do permanent damage. He's really bummed as the racing season starts up soon, so healing prayers for him are appreciated. He and his crew are like family to us.
Here's to 2018 .... Happy New Year!
December really isn't our month it seems. While we did have a fantastic Endo appointment with a 6.9% A1C and a negative test for celiac disease, we lost my step-grandmother on the 27th. Besides myself, I'm pretty sure Grandma Fern was Trey's biggest fan. She was over 80 years old, but loved playing hockey in the hallways of the nursing home with him. She even got her very own stick last year for Christmas. She bragged to every nurse, cook, dietician, maintenance man, stranger that she saw, about her little hockey star Great Grandkid. She had a shadow box made with his photo and the words "Hockey Star #44" on it and that is where she hung up her stick and kept her puck he gave her. She will be missed, but now she gets to watch him play for the rest of his career.
2018 is starting out sort of rocky. Trey has been running higher than normal so we've done some adjustments to his insulin ratios and basal rates. It's a never ending deal, but I'm thankful that I have the confidence and the knowledge to make these adjustments for him. Right now he is averaging 166 and of course I hope to get that back down to the 150's before our appointment in March. January 4th was the first day back at school after Christmas break and Trey was complaining of a tummy ache. I shrugged it off as him not wanting to be at school but at noon, both the nurse and teacher said he wasn't faking it so he came home. Blood sugar was in the 170's but I checked his ketones anyway and it came back as him having a large amount. Naturally I felt bad for not believing him something was wrong. He didn't fail to rub it in my face "I TOLD YOU MY TUMMY HURT!" Mom fail! I used some Doterra oils on him, cranked up his insulin and by the next morning he was good as new. Not sure was was brewing but it didn't hit full force, thankfully.
We got word last week that 'our' Trey Bagwell was traded to the Amarillo Bulls NAHL hockey team. Tough pill to swallow for sure. There have been some tears shed (admittedly mostly by me) but we have to trust that his job here in Aberdeen was done and someone in Amarillo needed him more than we did now. Without getting too sappy, I'm forever grateful for him and his family, and he will live in our hearts forever. Trey hasn't really said much about it, but we did add him to Snapchat so Trey has been sending Bags some snaps and when he read the one that said, "I miss you guys" Trey made a sad face. I don't think it will fully sink in until this weekend when we are at the Odde and there isn't Bagwell anywhere to be found. I can tell you we will be keeping close tabs on the Bulls now! Best of luck, Bags.
Trey was featured in the Aberdeen Newspaper in December for his T1D. Well, it was more because of his social media accounts, but whatever. It's 'out there' about his T1D and I hope it inspired another little T1D to not let the disease stop him/her. God's using Trey and our family and I will do what I can to help raise awareness. Some people call it "attention seeking" and that's fine ~ those people don't matter to me ~ I call it advocating.
As I close, I want to ask you for some extra prayers for our racing buddy, Frank Heckenast Jr. At the end of last year he hit the wall hard with his race car, casing some damage to his neck. He received word yesterday that he is not cleared to race yet and if he takes another hit like that, it would do permanent damage. He's really bummed as the racing season starts up soon, so healing prayers for him are appreciated. He and his crew are like family to us.
Here's to 2018 .... Happy New Year!
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