Ketones ... something diabetics deal with often but something we have been lucky to stay away from for the most part.
What are ketones and what causes them?
Ketones are the result of the body burning fat for energy or fuel. For a person with diabetes, ketones are often the result of prolonged high blood sugar and insulin deficiency. Without the right amount of insulin, glucose starts to build up in the blood stream and doesn't enter the cells. The cells burn fat instead of glucose, and ketones form in the blood and spill into the urine.
High levels of ketones can poison the body. When levels get too high, you can develop DKA. DKA may happen to anyone with diabetes, though it is rare in people with type 2.
We have had 'trace' amounts of ketones before which is very manageable and we push the fluids and go potty often and they go away. But this time we had LARGE ketones and mom got a little, ok, a lot nervous.
Trey hasn't been himself for about two-three weeks. He has had a cold, complained of a sore throat, hasn't been eating much, and complaining of a tummy ache often. I thought he was being a stubborn 5 year old boy, trying to delay bedtime or trying to get out of eating something I made in order to have something 'bad' for him. His sugars seemed to be normal, but we finally ran him to the doctor to see what was causing it all after he threw up Wednesday night. Thursday he ran a temp off and on and just wasn't our fun loving Trey and didn't even want to play with Grandpa Dan.
Friday we had the funeral for Pop and he was very sad about it. Again, he didn't want to eat much lunch but I did let him have a bar that had a brownie, carmel sauce and crushed M&M's on it. We arrived at the burial 60 miles away and he told me he was going to be sick ... he indeed was. I chalked it up to the brownie which was probably 30 carbs and just too much on his little tummy. A half hour passes and he's 'starving' so I give him some goldfish from my purse. He soon says his tummy hurts. He vomited again and I knew we had to get him home. On the road home, his sugar started dropping so we picked up some apple juice and I had him take sips of it to keep his blood sugar from dropping lower but not too much that it would upset his tummy.
Upon arriving home, I had decided he was probably just backed up and needed some Miralax to help move things along and ease the tummy pains as we've had this issue with him before. One more time of being sick and I said we better check ketones and that's when I saw the brightest color on the stick and I couldn't believe it. His sugar was only 84 -- ketones are usually present with high sugars, not low. I called Jordan, who was at his grandma's house and asked him to come home immediately as we probably were headed to the Emergency Room. I then phoned his doctor in Sioux Falls and left a message for the office staff to page him. By this time, Trey had napped a little and was starving. I gave him two saltines and 1/4 cup of chicken noodle soup which was recommended on our paperwork from the hospital upon his diagnoses and pushed the powerade zero. He was still hungry but we managed to wait to feed him more until we knew his tummy could handle it and a call from Dr Gupta. I knew he needed more insulin to clear the ketones, but with a low sugar already, I didn't know what to do!
We were instructed to get his sugar up, quickly, to 250. Once we hit 250, give him 1.5 units of insulin and check ketones. If he threw up again, we had to get to the ER for an IV of fluids and the staff there would be in touch with Dr Gupta for further treatment options.
His tummy handled it all well and it seemed like forever to get to 250. (We gave him apple juice to get him up). Then my Trey seems more like himself already and says "I'm so hungry!" so he had some chicken nuggets daddy cooked for him. Ketones were coming down, but still in the large category. I was scared to go to bed, but by now, my tummy had rumblings too and I knew I couldn't be sick if I had a sick kid I had to take care of.
He slept great - me, not so much. He woke up with blood sugar of 200 and Small ketones. He still needed more insulin so he had applesauce and 4oz apple juice for breakfast and then 1.5 units of insulin again. I also pushed the fluids and encouraged him to potty as much he could.
He was determined to play in his hockey game at 8:45am today. I told him if he had ketones, he could not play as it would only increase the ketones and brew yet more illness. I told him what we could do for the next 45 minutes and he was determined to play in his game. This is when he picked his own high carb breakfast and filled his water bottle and peed four times. The last time, at 8:15 showed between none and trace amount of ketones and even though he said his tummy still kinda hurt, he was playing hockey.
In today's game, he scored four goals. I cried after the first one. I was so proud of him for finally scoring a goal because he's been trying so hard. I smiled, banged on the glass and had tears for the next three as well. Technically, my boy had a Hat-Trick today - his first ever!
As I watched him play the rest of the game, I couldn't help but to think of so many things. 1) Papa got to see his first hockey game and I'm certain Papa helped with those goals and 2) I was so proud of him for playing his best game to date, but I'm more proud of his determination to PLAY the game and not let diabetes stop him. Five years old, did whatever he had to do to get rid of the ketones and go out there to have the best game of his life thus far ... take that diabetes. We BEAT you today!
Chalk up another FIRST for us on this journey we are on ... and thankfully everyone's prayers helped and we were able to avoid a ER visit and avoid DKA! God Is Good.
Saturday, December 31, 2016
Wednesday, December 28, 2016
Merry Christmas & Happy New Year
What a couple of weeks it's been. All the holiday parties at school, two birthday parties and Christmas ... it's been hard to keep blood sugars in range, but we did the best we could.
Due to the weather, we changed Christmas up a bit this year. We celebrated with the Westby's on Christmas Eve at the nursing home where Great Grandma Fern got her own hockey stick and Trey taught cousin Alex about hockey. Jordan received a call that afternoon that his grandpa (Papa) had passed away from cancer. Christmas Eve night we headed out to Aunt Jeff and Paula's for a Casanova gathering. Trey ate four bites of food and then played with his cousins. He made Uncle Jeff, who also has T1D, administer the insulin via his pump. Christmas morning the four of us opened gifts and then headed to my mom's in Groton for a quick Christmas lunch and celebration. Instead of heading south to Conde for the Thomas Christmas, we came back to Aberdeen and went over to Nan's house.
Trey didn't eat much at all for these two days. Even surrounded by sweets and candies, he did really well keeping sugars in check. We did splurge and have 2 peanut butter balls that spiked him to over 250 in a hurry but he did come down from it nicely.
We hit the Pizza Ranch on Monday in memory of Papa (his favorite place to eat ... My dad's also!). Plugged in 100 carbs for Trey. I almost cried. He had breadsticks and pizza and dessert pizza. I was so proud of him I when I told him "100 carbs buddy" and he said, "Are you going to dual wave me?" I smiled so huge and said, "yep ... I think that's a good idea." Grandma Karla and Grandpa Dan were lost when he asked. I love that Trey is understanding all the 'tricks' and knows when it should be used. I try to educate him the best I can, knowing sometimes the information I tell him won't stick, but he amazes me when he tosses it back to me. He got a lot of insulin for that meal, but he did come down thanks to dual wave.
My hope for 2017 is that I update this more. I don't know who reads it, but it's part therapy for me and part information for the readers on what diabetes does to our family. It's been a long, exhausting, tricky, hard, sad year for us, and to think that March will mark the 1 year anniversary of his diaganoses seems impossible. I look back and how far we have all come in our knowledge and how proud of Trey I am for everything he has been through and I smile. I thank God for the people diabetes has brought into our life, I thank God for the technology we have, I thank God for Trey's overall health and awareness to the disease. We are lucky, to be honest. Here is hoping 2017 furthers our education/knowledge, Trey continues to grow and educate others, and more life long connections are made and of course, we will keep praying for a cure.
Merry Christmas & Happy New Year!
Due to the weather, we changed Christmas up a bit this year. We celebrated with the Westby's on Christmas Eve at the nursing home where Great Grandma Fern got her own hockey stick and Trey taught cousin Alex about hockey. Jordan received a call that afternoon that his grandpa (Papa) had passed away from cancer. Christmas Eve night we headed out to Aunt Jeff and Paula's for a Casanova gathering. Trey ate four bites of food and then played with his cousins. He made Uncle Jeff, who also has T1D, administer the insulin via his pump. Christmas morning the four of us opened gifts and then headed to my mom's in Groton for a quick Christmas lunch and celebration. Instead of heading south to Conde for the Thomas Christmas, we came back to Aberdeen and went over to Nan's house.
Trey didn't eat much at all for these two days. Even surrounded by sweets and candies, he did really well keeping sugars in check. We did splurge and have 2 peanut butter balls that spiked him to over 250 in a hurry but he did come down from it nicely.
We hit the Pizza Ranch on Monday in memory of Papa (his favorite place to eat ... My dad's also!). Plugged in 100 carbs for Trey. I almost cried. He had breadsticks and pizza and dessert pizza. I was so proud of him I when I told him "100 carbs buddy" and he said, "Are you going to dual wave me?" I smiled so huge and said, "yep ... I think that's a good idea." Grandma Karla and Grandpa Dan were lost when he asked. I love that Trey is understanding all the 'tricks' and knows when it should be used. I try to educate him the best I can, knowing sometimes the information I tell him won't stick, but he amazes me when he tosses it back to me. He got a lot of insulin for that meal, but he did come down thanks to dual wave.
My hope for 2017 is that I update this more. I don't know who reads it, but it's part therapy for me and part information for the readers on what diabetes does to our family. It's been a long, exhausting, tricky, hard, sad year for us, and to think that March will mark the 1 year anniversary of his diaganoses seems impossible. I look back and how far we have all come in our knowledge and how proud of Trey I am for everything he has been through and I smile. I thank God for the people diabetes has brought into our life, I thank God for the technology we have, I thank God for Trey's overall health and awareness to the disease. We are lucky, to be honest. Here is hoping 2017 furthers our education/knowledge, Trey continues to grow and educate others, and more life long connections are made and of course, we will keep praying for a cure.
Merry Christmas & Happy New Year!
Rant
I was recently talking with my best friend about all the stress of the holiday season. We also discussed both having a year of "firsts". She's having a year of firsts without her father, who passed away in February. My firsts are diabetic related.
Diabetes has become my life. It is something that is on my mind always. I either take a look at how many carbohydrates are in food; look at the CGM app on my phone to see what Trey's sugars are; plan out what different food choices I can make depending on what Trey's sugar is; how many carb snack he can have for how high or low he is running; knowing where his kit is; looking at the calendar to see what days we change out his sites; etc. It's hourly ... Sometimes many times an hour. It's in the middle of the night, when I roll over and grab my phone to check his Dexcom. It's always ... Always on my mind. I don't expect anyone who is a non D parent to understand, and I'm not searching for sympathy, I'm simply saying this disease is a jackass.
A very good friend of mine recently sent me a photograph she found of a little boy, sitting naked (backwards) on a rock staring out into the ocean off of Hawaii. He had a Dexcom CGM on his arm. I smiled, then my heart broke a little bit. I know that mother's agony. I replied to my friend, thanking her for sending it to me and then started ranting ... I hate diabetes. I love the technology that diabetics have now, but I pray for a cure. I hate that insurance companies don't think they need to cover things such as a pump or a CGM. I hate that the cost of insulin has skyrocketed to an astronomical amount that some families cannot afford. The damn world is so un-fucking-educated about diabetes and it pisses me off. Sorry for such language ... But it's so true.
Today I read the obits in the local newspaper and I see a person in their low 30's who passed. Intrigued I read the entire obit, even though I did not know the person. Then I see ... "Diaganosed at age 16 with diabetes" and I felt like I was going to puke. It does not say that the young man passed from his diabetes, but it still makes my heart hurt.
Today Trey came home from school with sugars in the 90's and an arrow down on the CGM. He has a sugar free Popsicle. He continues to decline, now in the 70's, so a 'real' Popsicle is had. Current sugar 1 hour after the Popsicle is 182 with an arrow up. The first Popsicle had 0 carbs. The second Popsicle had 8 carbs - 5 of which were sugar. Over 100 "points" up in an hour from 8 carbs. Maddening. I hate diabetes.
I hate waking my child up at 4am to do a finger poke and force him to drink some Fairlife chocolate milk. I hate seeing his sugar go over 300 when he's at school because his morning was too packed full of exercise and it didn't agree with him. I hate having to tell him "no, you can't have the bun" when he wants a hotdog at the Wings game. I hate that he is too embarrassed at school lunch to have his nurse administer his insulin in the gym, that he wants to make it a private affair where the other kids can't see because he doesn't want to answer questions. I hate feeling like my husband and I cannot go out for a simple supper date without our children because there is no one that really knows how to take care of Trey's needs. I don't even want to ask someone to watch him, because truthfully it's a lot for a person to understand even though Trey basically knows the in's and outs of the disease and pump himself. He has great self control. As I said before, I hate that insurance companies don't want to cover the CGM as they don't find it medically necessary to manage the disease. Thank God our insurance did cover it, but it's so very wrong for them to think it's not a NEED.
End of Rant
Diabetes has become my life. It is something that is on my mind always. I either take a look at how many carbohydrates are in food; look at the CGM app on my phone to see what Trey's sugars are; plan out what different food choices I can make depending on what Trey's sugar is; how many carb snack he can have for how high or low he is running; knowing where his kit is; looking at the calendar to see what days we change out his sites; etc. It's hourly ... Sometimes many times an hour. It's in the middle of the night, when I roll over and grab my phone to check his Dexcom. It's always ... Always on my mind. I don't expect anyone who is a non D parent to understand, and I'm not searching for sympathy, I'm simply saying this disease is a jackass.
A very good friend of mine recently sent me a photograph she found of a little boy, sitting naked (backwards) on a rock staring out into the ocean off of Hawaii. He had a Dexcom CGM on his arm. I smiled, then my heart broke a little bit. I know that mother's agony. I replied to my friend, thanking her for sending it to me and then started ranting ... I hate diabetes. I love the technology that diabetics have now, but I pray for a cure. I hate that insurance companies don't think they need to cover things such as a pump or a CGM. I hate that the cost of insulin has skyrocketed to an astronomical amount that some families cannot afford. The damn world is so un-fucking-educated about diabetes and it pisses me off. Sorry for such language ... But it's so true.
Today I read the obits in the local newspaper and I see a person in their low 30's who passed. Intrigued I read the entire obit, even though I did not know the person. Then I see ... "Diaganosed at age 16 with diabetes" and I felt like I was going to puke. It does not say that the young man passed from his diabetes, but it still makes my heart hurt.
Today Trey came home from school with sugars in the 90's and an arrow down on the CGM. He has a sugar free Popsicle. He continues to decline, now in the 70's, so a 'real' Popsicle is had. Current sugar 1 hour after the Popsicle is 182 with an arrow up. The first Popsicle had 0 carbs. The second Popsicle had 8 carbs - 5 of which were sugar. Over 100 "points" up in an hour from 8 carbs. Maddening. I hate diabetes.
I hate waking my child up at 4am to do a finger poke and force him to drink some Fairlife chocolate milk. I hate seeing his sugar go over 300 when he's at school because his morning was too packed full of exercise and it didn't agree with him. I hate having to tell him "no, you can't have the bun" when he wants a hotdog at the Wings game. I hate that he is too embarrassed at school lunch to have his nurse administer his insulin in the gym, that he wants to make it a private affair where the other kids can't see because he doesn't want to answer questions. I hate feeling like my husband and I cannot go out for a simple supper date without our children because there is no one that really knows how to take care of Trey's needs. I don't even want to ask someone to watch him, because truthfully it's a lot for a person to understand even though Trey basically knows the in's and outs of the disease and pump himself. He has great self control. As I said before, I hate that insurance companies don't want to cover the CGM as they don't find it medically necessary to manage the disease. Thank God our insurance did cover it, but it's so very wrong for them to think it's not a NEED.
End of Rant
Thursday, December 8, 2016
Illness .. Cookies .. Birthdays
We made it through the first Thanksgiving with Type 1. Since Trey isn't big on potatoes, it was the buns I had to watch. He did get one bun and then ran high the rest of the day. One stinking bun ... It's crazy how much that can affect someone.
We haven't had another hockey game that we have made it to. We had Thanskgiving weekend off and last weekend we were doing our annual cookie baking at Grandma Lori's. This weekend we are back in action and I can't wait to see him do what he loves most!
Speaking of cookie baking, surprisingly Trey's numbers were pretty good. He ate some cookies and licked some frosting and I didn't even have to give extra insulin to cover it. He didn't beg for more or get upset if I said 'no'. His self control - at age 5 - is something I admire greatly.
Trey did have some higher blood sugars last week. Ended up coming down with a heck of a cold. Even the slightest bit of food would send his sugars over 300, driving me crazy! Extra fluids and extra insulin and he's back to having better numbers. It's probably time to get in touch with Teresa in Sioux Falls again and have her adjust a few more numbers as our mornings are still higher than we'd like them to be. It's normal to have higher sugar in the morning, but waking up in high 100's low 200's isn't where we want to be.
I wasn't aware of this until the school nurse brough it to my attention today, but Trey wouldn't allow her to administer his insulin in the gym after lunch. He would make her go back to the classroom so no one could see. This would cause him to miss some recess time and he would get frustrated by that. Today she told me they eat lunch with their boots and snow pants on and he allowed her to do his pump in the gym as long as she blocked other kids from seeing it and he was able to go outside with his class and get FULL recess in. When he had the shots, I know sometimes he woudln't like others to see and I assumed with the pump he was better about it. I mean, we hook it and unhook it in the locker room at hockey three times a week and he doesn't say anything. Guess it's a discussion I need to have with him. I don't want him to be ashamed and I know he's trying to avoid questions being asked. I want him to be comfortable of course, but I need to him know it's OK if people see it and Mrs Osborn will handle the questions if there are any.
We have another first coming up. Trey has been invited to a birthday party this Sunday. The parents know of Trey's diabetes, but they do not know specifics. Jordan or I will attend the party with Trey so we can administer the insulin and watch his CGM. The "firsts" are always the hardest. I know he will have a blast and I'm happy the parents still invited him and didn't exclude him just because of T1.
Christmas is coming up ... Fast. If you're reading this due to the letter I sent out with the blog listed at the bottom -- welcome. You can put your email address in over to the right and when I do update the blog it will send an email to you so you don't have to look up the site often.
We haven't had another hockey game that we have made it to. We had Thanskgiving weekend off and last weekend we were doing our annual cookie baking at Grandma Lori's. This weekend we are back in action and I can't wait to see him do what he loves most!
Speaking of cookie baking, surprisingly Trey's numbers were pretty good. He ate some cookies and licked some frosting and I didn't even have to give extra insulin to cover it. He didn't beg for more or get upset if I said 'no'. His self control - at age 5 - is something I admire greatly.
Trey did have some higher blood sugars last week. Ended up coming down with a heck of a cold. Even the slightest bit of food would send his sugars over 300, driving me crazy! Extra fluids and extra insulin and he's back to having better numbers. It's probably time to get in touch with Teresa in Sioux Falls again and have her adjust a few more numbers as our mornings are still higher than we'd like them to be. It's normal to have higher sugar in the morning, but waking up in high 100's low 200's isn't where we want to be.
I wasn't aware of this until the school nurse brough it to my attention today, but Trey wouldn't allow her to administer his insulin in the gym after lunch. He would make her go back to the classroom so no one could see. This would cause him to miss some recess time and he would get frustrated by that. Today she told me they eat lunch with their boots and snow pants on and he allowed her to do his pump in the gym as long as she blocked other kids from seeing it and he was able to go outside with his class and get FULL recess in. When he had the shots, I know sometimes he woudln't like others to see and I assumed with the pump he was better about it. I mean, we hook it and unhook it in the locker room at hockey three times a week and he doesn't say anything. Guess it's a discussion I need to have with him. I don't want him to be ashamed and I know he's trying to avoid questions being asked. I want him to be comfortable of course, but I need to him know it's OK if people see it and Mrs Osborn will handle the questions if there are any.
We have another first coming up. Trey has been invited to a birthday party this Sunday. The parents know of Trey's diabetes, but they do not know specifics. Jordan or I will attend the party with Trey so we can administer the insulin and watch his CGM. The "firsts" are always the hardest. I know he will have a blast and I'm happy the parents still invited him and didn't exclude him just because of T1.
Christmas is coming up ... Fast. If you're reading this due to the letter I sent out with the blog listed at the bottom -- welcome. You can put your email address in over to the right and when I do update the blog it will send an email to you so you don't have to look up the site often.
Tuesday, November 22, 2016
The Bagwell's
Twenty-one days ago I posted about a kid named Trey Bagwell. (Go back and read it if you haven't yet or you're going to be lost on this post). We got to meet Trey!
Friday was Skate with the Wings after the game. Treyster took his skates and skated directly to Trey after the game as I followed behind. He shook Jordan and I's hands (I don't know why this impresses me so much but it truly does. Every Wings player that extends his hand first ... Just says what kind of person they are I think.) and bent down to say hi to Treyster. Trey immediately pulled up his hoodie and showed Trey his CGM and pump. Trey says "That's awesome!!!" Up walks a gentleman and Trey says, "Dad, this is the diabetic family I was telling you about," And we shook hands with Bob Bagwell, Trey's dad. Trey asked about Treyster's pump, his bolus and basal rates. Bob asked about his A1C and if we had glucagon with us. Bob gave me his phone number and visited with us for about 15 minutes as Trey went to visit with other people. Bob told us Trey was the only child in his school with diabetes; asked if Treyster had a school nurse; asked about hockey. He told me numerous times to call him or Betty, his wife, anytime. Trey didn't like the pump as it wouldn't stay on with all his sweat from hockey practice and games so he does MDI. He said he ran high during the game and had to give himself insulin in the locker room. I asked if his billet family (The host family Trey lives with while playing for Wings) was good about everything and Bob said they don't know much about it but they are aware of it. Bob told Jordan he would be at Treyster's Termite game the following morning.
I couldn't sleep Friday night. Trey Bagwell and his father were so kind and caring. They talked the language that no one other than a diabetic understands. People who were strangers quickly became a support for one another. Hockey. I've said it before, Hockey has brought so many blessings into our lives and this is just one more to add to the list.
I sent Trey a message thanking him for taking the time to visit with Treyster and us. He said he was honored to meet us and is happy to do anything to support Treyster. What a great kid. 18 years old, diaganosed at age 13, never letting it get in his way.
Bob did in fact show up to Treyster's first Termite game on that Saturday as well. First thing he asked me when the game was over is "What is Trey's sugar?" I respond with "194". He asked, "What was he when he went on the ice" I said "134". Bob smiled and said, "He's doing fine then!"
C'mon people ... Termite hockey. It's cute, it's funny, but it's not something I would go watch if I didn't have a kid playing. There as Bob, the entire hour. Meant the world to me.
Trey started Saturdays' game for the Wings but took a brutal hit and left the game early. I became mother hen and grew very worried about him as he didn't come back onto the ice. I assumed a concussion. I checked with him after the game to be sure he was ok and he said he was. I feel like he's my boy!! I feel like even though he has a mother and a billet mom, I need to check on him! Bob sent me a message on Sunday thanking us for our time, said we seem to have Treyster's diabetes locked in and are doing a great job. He then sent me a picture of Trey from after Saturday's game and said, "Looks like Trey broke his nose last night." Poor babe. Bob also sent me Betty's phone number asking me to call her anytime I have any questions.
The Bagwell family will become one of our favorite families I'm sure. The Heller's have been great to us, the Hein's keep in touch as well. This time it's different ~ this time we have something in common other than my kid favoring their kid.
I told you something positive would come out of Treyster having T1D ... Keep watching for it. It's happening.
Friday was Skate with the Wings after the game. Treyster took his skates and skated directly to Trey after the game as I followed behind. He shook Jordan and I's hands (I don't know why this impresses me so much but it truly does. Every Wings player that extends his hand first ... Just says what kind of person they are I think.) and bent down to say hi to Treyster. Trey immediately pulled up his hoodie and showed Trey his CGM and pump. Trey says "That's awesome!!!" Up walks a gentleman and Trey says, "Dad, this is the diabetic family I was telling you about," And we shook hands with Bob Bagwell, Trey's dad. Trey asked about Treyster's pump, his bolus and basal rates. Bob asked about his A1C and if we had glucagon with us. Bob gave me his phone number and visited with us for about 15 minutes as Trey went to visit with other people. Bob told us Trey was the only child in his school with diabetes; asked if Treyster had a school nurse; asked about hockey. He told me numerous times to call him or Betty, his wife, anytime. Trey didn't like the pump as it wouldn't stay on with all his sweat from hockey practice and games so he does MDI. He said he ran high during the game and had to give himself insulin in the locker room. I asked if his billet family (The host family Trey lives with while playing for Wings) was good about everything and Bob said they don't know much about it but they are aware of it. Bob told Jordan he would be at Treyster's Termite game the following morning.
I couldn't sleep Friday night. Trey Bagwell and his father were so kind and caring. They talked the language that no one other than a diabetic understands. People who were strangers quickly became a support for one another. Hockey. I've said it before, Hockey has brought so many blessings into our lives and this is just one more to add to the list.
I sent Trey a message thanking him for taking the time to visit with Treyster and us. He said he was honored to meet us and is happy to do anything to support Treyster. What a great kid. 18 years old, diaganosed at age 13, never letting it get in his way.
Bob did in fact show up to Treyster's first Termite game on that Saturday as well. First thing he asked me when the game was over is "What is Trey's sugar?" I respond with "194". He asked, "What was he when he went on the ice" I said "134". Bob smiled and said, "He's doing fine then!"
C'mon people ... Termite hockey. It's cute, it's funny, but it's not something I would go watch if I didn't have a kid playing. There as Bob, the entire hour. Meant the world to me.
Trey started Saturdays' game for the Wings but took a brutal hit and left the game early. I became mother hen and grew very worried about him as he didn't come back onto the ice. I assumed a concussion. I checked with him after the game to be sure he was ok and he said he was. I feel like he's my boy!! I feel like even though he has a mother and a billet mom, I need to check on him! Bob sent me a message on Sunday thanking us for our time, said we seem to have Treyster's diabetes locked in and are doing a great job. He then sent me a picture of Trey from after Saturday's game and said, "Looks like Trey broke his nose last night." Poor babe. Bob also sent me Betty's phone number asking me to call her anytime I have any questions.
The Bagwell family will become one of our favorite families I'm sure. The Heller's have been great to us, the Hein's keep in touch as well. This time it's different ~ this time we have something in common other than my kid favoring their kid.
I told you something positive would come out of Treyster having T1D ... Keep watching for it. It's happening.
Monday, November 14, 2016
World Diabetes Day
Today is declared as World Diabetes Day because it is the birthday of Dr Frederick Banting who is the gentleman who discovered insulin back in 1921. Thank GOD for that man and his brains!!
All month long I have been posting diabetes facts and other diabetes related things to raise awareness. I know many people don't bother to read them and frankly, I don't care. It is just my hope that for the ones that DO read them, they continue to educate others and raise awareness.
Today my whole family dressed in blue to help show support. Trey's teacher sent an email to all the parents of the kids in his class asking them to wear blue today to support their friend who has diabetes. Trey took 30 JDRF braclets (we are downt to just THREE of those suckers left! Finally!) to school today for his class, teachers and principal. Truly, this is all we can do! We can TALK about diabetes. We can EDUCATE others. We can FIGHT. We can RAISE awareness. That's what we can do.
So many who have diabetes are silent about it. There is no obvious signs like hair loss or weakness or chemo treatments. Those who have cancer are seldom silent about it. Why do we feel we should be silent about diabetes?
I post about it, talk about it, whip out Trey's kit in public, have his CGM monitor in my hands at the skating rink and I will always be OPEN about it. There is nothing to hide and nothing to be ashamed of. I don't talk about it or post on Facebook about it for sympathy. Yep, it sucks to have a little boy with a deadly disease, but it would suck even more if I didn't talk about it and educate my friends and family about it because these are the people he needs in his life and in his corner to help him fight this disease. These people I need to know the signs and be aware of things so when he is in their care, they know what to do and how to do it. When he's 15 and you see him with his girlfriend at the movies eating a huge container of popcorn, you can remind him to cover it with insulin (yep, he will hate me when he's 15 and I have people looking out for him!)
Why are we silent about diabetes? That is why the world is so uneducated about it. So many confuse Type 1 with Type 2. People associate diabetes with eating too much sugar and that's false in a Type 1 case. You see jokes about it all the time ... A huge pile of candy and someone will say "looks like I'm going to get diabetes". Wrong. Do we joke about cancer when we see a bald person? No. So why is it we do that for diabetes??? Because we are uneducated. That's my job (among many!) as a mother of a type 1 child ... Raise awareness and educate others about the disease that has changed our lives. People who live with diabetes don't talk about it. They shrug like it's not a big deal. Talk about it. Please ... Talk about it!!! I know all three of you that read this know a person with diabetes other than Trey. Type 1 or Type 2. Talk about it. Educate others about it. Raise awareness. We will never get a cure if we remain silent!!
Tuesday, November 8, 2016
Randomness
Random thoughts:
* Trey has been blessed with the best school nurse in the history of school nurses. Seriously - she is so caring and kind and always keeps me in the loop of what his numbers are, what he eats and how much insulin he gets. I love love love love that she's not afraid to ask questions either. I trust her, 100% to make decisions without my input, but I also am glad she runs things by me. They have a very special bond and I'm so grateful for that. She's truly an angel.
* The pump is awesome. We are really liking how much it's lowered Trey's numbers and keeping him in range. Makes me anxious to see what his A1C number is in December now!
* Trey started hockey last night. Had his first practice. Before practice he was 185 and after he was 286. I'm a little frustrated that exercise raises him, but at the same time, I know this may not always be the case. We kept a close eye on his CGM monitor for those 45 minutes and he even would look at me and point to it as he wanted to know his number as well. He will wear his CGM for practice and games but not his pump. However, if he continues to raise during those 45 minutes we may need to discuss options with his medical team.
* November 14th is National Diabetes Day and you're supposed to wear BLUE to show your support. I emailed his teacher telling her of this day and said I would not be offended if she didn't wish to participate. Received the KinderNews weekly letter yesterday and she is asking the students to wear BLUE on Nov 14th to show their support for a fellow T1 friend and classmate. LOVE!
* Trey was at open skate on Sunday night at the ice rink and I noticed a girl and guy skating together. She was probably high school if not college, but I noticed she had an insulin pump on her pants. I smiled, grabbed Trey's attention and pointed it out to her and he smiled and nodded. Something I probably wouldn't have noticed before Trey's diaganoses but now I feel like everyone we see that has diabetes, we have a bond with.
Until next time .... Keep spreading awareness!!!
* Trey has been blessed with the best school nurse in the history of school nurses. Seriously - she is so caring and kind and always keeps me in the loop of what his numbers are, what he eats and how much insulin he gets. I love love love love that she's not afraid to ask questions either. I trust her, 100% to make decisions without my input, but I also am glad she runs things by me. They have a very special bond and I'm so grateful for that. She's truly an angel.
* The pump is awesome. We are really liking how much it's lowered Trey's numbers and keeping him in range. Makes me anxious to see what his A1C number is in December now!
* Trey started hockey last night. Had his first practice. Before practice he was 185 and after he was 286. I'm a little frustrated that exercise raises him, but at the same time, I know this may not always be the case. We kept a close eye on his CGM monitor for those 45 minutes and he even would look at me and point to it as he wanted to know his number as well. He will wear his CGM for practice and games but not his pump. However, if he continues to raise during those 45 minutes we may need to discuss options with his medical team.
* November 14th is National Diabetes Day and you're supposed to wear BLUE to show your support. I emailed his teacher telling her of this day and said I would not be offended if she didn't wish to participate. Received the KinderNews weekly letter yesterday and she is asking the students to wear BLUE on Nov 14th to show their support for a fellow T1 friend and classmate. LOVE!
* Trey was at open skate on Sunday night at the ice rink and I noticed a girl and guy skating together. She was probably high school if not college, but I noticed she had an insulin pump on her pants. I smiled, grabbed Trey's attention and pointed it out to her and he smiled and nodded. Something I probably wouldn't have noticed before Trey's diaganoses but now I feel like everyone we see that has diabetes, we have a bond with.
Until next time .... Keep spreading awareness!!!
Tuesday, November 1, 2016
The Higher Power
First off, November is National Diabetes Awareness month. I will be blowing up my Facebook page full of Diabetes information all month. How many people can I annoy?! I get a little upset when my "friends" hit the unfollow button when I post diabetes stuff, but then I think to myself ... Someday they will thank me. I too was ignorant to what diabetes was all about. I will continue to raise awareness and if I lose friends from it, I consider it as the trash taking itself out. I don't have time to be a people pleaser - I'm too busy keeping my son alive and my kids healthy.
Now, I wanted to share more about what I posted on Facebook about the Wings hockey player. (Here come the tears again) As I've said many times, since Trey was 2 all he's wanted to do is play hockey. You see my posts, you all know the obsession and love that he has. He's had many favorite players over the years. Jordan Heller and Ronnie Hein were the top two dudes. He claimed to be a Tucker fan, but that was only because Tucker lived at daycare. A quiet kid named Ethan Stewart joined the favorite list last year but was traded to the Kenai River Brown Bears (Alaskan Team) a few weeks ago leaving Trey studying who he could root for next. There is a kid, Joey Strada, whom Trey likes "because he is little". (Seriously, what's with him liking these little dudes?? Trevor Pray is his favorite Groton Tiger "because he is little") Joey also played preseason for the Waterloo Blackhawks so that peaked Trey's interest too.
Saturday night we were at the game and saw a new name on the roster - Trey Bagwell. As my Trey was reading over the page looking at the names, he found Trey's (TB we will call him to avoid confusion) name and was excited. We looked for him during warm-ups and Trey claimed "He's my favorite!"
Fast forward to Monday. I am on Twitter reading things and I run across Trey Bagwell's Twitter page and there I see it, his post about being diaganosed with T1D 5 years ago. I gasped, eyes welled up with tears and my heart raced. What are the odds? I took a screen shot and sent it to Jordan and his sister, Jessica. I then wrote a message to TB that said, "My son is 5, also named Trey, loves hockey and was diaganosed in March. We would love to chat with you!" He responded right away and said I could DM (direct message) him and he would be happy to answer any questions I may have. Through my tears, I typed up a message and explained a little about who we are, Trey's passion for the game, his love for "his hockey boys" and that this was a message straight from above. I told TB that my first question after the diaganoses was if he could play hockey. TB wrote me back a very nice message. He hasn't let T1D stop him from playing, it's not always easy, but it becomes second nature. He wears his Dexcom G5 (same as Trey!) during the game and the trainer watches his numbers. He will drink grape juice or eat skittles during the games if he is too low. He said "soon enough he will be my age inspiring young kids as well." And this momma bawled and bawled. He asked if he could meet Trey the next home game (Nov 12th) and talk to him.
I was so excited to tell Trey when he got home from school. His eyes got big and smile appeared while Delanie jumped up and down saying how cool that was! I saw today that TB shoots left, same as Trey and his birthday is March 17th, just three days after our diaganoses. I mean, c'mon, how can this NOT be God's work?? Kid gets sent to Aberdeen a week before my own kid starts hockey and all these similarities ... Seriously. It gives me goosebumps and puts tears in my eyes. I cannot wait for Trey to meet Trey. I have no doubts that this will be yet another life-long friendship.
Today I received a message from Betty, TB's mother, and she offered her support as well. The hockey world is a world like none other. It has brought so many people into our life that we never would've met. Now it gave us TB - a real life hero who fights for his life every day just like my own son and an inspiration for Trey to know that you can do anything you want to do. Diabetes won't stop you!!!!!
Thank you, God - message was received loud and clear and I promise to never, ever forget it.
Friday, October 28, 2016
Low's and High's
Insulin went into the pump on October 21st. We had our last meeting with Jenny in SF and she got us rolling with everything hooked up and working.
I could write 28 pages on the pump, but most of it wouldn't make any sense to you, so I won't waste anyone's time.
He gets insulin 24 hours a day. We have made changes to the amount of insulin twice already this week. For a quick example, every hour he will get .125 units of insulin. Hardly any - but yet some! Remember, we are trying to mimic the human pancreas the best we can. We have since increased his hourly insulin for certain hours of the day to .175. Seems like a tiny amount, and it is, but that's what this is all about ... Tiny adjustments until we get it right. We also changed his lunch carb ratio from 40 to 35 and back to 40 as he has been going low in the afternoon at school.
Low sugar is something we haven't had to deal with much. Trey's always ran high and the scary thing now is, we were comfortable with that. We were ok with 250. Shame!!!! With the pump, our new target is 100-150. In the last 6 months we haven't seen numbers in this range much and when he would get to 150, we gave him food to increase his sugar.
With the pump, we have been having some lows. Not scary, bad lows, but numbers under 100. A couple things here: 1) his mood is sooooo much better when he is under 150 2) mom's mood is sooooo much better when he's under 150 and 3) We are no longer OK with seeing 250 on his CGM readings. I have been trying to catch his lows before we hit 70's so we can provide a snack to bring him up instead of juice. I really hate it when he has juice because he goes from under 100 to 300 in 20 minutes. It's what the CDE's want to happen -- a fast rise, but I personally hate it because it causes such a mood swing that I almost need a Jagbomb to deal with him. Lows will be something we need to keep an eye out for and it's very common with people on the pump.
We were so accustomed to Trey's meltdowns that we started to just figure that's how he's going to be. Well we know now first hand that high blood sugar messes up your emotions. Uncle Jeff has made comments about that before, but until we actually got Trey in the right range with GOOD blood sugars, we didn't really see it. Now we do.
He wears the pump on one hip and the CGM on the other. I ordered him a SPIbelt so he can put them together in this nifty belt but it seems to be causing some problems with the tubing on the pump getting kinked (which leads to insulin not being given correctly). He is able to sleep with the pump on and it doesn't cause him any grief which is nice. He isn't a fan of changing the site every 3 days, but he says it's better than four shots a day in the tummy.
Today they are having a "holiday party" at school and they made a Witch's Brew. I've worked very close with the nurse and teacher to be sure Trey get's to participate in this. We are looking at roughly 25-35 grams of carbs of shit like cereal, chips, and candy. I cringe when I think about it, but I also realize that it's a MUST that he participates. We will be giving insulin to cover this snack-mess. He's a kid first .. Diabetic second. Enjoy your party buddy!!
I could write 28 pages on the pump, but most of it wouldn't make any sense to you, so I won't waste anyone's time.
He gets insulin 24 hours a day. We have made changes to the amount of insulin twice already this week. For a quick example, every hour he will get .125 units of insulin. Hardly any - but yet some! Remember, we are trying to mimic the human pancreas the best we can. We have since increased his hourly insulin for certain hours of the day to .175. Seems like a tiny amount, and it is, but that's what this is all about ... Tiny adjustments until we get it right. We also changed his lunch carb ratio from 40 to 35 and back to 40 as he has been going low in the afternoon at school.
Low sugar is something we haven't had to deal with much. Trey's always ran high and the scary thing now is, we were comfortable with that. We were ok with 250. Shame!!!! With the pump, our new target is 100-150. In the last 6 months we haven't seen numbers in this range much and when he would get to 150, we gave him food to increase his sugar.
With the pump, we have been having some lows. Not scary, bad lows, but numbers under 100. A couple things here: 1) his mood is sooooo much better when he is under 150 2) mom's mood is sooooo much better when he's under 150 and 3) We are no longer OK with seeing 250 on his CGM readings. I have been trying to catch his lows before we hit 70's so we can provide a snack to bring him up instead of juice. I really hate it when he has juice because he goes from under 100 to 300 in 20 minutes. It's what the CDE's want to happen -- a fast rise, but I personally hate it because it causes such a mood swing that I almost need a Jagbomb to deal with him. Lows will be something we need to keep an eye out for and it's very common with people on the pump.
We were so accustomed to Trey's meltdowns that we started to just figure that's how he's going to be. Well we know now first hand that high blood sugar messes up your emotions. Uncle Jeff has made comments about that before, but until we actually got Trey in the right range with GOOD blood sugars, we didn't really see it. Now we do.
He wears the pump on one hip and the CGM on the other. I ordered him a SPIbelt so he can put them together in this nifty belt but it seems to be causing some problems with the tubing on the pump getting kinked (which leads to insulin not being given correctly). He is able to sleep with the pump on and it doesn't cause him any grief which is nice. He isn't a fan of changing the site every 3 days, but he says it's better than four shots a day in the tummy.
Today they are having a "holiday party" at school and they made a Witch's Brew. I've worked very close with the nurse and teacher to be sure Trey get's to participate in this. We are looking at roughly 25-35 grams of carbs of shit like cereal, chips, and candy. I cringe when I think about it, but I also realize that it's a MUST that he participates. We will be giving insulin to cover this snack-mess. He's a kid first .. Diabetic second. Enjoy your party buddy!!
Tuesday, October 11, 2016
The Pump
The day has arrived that Trey has the pump. I find it (searching for the right word .....) funny (not the word I want) that the very day Trey was diaganosed, people were already asking us when he could get the pump. It wasn't anything Jordan or I had thought about yet. We had so much to learn before "the pump" was a factor. I became annoyed with everyone's unsolicited advice. "Get an alert dog" or "Get him the pump." While I knew people meant well, there was so much we didn't yet know about diabetes and we knew that when the time was right, our doctor would help us with decisions like that.
A dog is not on our radar. A diabetic alert dog, in my opinion, is needed mainly for when your child has a lot of low blood sugars and you cannot catch them before they happen. Some kids drop really fast, and in that case, it's impossible to catch before it's too late. A dog help senses when this is happening and alerts the caregivers. We don't need that (at least not right now. Not saying we never will.). The other thing about a dog is that often times the dog catches the sugar drop before the child has a chance to FEEL the drop himself. I want Trey to learn how he feels when he is too high or too low. I don't want to rely on an animal to tell me those things - and then Trey is 18, the dog is dead and off to college he goes never knowing how he feels. Nope. Not the right thing for us at this time.
The pump is something we knew we would want to do when the doctor gave us the OK. There are many different types of pumps. After our appointment in August with Dr Gupta, he informed us the only pump he would allow Trey to have is the Medtronic pump. We trust him. Yesterday we spent the day in Sioux Falls with the CDE team and dietitians and discussed how this pump will change Trey's life. Thankfully, we didn't have to deal with Jenny, but rather a gal named Teresa. We actually had Teresa the first day in the hospital and we liked her. Jordan and I had to take some online courses about the pump and all of it's functions and then Teresa went over things in greater detail and programmed things that pertained directly to Trey's case. My favorite part of the day was when she looked over his numbers and asked what the food ratios were and when I said "57" for lunch and dinner she gave me a look like "WTF?" I said we were at 60, but Jenny changed to 57 after we begged her to give more insulin. Teresa said "Well he for sure needs more insulin. I will be changing these ratios." And after a few minutes of figuring and averaging, she lowered his lunch and dinner to 40. The most drastic change we've ever had! I am a little nervous for it as I don't want him to go low, but this way he can have foods that I typically restrict such as bread, pasta and milk! We've been begggggggggging Jenny for months ... Five minutes with a new CDE and BAM! Thank you!
I don't really want to get into great detail about the pump's functions but to simplify things, I will give you the jist of it. The pump will give Trey insulin 24 hours a day. We programmed the pump to give him a certain amount of insulin every hour. With the pump, you can change how much insulin is given every hour. He will get a certain amount from 9pm to 4am (every hour) and then at 4am we lowered the dosages until 9pm every hour. He will still get extra insulin with his meals. You recall my first posts about the math we had to do in order to figure out his dosages? That's no longer needed as the pump does that for us. We tell the pump how many carbohydrates he eats and it gives him the dosages it figures now. He will wear this pump non-stop. It can be suspended for swimming, shower, hockey, etc but never more than an hour at a time. (This will change as he grows and insulin is more) He had a hard time figuring out how to potty and sleep as it's clipped to his pants like his CGM. I should take bets to see how long before he rips one out!?
So the pump is on and we change it every three days. Until the 21st, he is using saline in the pump just so we can get used to the functions and buttons on the pump. We go back on the 21st and see where his numbers are again and then we use insulin. It's both exciting and nerve wracking at the same time. We are hoping with the pump his sugar numbers are between 100 and 150 and I'm hoping that with numbers in range, his mood improves!
Thursday, September 29, 2016
Irritated
So much on my mind. I want to first apologize in advance to my English teachers who may read this because it's going to be jumbled up and things are all jumbled in my mind right now.
* Jordan loves rubber braclets. You know, those that are typically seen worn by children!? Ha. He wanted to order 4 JDRF (Juvenile Diabetes Resoure Foundation) braclets for the 4 of us but low and behold, you can only order 100 at a time so he ordered .. 100. So, if anyone would like to sport a blue rubber bracelet that says "JDRF Creating a world without T1D" on it, let me know. I'll gladly send one to you. We are not taking any money for it - if you wish to give money, donate to JDRF or ADA (American Diabetes Assoc) instead! I said to the kids that we should give them out at Halloween this year instead of candy and both kids love the idea!
* Trey's nurse is nothing short of an angel. God knew how worried sick I was about sending my child to school and how nervous I was about who the nurse would be and if she would really do what needed to be done. He didn't fail me. If you ever meet a Heather Osborn who is a nurse at OMT, please give her a huge hug and tell her she's an angel. She keeps me updated all day long on Trey. He absolutely adores her. He loves skipping recess to hang out with her. They have a bond and it's way more than I ever could have wanted for my son. She goes above and beyond for Trey and I can never, ever thank her enough. (She just messaged me as I was typing this blog. She did an extra finger poke on Trey b/c his CGM said HIGH and she was worried. CGM was wayyyy off so I'm glad she poked him for a true BS number)
* JDRF made a huge announcement yesterday that the first Artificial Pancreas was FDA approved to be released in 2017. Great news, right?? Hold up. I'm bothered by this. I expected more from JDRF. Now people who are non diabetics are thinking "It's the cure!!! Everyone with diabetes can now have the AP!" Wrong. SOOOOOOOOOO wrong. Disappointment is huge. Let me educate you a bit. The human pancreas gives you both insulin and glucagon. It gives you the perfect amount based on the carbohydrates/sugar/food in your body. To duplicate that is hard, which is why there is not a cure for diabetes. It's being worked on ... There are several companies out there doing trials and testing and really trying to figure out how to make an artificial pancreas. What the announcement was for yesterday was for a insulin pump company, Medtronic, who has released a new, updated pump. What this pump will do is great and it is a step in the right direction for the AP, but it is NOT the AP! You read that right .... It's NOT an AP! This pump will work with it's own CGM to help adjust the basal rate of insulin and administer it automatically. (Yes, I know, I've already lost some of you ... Keep reading). You will have to still plug in your carb totals for each meal/snack and you still have to do finger pokes (face it, diabetics will always have to do finger pokes.) There is NO glucagon in this new Medtronic pump which means it is NOT the AP. So again, this new pump is a step in the right direction, but for JDRF to call it the AP is false. (And read above where I said the CGM was way off today for Trey - CGM is not always accurate and if this automatically affects the amount of insulin given --- it could be fatal.)
* With that being said, we are anxious to get to Sioux Falls and learn about the pump. Trey's pump (also from Medtronic) will hopefully bring down his blood sugar numbers since he will be getting continuous insulin all day long. We are still fighting higher numbers than what we would like and I'm racking my brain trying go figure out what I can do to change that.
* FOOD ... I hate food. I make a menu for my daycare lunch, daycare snacks, Trey's lunch and our family supper. I pack Trey's lunch every day. Sometimes I pack Delanie's lunch. I pack a box of snacks for Trey's school. I feel like everything I do is about food. I just had to throw that out there because I feel like this was a total RANT post so why not let it all out, right!?
* Something that cracks me up is this: Last Friday I attended the Groton FB game here in Aberdeen. I pull up to Wylie Park campground to pick up my mother and I was asked, "Where is Trey?" I walk into the football .. Stadium? ... And was stopped by an old HS friend. She asked how Trey was. I continue walking up to sit down and a former teacher of mine says, "No Trey??" I sit down by my aunt and she asks, "You didn't bring Trey?" Trey Trey Trey Trey .... You're so popular and you don't even know! Or do you!?
* Jordan loves rubber braclets. You know, those that are typically seen worn by children!? Ha. He wanted to order 4 JDRF (Juvenile Diabetes Resoure Foundation) braclets for the 4 of us but low and behold, you can only order 100 at a time so he ordered .. 100. So, if anyone would like to sport a blue rubber bracelet that says "JDRF Creating a world without T1D" on it, let me know. I'll gladly send one to you. We are not taking any money for it - if you wish to give money, donate to JDRF or ADA (American Diabetes Assoc) instead! I said to the kids that we should give them out at Halloween this year instead of candy and both kids love the idea!
* Trey's nurse is nothing short of an angel. God knew how worried sick I was about sending my child to school and how nervous I was about who the nurse would be and if she would really do what needed to be done. He didn't fail me. If you ever meet a Heather Osborn who is a nurse at OMT, please give her a huge hug and tell her she's an angel. She keeps me updated all day long on Trey. He absolutely adores her. He loves skipping recess to hang out with her. They have a bond and it's way more than I ever could have wanted for my son. She goes above and beyond for Trey and I can never, ever thank her enough. (She just messaged me as I was typing this blog. She did an extra finger poke on Trey b/c his CGM said HIGH and she was worried. CGM was wayyyy off so I'm glad she poked him for a true BS number)
* JDRF made a huge announcement yesterday that the first Artificial Pancreas was FDA approved to be released in 2017. Great news, right?? Hold up. I'm bothered by this. I expected more from JDRF. Now people who are non diabetics are thinking "It's the cure!!! Everyone with diabetes can now have the AP!" Wrong. SOOOOOOOOOO wrong. Disappointment is huge. Let me educate you a bit. The human pancreas gives you both insulin and glucagon. It gives you the perfect amount based on the carbohydrates/sugar/food in your body. To duplicate that is hard, which is why there is not a cure for diabetes. It's being worked on ... There are several companies out there doing trials and testing and really trying to figure out how to make an artificial pancreas. What the announcement was for yesterday was for a insulin pump company, Medtronic, who has released a new, updated pump. What this pump will do is great and it is a step in the right direction for the AP, but it is NOT the AP! You read that right .... It's NOT an AP! This pump will work with it's own CGM to help adjust the basal rate of insulin and administer it automatically. (Yes, I know, I've already lost some of you ... Keep reading). You will have to still plug in your carb totals for each meal/snack and you still have to do finger pokes (face it, diabetics will always have to do finger pokes.) There is NO glucagon in this new Medtronic pump which means it is NOT the AP. So again, this new pump is a step in the right direction, but for JDRF to call it the AP is false. (And read above where I said the CGM was way off today for Trey - CGM is not always accurate and if this automatically affects the amount of insulin given --- it could be fatal.)
* With that being said, we are anxious to get to Sioux Falls and learn about the pump. Trey's pump (also from Medtronic) will hopefully bring down his blood sugar numbers since he will be getting continuous insulin all day long. We are still fighting higher numbers than what we would like and I'm racking my brain trying go figure out what I can do to change that.
* FOOD ... I hate food. I make a menu for my daycare lunch, daycare snacks, Trey's lunch and our family supper. I pack Trey's lunch every day. Sometimes I pack Delanie's lunch. I pack a box of snacks for Trey's school. I feel like everything I do is about food. I just had to throw that out there because I feel like this was a total RANT post so why not let it all out, right!?
* Something that cracks me up is this: Last Friday I attended the Groton FB game here in Aberdeen. I pull up to Wylie Park campground to pick up my mother and I was asked, "Where is Trey?" I walk into the football .. Stadium? ... And was stopped by an old HS friend. She asked how Trey was. I continue walking up to sit down and a former teacher of mine says, "No Trey??" I sit down by my aunt and she asks, "You didn't bring Trey?" Trey Trey Trey Trey .... You're so popular and you don't even know! Or do you!?
Monday, September 19, 2016
Illness it was
It was an illness. Trey came down with a cold last Thursday which would explain his high sugar numbers that didn't want to come down no matter what I tried. I remember someone in the hospital telling us that we will probably know he is fighting something before he shows symptoms as the blood sugars will rise. Indeed!
After being up a lot Thursday night checking blood sugar and ketones in urine and giving extra insulin to help 1) sugars come down and 2) keep the ketones away, I caved and gave him cold medicine Friday. I recall I did this one other time since his diaganoses and it spiked his sugars pretty good. When we talked with the doc regarding what medicines to use, he said to use whatever we have. Just because he is diabetic, he doens't have to use Sugar Free medicine. Sugar Free medicine is hard to find and frankly, it doesn't work as well. The small spike from medicine isn't enough to do damage and it won't keep sugar levels elevated for very long. 45 minutes after I gave him the medicine, his sugar was almost 400. I did call the school and give them the heads up that he would be coming into the office shortly with high BS and the reason was because of the medicine. I asked the secretary to tell him to drink his water bottle and go back to class ... He would be fine. After just 15 minutes of being spiked, he started coming down really fast - Thankfully.
If you follow me on Facebook, you already know, but my amazing son gave himself his own shot for the first time on Saturday. I didn't ask him to, he just did it. It was truly a proud moment for both him and I. I was a little worried because he dialed up the pen to the right number and everything and that can be tricky but he nailed it. We agreed that he can keep doing his own shots, but he has to have an adult make sure he has the right dosage dialed in to avoid a big OOPS. Six months to the day we brought him home from Sioux Falls ... Doing his own shots. Just so proud of him. His teacher and his nurse both tell me how amazed they are at his maturity and how he handles everything. His nurse and him are so close and have a great bond and I can't even express how thankful that makes me. He's in great hands!
I did end up making a Facebook group page for Trey. Instead of posting everything on my own page, Trey has a group page called T1D Trey. It's a closed group so I do have to approve members. I don't want a bunch of crazies I don't know looking at my life. I also realize some people are annoyed with all my posts about Diabetes. Know what I say to those people?? Unfriend me. Not just on Facebook but in real life too. I don't need people like that in my life and neither does my family. We need support and help and prayers. To those of you who are always giving me encouraging words - I tear up every single time. When I think I'm failing at this job called MOTHER, your words touch me and I thank you. I don't have all the answers, I'm not the perfect mom, I'm not an expert on diabetes, but I can promise I try my hardest every single day to do the right thing for Trey. (And Lanie but that kid is a piece of cake now! Except that attitude she got from her grandma Lori!)
So Thank You -- truly. With YOU allowing me to educate you on T1D, I know someday you will pass on the information you've learned to help raise awareness. I'm going to try to get a 5K or a walk put together next spring with the money going to JDRF to help with the research on the artificial pancreas. If anyone knows how I go about this ... I'd GLADLY accept the help!
LOVE YOU ALL!
After being up a lot Thursday night checking blood sugar and ketones in urine and giving extra insulin to help 1) sugars come down and 2) keep the ketones away, I caved and gave him cold medicine Friday. I recall I did this one other time since his diaganoses and it spiked his sugars pretty good. When we talked with the doc regarding what medicines to use, he said to use whatever we have. Just because he is diabetic, he doens't have to use Sugar Free medicine. Sugar Free medicine is hard to find and frankly, it doesn't work as well. The small spike from medicine isn't enough to do damage and it won't keep sugar levels elevated for very long. 45 minutes after I gave him the medicine, his sugar was almost 400. I did call the school and give them the heads up that he would be coming into the office shortly with high BS and the reason was because of the medicine. I asked the secretary to tell him to drink his water bottle and go back to class ... He would be fine. After just 15 minutes of being spiked, he started coming down really fast - Thankfully.
If you follow me on Facebook, you already know, but my amazing son gave himself his own shot for the first time on Saturday. I didn't ask him to, he just did it. It was truly a proud moment for both him and I. I was a little worried because he dialed up the pen to the right number and everything and that can be tricky but he nailed it. We agreed that he can keep doing his own shots, but he has to have an adult make sure he has the right dosage dialed in to avoid a big OOPS. Six months to the day we brought him home from Sioux Falls ... Doing his own shots. Just so proud of him. His teacher and his nurse both tell me how amazed they are at his maturity and how he handles everything. His nurse and him are so close and have a great bond and I can't even express how thankful that makes me. He's in great hands!
I did end up making a Facebook group page for Trey. Instead of posting everything on my own page, Trey has a group page called T1D Trey. It's a closed group so I do have to approve members. I don't want a bunch of crazies I don't know looking at my life. I also realize some people are annoyed with all my posts about Diabetes. Know what I say to those people?? Unfriend me. Not just on Facebook but in real life too. I don't need people like that in my life and neither does my family. We need support and help and prayers. To those of you who are always giving me encouraging words - I tear up every single time. When I think I'm failing at this job called MOTHER, your words touch me and I thank you. I don't have all the answers, I'm not the perfect mom, I'm not an expert on diabetes, but I can promise I try my hardest every single day to do the right thing for Trey. (And Lanie but that kid is a piece of cake now! Except that attitude she got from her grandma Lori!)
So Thank You -- truly. With YOU allowing me to educate you on T1D, I know someday you will pass on the information you've learned to help raise awareness. I'm going to try to get a 5K or a walk put together next spring with the money going to JDRF to help with the research on the artificial pancreas. If anyone knows how I go about this ... I'd GLADLY accept the help!
LOVE YOU ALL!
Wednesday, September 14, 2016
Mid-September Update
There has been so much going on, that I've slacked on my blogging. As I logged in today, I noticed I didn't even finish (or publish!) the last blog about his first day of Kindergarten back in August. Even though it's unfinished, I published it today.
Trey's had a rough time at school. His CGM alert is set at 320, which is high. We didn't think he would run that high and we've now found out we were wrong. He buzzes high ... Daily. To say we are all frustrated is an understatement.
The last week of August, we worked closely with his nurse, Mrs Osborn, and kept close tabs on his sugar numbers. While we realize that things like stress, nerves and growth spurts all affect blood sugars, we knew that his high numbers was more to do with lack of insulin. Remember at his doctors appointment, his Endocrinoligst even said he wasn't getting enough insulin. Trey was missing PE classes and recess's due to his high numbers and he hit the point (already ... Week 1) that he didn't want to go to school.
It was time for mom and dad to fight for their son. Jordan reached out to Trey's Diabetes Educator (DE) and she failed to return his messages ... Two days in a row. He then reached out to Trey's Endo and nurse (Emily) saying we are done with his DE Jenny and we need someone else to help us make the appropriate changes to Trey's insulin. Jenny finally phoned Jordan back. She made some accusations that didn't sit well with him, and she tried blaming Trey's numbers on school anxiety. When he mentioned Dr Gupta suggesting more insulin, Jenny said she never knew about that. He told her Trey was missing out at school and she WOULD fix his insulin numbers or we would take matters into our own hands. The following day, Thursday, she messaged Jordan with increased insulin across the board and I honestly cried tears of relief and joy. No, I'm not a diabetes educator and no, I'm not an Endocrinoligist but I play one 24/7. I am not looking at numbers on a spreadsheet, but looking at my SON. I know our life. I know what he eats every meal and every snack. I know what type of activity he's doing on a daily basis. I know when he is tired or when he's stressed/nervous. I know when he is feeling good and when he isn't. I know my son. Diabetes affects everyone different and every day is different, so for a DE who is 3 hours away and only checks in with us once a month and looks at his numbers on a sheet ... She honestly can't tell me what is right for my son. When Emily called Jordan back, he told her that it's time to listen to the patient. We've been asking since June for more insulin while DE's answer was to give him more carbs instead. She wanted me to feed him 60-80 carbs per meal. WHAT!?!?!? HE'S 5! So we won that battle, finally. And I finally got Jordan to see how pathetic of a DE Jenny is. That Friday at school, Trey had beautiful blood sugars due to his increased insulin dosages. Amen. Victory!
We travelled to Seattle last week. Getting through security with all of Trey's supplies was a piece of cake. No issues at all and that was a relief. Unfortunately, Trey ran pretty high most of the vacation. While our food intake was pretty good, we were on a 2 hour time zone difference, an elevation difference (yes, even elevation can affect BS numbers ... Who knew?!), and we walked MILES a day. It baffles people when I tell them that too much activity or exercise can raise blood sugars because if you are an adult with T1 or T2, the doctors tell you to exercise to keep sugars low. In kids, it's not the case. Even with increased insulin dosages, we had a hard time keeping his numbers in range.
We've started another week at school by being pretty high in the numbers. Yesterday no matter what we did, even with 3 correction doses of insulin, he couldn't stay below 250. He could be coming down with some sort of illness - guess we will find out. Todays' numbers have been better.
Jordan and I have great communication with Trey's school nurse, Mrs Osborn. She's never afraid to call or text us with an update or an FYI or asking a question. Trey and her are best of friends. Today her message said he didn't want to go outside for recess, he wanted to stay inside with her and help her with things so she allowed him to (he was HIGH anyway). She said "I can't resist those big brown eyes. They get me every time." Tell me about it! Haha
I began reading the three books regarding the insulin pump last night. WOW we will have a lot to learn, but I truly feel this is going to be the best answer for Trey to keep his numbers in range.
As a few people have suggested, I have not made a Facebook page for Trey. Between my personal page and this blog, I think I cover most of it. You can type your email into the box on the right and it will send you an email when I update the blog. Thanks for reading!
Trey's had a rough time at school. His CGM alert is set at 320, which is high. We didn't think he would run that high and we've now found out we were wrong. He buzzes high ... Daily. To say we are all frustrated is an understatement.
The last week of August, we worked closely with his nurse, Mrs Osborn, and kept close tabs on his sugar numbers. While we realize that things like stress, nerves and growth spurts all affect blood sugars, we knew that his high numbers was more to do with lack of insulin. Remember at his doctors appointment, his Endocrinoligst even said he wasn't getting enough insulin. Trey was missing PE classes and recess's due to his high numbers and he hit the point (already ... Week 1) that he didn't want to go to school.
It was time for mom and dad to fight for their son. Jordan reached out to Trey's Diabetes Educator (DE) and she failed to return his messages ... Two days in a row. He then reached out to Trey's Endo and nurse (Emily) saying we are done with his DE Jenny and we need someone else to help us make the appropriate changes to Trey's insulin. Jenny finally phoned Jordan back. She made some accusations that didn't sit well with him, and she tried blaming Trey's numbers on school anxiety. When he mentioned Dr Gupta suggesting more insulin, Jenny said she never knew about that. He told her Trey was missing out at school and she WOULD fix his insulin numbers or we would take matters into our own hands. The following day, Thursday, she messaged Jordan with increased insulin across the board and I honestly cried tears of relief and joy. No, I'm not a diabetes educator and no, I'm not an Endocrinoligist but I play one 24/7. I am not looking at numbers on a spreadsheet, but looking at my SON. I know our life. I know what he eats every meal and every snack. I know what type of activity he's doing on a daily basis. I know when he is tired or when he's stressed/nervous. I know when he is feeling good and when he isn't. I know my son. Diabetes affects everyone different and every day is different, so for a DE who is 3 hours away and only checks in with us once a month and looks at his numbers on a sheet ... She honestly can't tell me what is right for my son. When Emily called Jordan back, he told her that it's time to listen to the patient. We've been asking since June for more insulin while DE's answer was to give him more carbs instead. She wanted me to feed him 60-80 carbs per meal. WHAT!?!?!? HE'S 5! So we won that battle, finally. And I finally got Jordan to see how pathetic of a DE Jenny is. That Friday at school, Trey had beautiful blood sugars due to his increased insulin dosages. Amen. Victory!
We travelled to Seattle last week. Getting through security with all of Trey's supplies was a piece of cake. No issues at all and that was a relief. Unfortunately, Trey ran pretty high most of the vacation. While our food intake was pretty good, we were on a 2 hour time zone difference, an elevation difference (yes, even elevation can affect BS numbers ... Who knew?!), and we walked MILES a day. It baffles people when I tell them that too much activity or exercise can raise blood sugars because if you are an adult with T1 or T2, the doctors tell you to exercise to keep sugars low. In kids, it's not the case. Even with increased insulin dosages, we had a hard time keeping his numbers in range.
We've started another week at school by being pretty high in the numbers. Yesterday no matter what we did, even with 3 correction doses of insulin, he couldn't stay below 250. He could be coming down with some sort of illness - guess we will find out. Todays' numbers have been better.
Jordan and I have great communication with Trey's school nurse, Mrs Osborn. She's never afraid to call or text us with an update or an FYI or asking a question. Trey and her are best of friends. Today her message said he didn't want to go outside for recess, he wanted to stay inside with her and help her with things so she allowed him to (he was HIGH anyway). She said "I can't resist those big brown eyes. They get me every time." Tell me about it! Haha
I began reading the three books regarding the insulin pump last night. WOW we will have a lot to learn, but I truly feel this is going to be the best answer for Trey to keep his numbers in range.
As a few people have suggested, I have not made a Facebook page for Trey. Between my personal page and this blog, I think I cover most of it. You can type your email into the box on the right and it will send you an email when I update the blog. Thanks for reading!
Kindergarten here he comes!
Trey had his first day of school on Wednesday. On Monday night we had Open House where we met the teacher and saw the classroom. His teacher is the same who had Delanie and is a total sweetheart. We saw where Mrs Osborn, the nurse, has her office and left some goodies in her fridge for Trey.
Tuesday we took him to a meeting with his teacher since she missed the meeting the week before. She admitted she was nervous but said she'd sure do her best to look out for him. She was amazed by his CGM and how he knew what it meant.
Wednesday was the day! He went off to school as mom sat at home and cried off and on all day. I had my phone with me at all times and kept checking the Dexcom app to see what his number was. He ran a little high all day but we expected that. Once in the afternoon it buzzed at me with a high alert and I wondered if he did what he was supposed to do incase of a high. He is to raise it in the air so the teacher knew something wasn't right. When he got home at 3:10 I couldn't wait to hug him and again, I cried. Tears of relief I think. I asked about his high and he said he felt it buzz, looked at it, and put it back. I gave him a look and he said, "I was fine mom. I was fine." but I reminded him even if he thinks he is fine, he needs to tell the teacher so they know. He said he would next time.
........
Tuesday we took him to a meeting with his teacher since she missed the meeting the week before. She admitted she was nervous but said she'd sure do her best to look out for him. She was amazed by his CGM and how he knew what it meant.
Wednesday was the day! He went off to school as mom sat at home and cried off and on all day. I had my phone with me at all times and kept checking the Dexcom app to see what his number was. He ran a little high all day but we expected that. Once in the afternoon it buzzed at me with a high alert and I wondered if he did what he was supposed to do incase of a high. He is to raise it in the air so the teacher knew something wasn't right. When he got home at 3:10 I couldn't wait to hug him and again, I cried. Tears of relief I think. I asked about his high and he said he felt it buzz, looked at it, and put it back. I gave him a look and he said, "I was fine mom. I was fine." but I reminded him even if he thinks he is fine, he needs to tell the teacher so they know. He said he would next time.
........
Thursday, August 18, 2016
Where have I been!?
I didn't realize it's been so long since I last blogged. I'll catch you up now on what the last 22 days have been like for us.
It has become a sort of tradition for Jordan and I to make a weekend trip over to New Richmond, WI in the summer for a large dirt track race. Delanie has gone with a few times and now it's Trey who goes along. Due to his diabetes, I wasn't sure this was a good thing for us to tackle this year. After much thought, I agreed that Trey could go but I had to go with him. Trusting someone else to take care of my child for 4 days at 8 hours away was hard for me. Now, let me go on record saying that I DO trust Jordan to keep track of Trey's sugars. BUT, I've also been around Jordan at the races before and I know how into the race he gets and forgets that there is a little boy who has to go potty, who is starving, who has a bloody finger from racing his cars in the gravel, etc. The other thing Jordan isn't wonderful about is keeping track of and knowing what is a good food and bad food for Trey.
Anyway, we head off to Cedar Lake Speedway and had a great four days over East. Trey's sugars ran a little higher than we like, but took into consideration that 1) we were in a car for 8 hours 2) it was HOT 3) greasy food (except for the snacks mom snuck in) and we did give a little bit of extra insulin each day to help keep him feeling his best under the circumstances.
While over in WI, Trey learned more about the insulin pump. Trey's Great Uncle Jeff has T1D as well and got the pump about 15 years ago. He showed Trey some of the features and talked to him about how it works. You see, Trey had told us for a couple months that he didn't want the pump. He couldn't tell us why, but we wanted him to see what it actually was and how it worked before deciding for sure "NO" would be our answer when meeting with his doctor. Trey and Jeff have always had a close bond, but this T1D has made it that much stronger and while I hate that Jeff has the disease as well, I'm forever thankful that Trey has a huge connection to Jeff and they can help each other out. In fact, after leaving a restaurant for lunch one day, Trey yelled across the parking lot to Jeff, "Take your shot, Jeff!!" We all cracked up laughing.
We had our three month Endocrinoloist appointment in Sioux Falls on the 9th. At these three month checks, the doctor checks your A1C level which is a pretty important number. A1C is an average blood sugar for the past three months. When Trey was first diaganosed he was 7.7 (or 7.8 - can't remember) which isn't GOOD, but it's not bad either. That was an average of around 187 blood sugar. Trey's A1C is 10.3. I almost fainted. That is terrrrrrrrrible. I felt so defeated! I'm very careful about what he eats, he doesn't get full carbs/sugar snacks, we balance with so much protein, I make sure he gets out and gets some exercise. I was disappointed, frustrated and sad. All his doctor said was, "He needs more insulin." I have been saying for the last couple of months that Trey needs his food ratios changed meaning he wasn't getting enough insulin as his blood sugar would hover around 250 instead of 150. Ya'all know my feelings on his diabetes educator from SF, and I was beyond frustrated with her for not changing anything for him. Now I was mad. I even told the doctor, "I have said that for two months. I do not have a degree in the medical field and I've only dealt with diabetes for 5 months, but I know my kid and I know what carbs I put into my kid and I have been asking Jenny for more insulin!" More insulin it is ... Although we have yet to hear from Jenny about food ratios. I'm confident in my own judgements now and do not feel nervous when I give him a little extra insulin to help bring him down. This is something I asked doc about and he said that yes, I can do this if I feel necessary.
We asked about the pump and doc said Trey's ready for it anytime. While Jordan and I's mind has been made up about this subject, we still had to sit down with Trey and really discuss it with him, because I refuse to do something to him that he absolutely does not want. This is HIS body and HIS disease and I have to let him have some say in it. If he doens't mind the shots, who am I to force him to wear yet another 'appliaance' on his body? We had lunch at a restaurant and Trey asked if we could do his shot in the car, instead of in the restaurant. When I asked him why, he said he didn't want people to see him do it. 1) I don't ever want him I to feel embarrassed or ashamed by his disease and 2) I totally understood where he was coming from. I told him we could do it in the car but followed it up with "If you had the pump, we could plug in your carbs and hit the button three times like Uncle Jeff and no one will even know what we were doing." That's all it took for him to say, "Yeah, I think we should try the pump." His Medtronic pump is due to arrive tomorrow, Aug 19th. We will have to be taught how to use this as it's not just a matter of shooting insulin into his tummy. We have decided to wait until after we return from Seattle in 3 weeks before we hook this up. Know that the pump is only going to eliminate his insulin shots. Finger pokes still happen, watching carbs is still a must. The pump just changes how insulin is distributed. It works more like a human pancreas. For more information, see www.medtronicdiabetes.com
If you're friends with me on Facebook, you've seen my outrage by the school system here and trying to get a meeting set up to explain Trey's diabetes, since he will be the first one in the school with the disease. It was a long few weeks planning it, but I'm happy to say yesterday we got the meeting done and the school itself along with the district signed the 504 I made up. (A 504 is a part of the ADA which protects the student. The school has to follow the 504 as it is a legal document) I am an organized person. I had copies of the 504 made for his direct teachers (although legally now each teacher has to receive a copy of it b/c I requested that), I had folders made up with information on diabetes itself, food lists, formula of carb ratios, exercise sheet, doctors orders, glucagon, emergency contacts, and more for his direct teachers. I have a lunch menu typed up with carb counts and an index card for each day to go in his lunch box for the nurse to figure insulin. I have 2 emergency kits packed full of anything he would need during the day. I have a large box of snacks for him to keep at school with the carb count written on it in Sharpie. Like I told everyone in our meeting - I want this to be as simple as it can be, even though there is nothing simple about diabetes. The only tweak we are making right now would be to have snack a half hour earlier than planned due to Trey having recess and PE back to back. This will also allow him to have a better blood sugar number before lunch. He checked his sugar in front of everyone and only two teachers cringed. I think they were all impressed with my little 5 year old kid.
So next week is the week .... The week I've dreaded for so long. Trey goes to school. My baby boy all grown up, headed to Kingergarten. As most moms of Kingergarten kids, we are nervous, but sending an 'ill' child to K and expect all these people to keep keep track of him just intensifies it even more. One thing I know for sure is he will steal hearts of school staff. His music teacher told me yesterday, "He's so brave!" And she had tears in her eyes. He is brave. He is strong. He will educate the students and staff of OM Tiffany on Type 1 Diabetes and he will change someone's life, that I know for certain.
It has become a sort of tradition for Jordan and I to make a weekend trip over to New Richmond, WI in the summer for a large dirt track race. Delanie has gone with a few times and now it's Trey who goes along. Due to his diabetes, I wasn't sure this was a good thing for us to tackle this year. After much thought, I agreed that Trey could go but I had to go with him. Trusting someone else to take care of my child for 4 days at 8 hours away was hard for me. Now, let me go on record saying that I DO trust Jordan to keep track of Trey's sugars. BUT, I've also been around Jordan at the races before and I know how into the race he gets and forgets that there is a little boy who has to go potty, who is starving, who has a bloody finger from racing his cars in the gravel, etc. The other thing Jordan isn't wonderful about is keeping track of and knowing what is a good food and bad food for Trey.
Anyway, we head off to Cedar Lake Speedway and had a great four days over East. Trey's sugars ran a little higher than we like, but took into consideration that 1) we were in a car for 8 hours 2) it was HOT 3) greasy food (except for the snacks mom snuck in) and we did give a little bit of extra insulin each day to help keep him feeling his best under the circumstances.
While over in WI, Trey learned more about the insulin pump. Trey's Great Uncle Jeff has T1D as well and got the pump about 15 years ago. He showed Trey some of the features and talked to him about how it works. You see, Trey had told us for a couple months that he didn't want the pump. He couldn't tell us why, but we wanted him to see what it actually was and how it worked before deciding for sure "NO" would be our answer when meeting with his doctor. Trey and Jeff have always had a close bond, but this T1D has made it that much stronger and while I hate that Jeff has the disease as well, I'm forever thankful that Trey has a huge connection to Jeff and they can help each other out. In fact, after leaving a restaurant for lunch one day, Trey yelled across the parking lot to Jeff, "Take your shot, Jeff!!" We all cracked up laughing.
We had our three month Endocrinoloist appointment in Sioux Falls on the 9th. At these three month checks, the doctor checks your A1C level which is a pretty important number. A1C is an average blood sugar for the past three months. When Trey was first diaganosed he was 7.7 (or 7.8 - can't remember) which isn't GOOD, but it's not bad either. That was an average of around 187 blood sugar. Trey's A1C is 10.3. I almost fainted. That is terrrrrrrrrible. I felt so defeated! I'm very careful about what he eats, he doesn't get full carbs/sugar snacks, we balance with so much protein, I make sure he gets out and gets some exercise. I was disappointed, frustrated and sad. All his doctor said was, "He needs more insulin." I have been saying for the last couple of months that Trey needs his food ratios changed meaning he wasn't getting enough insulin as his blood sugar would hover around 250 instead of 150. Ya'all know my feelings on his diabetes educator from SF, and I was beyond frustrated with her for not changing anything for him. Now I was mad. I even told the doctor, "I have said that for two months. I do not have a degree in the medical field and I've only dealt with diabetes for 5 months, but I know my kid and I know what carbs I put into my kid and I have been asking Jenny for more insulin!" More insulin it is ... Although we have yet to hear from Jenny about food ratios. I'm confident in my own judgements now and do not feel nervous when I give him a little extra insulin to help bring him down. This is something I asked doc about and he said that yes, I can do this if I feel necessary.
We asked about the pump and doc said Trey's ready for it anytime. While Jordan and I's mind has been made up about this subject, we still had to sit down with Trey and really discuss it with him, because I refuse to do something to him that he absolutely does not want. This is HIS body and HIS disease and I have to let him have some say in it. If he doens't mind the shots, who am I to force him to wear yet another 'appliaance' on his body? We had lunch at a restaurant and Trey asked if we could do his shot in the car, instead of in the restaurant. When I asked him why, he said he didn't want people to see him do it. 1) I don't ever want him I to feel embarrassed or ashamed by his disease and 2) I totally understood where he was coming from. I told him we could do it in the car but followed it up with "If you had the pump, we could plug in your carbs and hit the button three times like Uncle Jeff and no one will even know what we were doing." That's all it took for him to say, "Yeah, I think we should try the pump." His Medtronic pump is due to arrive tomorrow, Aug 19th. We will have to be taught how to use this as it's not just a matter of shooting insulin into his tummy. We have decided to wait until after we return from Seattle in 3 weeks before we hook this up. Know that the pump is only going to eliminate his insulin shots. Finger pokes still happen, watching carbs is still a must. The pump just changes how insulin is distributed. It works more like a human pancreas. For more information, see www.medtronicdiabetes.com
If you're friends with me on Facebook, you've seen my outrage by the school system here and trying to get a meeting set up to explain Trey's diabetes, since he will be the first one in the school with the disease. It was a long few weeks planning it, but I'm happy to say yesterday we got the meeting done and the school itself along with the district signed the 504 I made up. (A 504 is a part of the ADA which protects the student. The school has to follow the 504 as it is a legal document) I am an organized person. I had copies of the 504 made for his direct teachers (although legally now each teacher has to receive a copy of it b/c I requested that), I had folders made up with information on diabetes itself, food lists, formula of carb ratios, exercise sheet, doctors orders, glucagon, emergency contacts, and more for his direct teachers. I have a lunch menu typed up with carb counts and an index card for each day to go in his lunch box for the nurse to figure insulin. I have 2 emergency kits packed full of anything he would need during the day. I have a large box of snacks for him to keep at school with the carb count written on it in Sharpie. Like I told everyone in our meeting - I want this to be as simple as it can be, even though there is nothing simple about diabetes. The only tweak we are making right now would be to have snack a half hour earlier than planned due to Trey having recess and PE back to back. This will also allow him to have a better blood sugar number before lunch. He checked his sugar in front of everyone and only two teachers cringed. I think they were all impressed with my little 5 year old kid.
So next week is the week .... The week I've dreaded for so long. Trey goes to school. My baby boy all grown up, headed to Kingergarten. As most moms of Kingergarten kids, we are nervous, but sending an 'ill' child to K and expect all these people to keep keep track of him just intensifies it even more. One thing I know for sure is he will steal hearts of school staff. His music teacher told me yesterday, "He's so brave!" And she had tears in her eyes. He is brave. He is strong. He will educate the students and staff of OM Tiffany on Type 1 Diabetes and he will change someone's life, that I know for certain.
Wednesday, July 27, 2016
Feelings
I've always been more of an introvert than an extrovert. I don't mind keeping my circle small and on most days, I'd rather be home with my kids than out doing something that involves a crowd of people. Something I've realized since March is that I'm becoming MORE of an introvert now and quite honestly, I'm not sure that's good.
This blog is revolved around diabetes. The good, the bad, the ugly and hopefully sometimes, the positives. Diabetes has become our new life. I don't wish it upon anyone. I don't want sympathy, I want empathy. This was the hand we were dealt and as I've said, I will try to spin it around so something great comes from something horrible.
But life sucks sometimes, and life as a mother of a T1D child sucks. (Insert "poor Natalie" here right?!)
I used to enjoy a night at Lagers sipping on a Morgan Diet, bitching about my job, my kids, my husband and life in general. I needed that time away from everyday life. I needed to regroup and I enjoyed those couple of hours with some good friends. I relied on my Girls Night girls once a month to be Natalie, instead of Mom. I needed it.
I would have to say NOW more than EVER .... I need it. I need friends. I need a couple hours at Lagers. I need my monthly Girls Night gals. I need that hour long massage. I need ME time. I need FUN. Then reality sets in ... Who is going to watch the kids? Will they check Trey's sugars? Do they know what he can and cannot eat? What happens if he goes too low? Should I pack his whole backpack or will just his kit be sufficient? By the time I think everything through, I've talked myself into going anywhere. Fact is - it's easier to just stay home than to be out and about TRYING to have fun, but secretly dying inside because I'm so worried about my kid.
Diabetes is a 24/7 job. Even when Trey is sleeping, I check his CGM for his blood sugar number. I constantly watch the clock so I don't forget to have him do his finger poke 2 hours after his meal. I count carbs and plan our supper and lunches around what Trey can eat. When he goes to the bathroom, I sometimes have to check his urine for ketones. I don't sleep through the night anymore. When I hear Trey get up to use the bathroom at midnight, I grab my phone in a panick to see if his sugar is too high. When I see him in the morning I always ask "Did dad give you your shots yet?" Instead of "Good Morning buddy. How did you sleep?" It's always, always on my mind; and it's exhausting. So damn exhausting. Not the kind of exhausting you have from a long day with a screaming baby (yep, yesterday in fact!) and not the exhausting day you had from running that 5K you signed up for. Mentally exhausted. To the point where I lose track of the simplest things because I'm trying to remember at 5:30 Trey needs to check his sugar.
I don't know what to talk about to people. I feel like all I know about anymore is diabetes. But please, don't ask me, "How is Trey?" Because depending on the day, it is a loaded question. I appreciate your concern, but yet I don't know what you want me to say in return and sometimes the question reduces me to tears and sometimes it throws me into a fit of anger. I feel as if I go to Girls Night, I will have nothing to talk about. My life is diabetes. It's hard for me to think of sometimes else. It sucks, but that is the reality right now.
It's hard to talk about something that so many of your friends and relatives don't understand. It's not a diss to my friends and family - it's simply a fact. Being with my mother for a weekend, I made her handle Trey, and I know she was exhausted. My inlaws had Trey for a day and I could tell they were so overwhelmed. But until you live it, 24/7, you can't possibly understand or know. And I don't want to be out for drinks and bore you to death with talk of diabetes ... Because as much as I want to bring awareness, I also don't want to talk about it.
I almost have lost who I am. Or maybe, this is who I was supposed to be all along!? I know the sarcastic bitch is still here somewhere, she just has been sidelined by an injury, but I hope eventually, when she gets a grasp on this, she'll be back better than ever. I just hope that in the meantime, her Girls haven't forgotten about her because she will need them more than she ever has.
This blog is revolved around diabetes. The good, the bad, the ugly and hopefully sometimes, the positives. Diabetes has become our new life. I don't wish it upon anyone. I don't want sympathy, I want empathy. This was the hand we were dealt and as I've said, I will try to spin it around so something great comes from something horrible.
But life sucks sometimes, and life as a mother of a T1D child sucks. (Insert "poor Natalie" here right?!)
I used to enjoy a night at Lagers sipping on a Morgan Diet, bitching about my job, my kids, my husband and life in general. I needed that time away from everyday life. I needed to regroup and I enjoyed those couple of hours with some good friends. I relied on my Girls Night girls once a month to be Natalie, instead of Mom. I needed it.
I would have to say NOW more than EVER .... I need it. I need friends. I need a couple hours at Lagers. I need my monthly Girls Night gals. I need that hour long massage. I need ME time. I need FUN. Then reality sets in ... Who is going to watch the kids? Will they check Trey's sugars? Do they know what he can and cannot eat? What happens if he goes too low? Should I pack his whole backpack or will just his kit be sufficient? By the time I think everything through, I've talked myself into going anywhere. Fact is - it's easier to just stay home than to be out and about TRYING to have fun, but secretly dying inside because I'm so worried about my kid.
Diabetes is a 24/7 job. Even when Trey is sleeping, I check his CGM for his blood sugar number. I constantly watch the clock so I don't forget to have him do his finger poke 2 hours after his meal. I count carbs and plan our supper and lunches around what Trey can eat. When he goes to the bathroom, I sometimes have to check his urine for ketones. I don't sleep through the night anymore. When I hear Trey get up to use the bathroom at midnight, I grab my phone in a panick to see if his sugar is too high. When I see him in the morning I always ask "Did dad give you your shots yet?" Instead of "Good Morning buddy. How did you sleep?" It's always, always on my mind; and it's exhausting. So damn exhausting. Not the kind of exhausting you have from a long day with a screaming baby (yep, yesterday in fact!) and not the exhausting day you had from running that 5K you signed up for. Mentally exhausted. To the point where I lose track of the simplest things because I'm trying to remember at 5:30 Trey needs to check his sugar.
I don't know what to talk about to people. I feel like all I know about anymore is diabetes. But please, don't ask me, "How is Trey?" Because depending on the day, it is a loaded question. I appreciate your concern, but yet I don't know what you want me to say in return and sometimes the question reduces me to tears and sometimes it throws me into a fit of anger. I feel as if I go to Girls Night, I will have nothing to talk about. My life is diabetes. It's hard for me to think of sometimes else. It sucks, but that is the reality right now.
It's hard to talk about something that so many of your friends and relatives don't understand. It's not a diss to my friends and family - it's simply a fact. Being with my mother for a weekend, I made her handle Trey, and I know she was exhausted. My inlaws had Trey for a day and I could tell they were so overwhelmed. But until you live it, 24/7, you can't possibly understand or know. And I don't want to be out for drinks and bore you to death with talk of diabetes ... Because as much as I want to bring awareness, I also don't want to talk about it.
I almost have lost who I am. Or maybe, this is who I was supposed to be all along!? I know the sarcastic bitch is still here somewhere, she just has been sidelined by an injury, but I hope eventually, when she gets a grasp on this, she'll be back better than ever. I just hope that in the meantime, her Girls haven't forgotten about her because she will need them more than she ever has.
Monday, July 25, 2016
A Weekend Attitude Change
A couple of quick things ....
1) You can now put your email into the "Follow by Email" spot over to the right, and Blogger will email you a notice when I post something new.
2) I've reduced the main screen to just one post at a time. To read other older posts, please see the titles to the right under Trey's photograph.
3) Thanks to anyone who reads this. As I said in the very first post, this was meant for me to just get things off my brain and to possibly raise a little awareness to anyone who happened to stumble upon the blog. If you know me, you know I don't sugar coat anything - I like to tell it like it is, and this blog won't be anything less.
4) I apologize for grammatical errors. I had amazing English teachers in school but I never did see an A+
Since I've posted last, we've had some pretty cool and fun things I'd like so share.
Friday was a terrific day in the fact that Trey decided to poke his own finger. I wish I could explain my emotional state when he did this. You may think a finger poke isn't a big deal, but when you're five and you know it's going to sting when you do it ... It's a huge deal. I honestly cried because I was so proud of him. He now is able to do the whole process himself which has been awesome to watch. He gathered all the daycare kids around today and said, "watch this" as he did it start to finish. The kids have seen us do this before, so the fact he did it himself didn't impress them as much as it impressed me or him. Haha
Friday Trey's numbers ran pretty high and the same held true for Saturday as well. That's what's frustrating about diabetes - there is not always a known reason why sugars increase or decrease. This is my number 1 complaint ... Diabetes doesn't make sense. An extra dose of insulin brought him numbers down and we pushed fluids to help flush out the ketones in his urine as well. High sugars often mean ketones, but not always. In this case, it did. If his ketones would not go down, we would've made an ER visit so they could give him an IV of fluid to flush him out and keep him from going into Ketoacidoses which is deadly.
After a weekend of highs, my mind couldn't help but to wander back to the Low Carb High Fat diet craze. I did my own research and found some recipes that I thought maybe we needed to try. I'm so glad we did.
Fathead Pizza I talked about on my Facebook page. It's a recipe I've seen several times and I've read nothing but good reviews from even the pickiest kids. Trey liked it, I liked it, Jordan liked it, Delanie wanted the real stuff (as we all did, but we all agree this didn't turn out as bad as some expected! It's a keeper!)
Fathead Recipe
1 1/2 cups Shredded Mozzerella Cheese (I used Colby/Jack as it's all I had)
2 T Cream Cheese (I used 1/3 less fat)
3/4 c Almond Flour ($11/pound at Wal-Mart in baking isle)
1 egg
1 tsp xanthan gum (optional and I did NOT use this)
Garlic powder to taste
Sea salt
Preheat oven to 425*. Put cheeses into a microwave safe bowl and heat for 1 minute 20 seconds. Stir cheeses until mixed. Add Almond Flour, Egg and xanthan gum. If too stringy, heat another 30 seconds. Wet hands and form into a ball on a baking sheet with parchment paper. Spread out with wet hands to your preference of thin-ness. Poke crust all over with a fork, bake for 8 minutes. Add your pizza toppings and cook another 4+ minutes until the crust is as crunchy as you prefer.
You can also make this into a bun substitute, just break up the dough into smaller balls. It's quick, easy and healthy if you're not looking at fat content.
The other recipe we made was called Fat Bombs. This is for the sweet tooth! I tried it, spit it out. Delanie is my Hershey lover and she ate it but said, "This is terrible but I didn't want to tell Trey" and Trey ate four pieces thinking it's delicious which is wonderful.
Fat Bombs
3/4 cup melted coconut oil (baking isle)
9 1/2 T Almond Butter (by peanut butter in Walmart)
60 drops of liquid Stevia (baking isle)
3 T cocoa
9 T melted salted butter
Mix all together. Pour into mini muffin mold, a pan, candy mold (or whatever you have!) and put into freezer. These melt fast when not cold!
One Fat Bomb is 14 grams of fat, 145 calories, 1.5 grams of protein and 1.6 carbs.
If any of you make these, let me know if you like it! I have a few more items on my list to try such as pancakes and biscuits. I will post details of those when we get it made.
To finish, I have had much peace this weekend after finding an amazing Facebook support group. Reading post after post with real parents having the same real issues, thoughts and questions I have has made me really look at things different and even give myself a small pat on the back knowing that while I cannot always produce perfect sugars for my child, I am doing what I can do to keep him healthy, eating better and teaching him to make the right food choices along the way. Yeah, there will be days he devours a Snickers much to my dismay, but don't we all splurge a little every now and then?! I also read an amazing piece on insulin that has changed my thinking drastically. I see a child getting 40 units of insulin a day and I shriek in fear that this "drug" will harm him. In fact, it's quite the opposite .. We all have insulin in us (well, unless you're diabetic). Your body MAKES it, it's a hormone, you NEED it to live. If you don't produce insulin, you go into Keto and you die. So how I view insulin is different and I'm thankful for that.
PS: my other highlight of the weekend was reading that a mom donates her "expired" insulin to her local vet. I contacted our Vet office and they indeed can use it!!! How awesome!! No more tossing away 150 units of insulin a month!!!!!!!!
1) You can now put your email into the "Follow by Email" spot over to the right, and Blogger will email you a notice when I post something new.
2) I've reduced the main screen to just one post at a time. To read other older posts, please see the titles to the right under Trey's photograph.
3) Thanks to anyone who reads this. As I said in the very first post, this was meant for me to just get things off my brain and to possibly raise a little awareness to anyone who happened to stumble upon the blog. If you know me, you know I don't sugar coat anything - I like to tell it like it is, and this blog won't be anything less.
4) I apologize for grammatical errors. I had amazing English teachers in school but I never did see an A+
Since I've posted last, we've had some pretty cool and fun things I'd like so share.
Friday was a terrific day in the fact that Trey decided to poke his own finger. I wish I could explain my emotional state when he did this. You may think a finger poke isn't a big deal, but when you're five and you know it's going to sting when you do it ... It's a huge deal. I honestly cried because I was so proud of him. He now is able to do the whole process himself which has been awesome to watch. He gathered all the daycare kids around today and said, "watch this" as he did it start to finish. The kids have seen us do this before, so the fact he did it himself didn't impress them as much as it impressed me or him. Haha
Friday Trey's numbers ran pretty high and the same held true for Saturday as well. That's what's frustrating about diabetes - there is not always a known reason why sugars increase or decrease. This is my number 1 complaint ... Diabetes doesn't make sense. An extra dose of insulin brought him numbers down and we pushed fluids to help flush out the ketones in his urine as well. High sugars often mean ketones, but not always. In this case, it did. If his ketones would not go down, we would've made an ER visit so they could give him an IV of fluid to flush him out and keep him from going into Ketoacidoses which is deadly.
After a weekend of highs, my mind couldn't help but to wander back to the Low Carb High Fat diet craze. I did my own research and found some recipes that I thought maybe we needed to try. I'm so glad we did.
Fathead Pizza I talked about on my Facebook page. It's a recipe I've seen several times and I've read nothing but good reviews from even the pickiest kids. Trey liked it, I liked it, Jordan liked it, Delanie wanted the real stuff (as we all did, but we all agree this didn't turn out as bad as some expected! It's a keeper!)
Fathead Recipe
1 1/2 cups Shredded Mozzerella Cheese (I used Colby/Jack as it's all I had)
2 T Cream Cheese (I used 1/3 less fat)
3/4 c Almond Flour ($11/pound at Wal-Mart in baking isle)
1 egg
1 tsp xanthan gum (optional and I did NOT use this)
Garlic powder to taste
Sea salt
Preheat oven to 425*. Put cheeses into a microwave safe bowl and heat for 1 minute 20 seconds. Stir cheeses until mixed. Add Almond Flour, Egg and xanthan gum. If too stringy, heat another 30 seconds. Wet hands and form into a ball on a baking sheet with parchment paper. Spread out with wet hands to your preference of thin-ness. Poke crust all over with a fork, bake for 8 minutes. Add your pizza toppings and cook another 4+ minutes until the crust is as crunchy as you prefer.
You can also make this into a bun substitute, just break up the dough into smaller balls. It's quick, easy and healthy if you're not looking at fat content.
The other recipe we made was called Fat Bombs. This is for the sweet tooth! I tried it, spit it out. Delanie is my Hershey lover and she ate it but said, "This is terrible but I didn't want to tell Trey" and Trey ate four pieces thinking it's delicious which is wonderful.
Fat Bombs
3/4 cup melted coconut oil (baking isle)
9 1/2 T Almond Butter (by peanut butter in Walmart)
60 drops of liquid Stevia (baking isle)
3 T cocoa
9 T melted salted butter
Mix all together. Pour into mini muffin mold, a pan, candy mold (or whatever you have!) and put into freezer. These melt fast when not cold!
One Fat Bomb is 14 grams of fat, 145 calories, 1.5 grams of protein and 1.6 carbs.
If any of you make these, let me know if you like it! I have a few more items on my list to try such as pancakes and biscuits. I will post details of those when we get it made.
To finish, I have had much peace this weekend after finding an amazing Facebook support group. Reading post after post with real parents having the same real issues, thoughts and questions I have has made me really look at things different and even give myself a small pat on the back knowing that while I cannot always produce perfect sugars for my child, I am doing what I can do to keep him healthy, eating better and teaching him to make the right food choices along the way. Yeah, there will be days he devours a Snickers much to my dismay, but don't we all splurge a little every now and then?! I also read an amazing piece on insulin that has changed my thinking drastically. I see a child getting 40 units of insulin a day and I shriek in fear that this "drug" will harm him. In fact, it's quite the opposite .. We all have insulin in us (well, unless you're diabetic). Your body MAKES it, it's a hormone, you NEED it to live. If you don't produce insulin, you go into Keto and you die. So how I view insulin is different and I'm thankful for that.
PS: my other highlight of the weekend was reading that a mom donates her "expired" insulin to her local vet. I contacted our Vet office and they indeed can use it!!! How awesome!! No more tossing away 150 units of insulin a month!!!!!!!!
Thursday, July 21, 2016
5 weeks
It's that time ... Back to School. While usually this is a bittersweet occasion for me, this year I'm feeling sick to my stomach about it. I always knew sending my baby girl to Kindergarten would be tough on me - and it was. I then said I would have no problems sending Trey to school - wrong.
In five weeks Trey will be attending all day, every day kindergarten. It's not sad because he's my baby boy, or even sad because I want to keep him home with me to help me with daycare (OK ... So maybe that's a little true), but I'm sending my chronically ill child to school and asking someone else to watch over him for 7 hours a day.
I've seen posts about mom's buying their children's school supplies and how 'difficult' that is. Let me tell you, I wish buying school supplies was all I had to worry about sending to school with my child.
As soon as we had Trey's diaganoses, we informed the school district. OMT did not have a school nurse on staff, but they do now. We spoke with the principal briefly about Trey coming to Kindergarten and he would need special requirements that we would talk more in depth with as the time got closer. The school does in fact have WIFI, so we will be able to connect his CGM to it allowing it to send me and Jordan his blood sugar numbers during the day.
Trey's medical team from Sioux Falls writes up a healthcare plan for the school to have. It has direct orders from his Endocrinoligst as a to how to care for him. Jordan and I will need to meet with the school and discuss with the teacher, nurse and principal how to do what needs to be done and what to look for in case of a high or a low sugar reading. We will have a Care Box in both the nurse's office as well as his classroom with extra medical supplies, snacks, juice boxes, sugar tablets and the (God forbid we need it) Glucagon kit. He will have to take extra water bottles and his own snacks in case his sugar is too high to have the classroom snack. He will have to take time out of his learning in order to get his sugar checked. When and where do they plan on doing this? He will need to have an insulin shot after his lunch - will he miss the recess? (Because that's not fair). If his sugar is too high or too low, he will loose the ability to concentrate. If his sugar is above 250 at PE time, he probably cannot partake in the actives as exercise above 250 can make you go ever higher, but would have to sit and watch the other kids
You see, when my child is in my care 24 hours a day, I know what to look for and how to react. I know what foods to try in an event of a high or a low. I don't know everything, I never will, but I'm turning my care over to a whole school full of students, teachers and staff and trusting them with my little guy. Trusting they will do their research and know what to look for in signs or what to do if he drops over during PE. If he starts to get shaking in Music, I hope he knows to tell the teacher or she can see it. In a classroom of 25 kindergartens, I know the teacher cannot focus on Trey. I don't expect her to. It's not her JOB to focus on one kid. But I hope it's always in the back of her mind and I hope as the year goes on, she too is able to know the signs.
There is a 504 Plan which is part of the American Disability Act which protects my child in school. It makes sure he is not left out of any activities because of his diabetes. I'm sure the school would never do such a thing, however, I will not wait to find out. We as parents have to be strong for our kids and fight for our kids. If I don't stand up now for Trey as he enters kindergarten, how will he ever learn to stand up for himself and have that voice? This is an agreement written up by the school and parents.
So 'back to school' isn't cool for me this year. I'm not ready for it. I want to keep my baby home where I can watch him and protect him. No one can take care of your baby like his/her mom can. It's going to be very hard for me, I will not lie. I will continuously wonder "did she check his sugar?" Or "is he going to eat cheese or can he have trail mix" at his snack.
5 weeks ..... 5 weeks to worry about it, pray about it, and then a whole new set of worry sets in .....
In five weeks Trey will be attending all day, every day kindergarten. It's not sad because he's my baby boy, or even sad because I want to keep him home with me to help me with daycare (OK ... So maybe that's a little true), but I'm sending my chronically ill child to school and asking someone else to watch over him for 7 hours a day.
I've seen posts about mom's buying their children's school supplies and how 'difficult' that is. Let me tell you, I wish buying school supplies was all I had to worry about sending to school with my child.
As soon as we had Trey's diaganoses, we informed the school district. OMT did not have a school nurse on staff, but they do now. We spoke with the principal briefly about Trey coming to Kindergarten and he would need special requirements that we would talk more in depth with as the time got closer. The school does in fact have WIFI, so we will be able to connect his CGM to it allowing it to send me and Jordan his blood sugar numbers during the day.
Trey's medical team from Sioux Falls writes up a healthcare plan for the school to have. It has direct orders from his Endocrinoligst as a to how to care for him. Jordan and I will need to meet with the school and discuss with the teacher, nurse and principal how to do what needs to be done and what to look for in case of a high or a low sugar reading. We will have a Care Box in both the nurse's office as well as his classroom with extra medical supplies, snacks, juice boxes, sugar tablets and the (God forbid we need it) Glucagon kit. He will have to take extra water bottles and his own snacks in case his sugar is too high to have the classroom snack. He will have to take time out of his learning in order to get his sugar checked. When and where do they plan on doing this? He will need to have an insulin shot after his lunch - will he miss the recess? (Because that's not fair). If his sugar is too high or too low, he will loose the ability to concentrate. If his sugar is above 250 at PE time, he probably cannot partake in the actives as exercise above 250 can make you go ever higher, but would have to sit and watch the other kids
You see, when my child is in my care 24 hours a day, I know what to look for and how to react. I know what foods to try in an event of a high or a low. I don't know everything, I never will, but I'm turning my care over to a whole school full of students, teachers and staff and trusting them with my little guy. Trusting they will do their research and know what to look for in signs or what to do if he drops over during PE. If he starts to get shaking in Music, I hope he knows to tell the teacher or she can see it. In a classroom of 25 kindergartens, I know the teacher cannot focus on Trey. I don't expect her to. It's not her JOB to focus on one kid. But I hope it's always in the back of her mind and I hope as the year goes on, she too is able to know the signs.
There is a 504 Plan which is part of the American Disability Act which protects my child in school. It makes sure he is not left out of any activities because of his diabetes. I'm sure the school would never do such a thing, however, I will not wait to find out. We as parents have to be strong for our kids and fight for our kids. If I don't stand up now for Trey as he enters kindergarten, how will he ever learn to stand up for himself and have that voice? This is an agreement written up by the school and parents.
So 'back to school' isn't cool for me this year. I'm not ready for it. I want to keep my baby home where I can watch him and protect him. No one can take care of your baby like his/her mom can. It's going to be very hard for me, I will not lie. I will continuously wonder "did she check his sugar?" Or "is he going to eat cheese or can he have trail mix" at his snack.
5 weeks ..... 5 weeks to worry about it, pray about it, and then a whole new set of worry sets in .....
Monday, July 18, 2016
How many Carbs?!
I've been short on sleep the past couple weeks. I have always been a person who gets too much on their mind and there comes a point where I can't even process it all. I had that moment.
I follow a blog on Facebook about a kid named River, who also has Type 1 Diabetes. He's an 8 year old boy, lives in Sioux Falls, sees the same Doctor as we do and has been a diabetic since age 5. His mom writes a raw story about their struggles and I admire her for not sugar coating it. It's important to know she doesn't do it for attention, she does it to raise awareness because if you do not have to deal with diabetes 24/7 - you don't know the struggles. A couple weeks ago his mom said she was tired of the roller coaster of high/low blood sugar levels and decided to cut his carb intake. I was intrigued! I, too, had cut Trey's carb intake a few weeks prior, so I wanted to see what she meant and how she cut back. What I found baffled me. I cut Trey's carbs to 20 per meal (except breakfast was lower). That 20 seemed to do really well for Trey, keeping his sugar where it should be. When we told his doctor and Jenny about this, they jumped all over me. NOT OK I was told. Kids need carbs to develop and be healthy! They wanted me to allow him to eat anything he wanted.
So as I read about River's good luck with this low carb, what I discovered was he ate 6 carbs for breakfast, 12 for lunch and 12 for supper. My eyes squinted and my brain really started to spin. 12 carbs is NOT much. I knew this wasn't the right option for Trey (at least not YET) although River's mom had a lot of support. A low carb/high fat diet was a great idea many people had said. I struggled with it and even though it wasn't my child, I lost sleep.
When I think about it, we have cut out so many carbs already. Bread slices (15 carbs) and buns (30 carbs) are few and far between; cereal (around 20 carbs for 3/4c) is not consumed for two quick examples. Baked goods, candy, even milk!
Trey used to eat fruit snacks like no one's business. It was nothing for him to sit down and have 3 bags for a snack (at 20g each!). I would even buy the "all fruit" ones thinking they were healthy. WRONG. We had glazed donuts every weekend for breakfast/snacks. Not anymore. He wanted cookies? Sure ... Here is 6 Oreo's and a glass of milk to dunk them in.
We've changed our habits.
When I take my child to the store to pick out his snacks, he now chooses beef sticks, cheese sticks, almonds, PowerAde Zero, occasiaional Cheeze-it's, cheese balls and fresh fruit along with broccoli.
The most amazing part for me is that he doesn't even TRY to sneak something in the cart. He doesn't beg or cry or plead with me to get Oreo's instead of Cheese-It's. He's learning to check the label of foods to see how many carbs there is. He knows it has to be under 20. I allow him to have bites of things he really wants, such as a candy bar. He got a York bar over 2 weeks ago and he's had one bite of it. It was enough to satisfy him, but not enough to raise his sugar drastically. Yesterday his great grandma gave him a large chocolate covered rice crispy bar and he knew he had to ask before he could open it or eat it. After taking his sugar, I allowed him to have 1/2 of the bar, for 15 carbs. He ate it like he was eating a little piece of Heaven. He never asked for the rest of it, never cried when I told him he could have half ... He ate what he could and was happy with that.
I don't know about you, but I personally find that remarkable for a five year old. It's hard to not feel sorry for him. I try not to let it show, but I shed tears over my little guy all the time. When I think of him going to school in a few weeks and the kids all having their snack together ... But my little guy whips out a piece of string cheese instead of a sugary yummy treat. Doesn't seem fair. When his class wins a popcorn and juice party. He can have a little popcorn and no juice. When his friend has a birthday party with Hawaiian Punch and Birthday Cake, he can probably have a little piece of cake (no frosting) and again, no juice.
Carbs are part of our every day discussion now ..... How many carbs is too many carbs?
Tuesday, July 5, 2016
16 Weeks
16 weeks. 16 weeks ago we were sitting at Avera McKennan Hospital in Sioux Falls waiting to be discharged to come home and resume our 'new' lives.
I was anxious and terrified. Three days prior my son was diaganosed with Type 1 Diabetes, an auto-immune disease. Two days spent at the hospital in Sioux Falls with information shoved down our throats and functioning on 4-5 hours of sleep each night and now you want to send me home with $500 of supplies to keep my kid alive?
Terrified.
16 weeks has felt like 5 years. Diabetes is no joke. Those commercials on TV about "take this pill to help you with your diabetes" are a (bleep) joke. They anger me. Type 1 diabetes and Type 2 diabetes are so totally different that I hate it when someone tries to compare the two. I had gestational diabetes with both my pregnancies and the only information that is relativity the same for T1 is watching your carbohydrate intake. THAT'S IT.
I have to prick my 5 year old sons finger at least six times a day. I have to change out his Continuous Glucose Montior (CGM) once a week. This is a device that is inserted into this stomach with a flexible needle, attached to it which checks his sugar level in the tissue below the skin. While the sugar level in the blood and the sugar level in the tissue are not always the same, it gives you a pretty good idea as to where the level is at without having a do a finger poke. I give my son 4 shots a day. You should see his stomach and his fingertips. Scared for life.
I've spent hours upon hours reading up on how to keep sugars low. I've read and researched the benefits of proteins and carbohydrates and have written out a list of good vs bad foods along with the carb counts. I've typed up a generic letter for the grandparents so when they are with Trey, they know what to do and what to look for. We've been in contact with his doctor regarding ketones in his urine. We have had several phone calls with his diabetes educator, Jenny, about changing his carb ratios per meal so we know how much insulin to give him.
A mother's job is to protect her children from harm. You hate it when your child gets the flu and you wish it was you puking your guts out instead of your poor, helpless, child. Stab him/her in the stomach four times a day. Squeeze blood from his/her finger six times a day. Watch the CGM go from 120 to over 300 in a matter of 30 minutes because you fed your child lunch. Tell your five year old kid "no, you can't have more Mac-n-cheese because you have had enough carbs" and see the tears form in their eyes.
Excuse my French but fuck you diabetes. FUCK YOU. You've taken my precious, innocent little boy and you've turned him into a SICK child who relies on needles to save his life.
You've latched onto my bank account because of the two types of insulin, needles, test strips, ketone strips, alcohol wipes, glucagon and CGM that he requires to keep him alive every single day. You've put him at risk for other auto-immune diseases such as Celiac Disease. Continuous high blood sugars could mean internal organ damage later in life. His kidneys and his eyes could fail him. He could lose feeling in his feet and legs. Hell, he could have legs amputated due to poor circulation caused by blood sugars. You've turned me into a freaked out mom who is constantly asking her 5 year old "What is your number? Did you eat anything? Do you feel ok?" You've turned my nights into sleepless nights full of nightmares and worry.
There is no doubt that my son has handled this much better than I have. "He will never know life without it" ... Shut up. "At least he is young." Are you kidding? He probably can't have the birthday treats at school, birthday cake at his best friends b-day party, the juice/punch at the party and let's not even talk about what alcohol can do to him when he starts trying that out. "He can grow out of it, right?" Get a clue.
What DOES make me happy is that there are finally people willing to spend some money to support the Juvenile Diabetes Research Foundation (JDRF) and we are well on our way to finding a CURE for diabetes. They have done some clinical trials for the artificial pancreas and are now starting trials on inserting clean beta insulin producing cells back into the diabetic person. So much hope.
I've realized the last 16 weeks so many things. 1) I have one hell of an amazing son who is so much stronger than he knows 2) I did not miss the sleepless nights back when he was an infant 3) Diabetes doesn't make any sense. What happens today isn't what happens tomorrow 4) There isn't enough money in the world 5) Medical insurance is worth every penny 6) My math skills still suck 7) People are very uneducated about Type 1 diabetes 8) A juice box can save my kids life when his sugar is too low 9) I, in fact, can stick my son with a needle 10) I f'n HATE diabetes
I was anxious and terrified. Three days prior my son was diaganosed with Type 1 Diabetes, an auto-immune disease. Two days spent at the hospital in Sioux Falls with information shoved down our throats and functioning on 4-5 hours of sleep each night and now you want to send me home with $500 of supplies to keep my kid alive?
Terrified.
16 weeks has felt like 5 years. Diabetes is no joke. Those commercials on TV about "take this pill to help you with your diabetes" are a (bleep) joke. They anger me. Type 1 diabetes and Type 2 diabetes are so totally different that I hate it when someone tries to compare the two. I had gestational diabetes with both my pregnancies and the only information that is relativity the same for T1 is watching your carbohydrate intake. THAT'S IT.
I have to prick my 5 year old sons finger at least six times a day. I have to change out his Continuous Glucose Montior (CGM) once a week. This is a device that is inserted into this stomach with a flexible needle, attached to it which checks his sugar level in the tissue below the skin. While the sugar level in the blood and the sugar level in the tissue are not always the same, it gives you a pretty good idea as to where the level is at without having a do a finger poke. I give my son 4 shots a day. You should see his stomach and his fingertips. Scared for life.
I've spent hours upon hours reading up on how to keep sugars low. I've read and researched the benefits of proteins and carbohydrates and have written out a list of good vs bad foods along with the carb counts. I've typed up a generic letter for the grandparents so when they are with Trey, they know what to do and what to look for. We've been in contact with his doctor regarding ketones in his urine. We have had several phone calls with his diabetes educator, Jenny, about changing his carb ratios per meal so we know how much insulin to give him.
A mother's job is to protect her children from harm. You hate it when your child gets the flu and you wish it was you puking your guts out instead of your poor, helpless, child. Stab him/her in the stomach four times a day. Squeeze blood from his/her finger six times a day. Watch the CGM go from 120 to over 300 in a matter of 30 minutes because you fed your child lunch. Tell your five year old kid "no, you can't have more Mac-n-cheese because you have had enough carbs" and see the tears form in their eyes.
Excuse my French but fuck you diabetes. FUCK YOU. You've taken my precious, innocent little boy and you've turned him into a SICK child who relies on needles to save his life.
You've latched onto my bank account because of the two types of insulin, needles, test strips, ketone strips, alcohol wipes, glucagon and CGM that he requires to keep him alive every single day. You've put him at risk for other auto-immune diseases such as Celiac Disease. Continuous high blood sugars could mean internal organ damage later in life. His kidneys and his eyes could fail him. He could lose feeling in his feet and legs. Hell, he could have legs amputated due to poor circulation caused by blood sugars. You've turned me into a freaked out mom who is constantly asking her 5 year old "What is your number? Did you eat anything? Do you feel ok?" You've turned my nights into sleepless nights full of nightmares and worry.
There is no doubt that my son has handled this much better than I have. "He will never know life without it" ... Shut up. "At least he is young." Are you kidding? He probably can't have the birthday treats at school, birthday cake at his best friends b-day party, the juice/punch at the party and let's not even talk about what alcohol can do to him when he starts trying that out. "He can grow out of it, right?" Get a clue.
What DOES make me happy is that there are finally people willing to spend some money to support the Juvenile Diabetes Research Foundation (JDRF) and we are well on our way to finding a CURE for diabetes. They have done some clinical trials for the artificial pancreas and are now starting trials on inserting clean beta insulin producing cells back into the diabetic person. So much hope.
I've realized the last 16 weeks so many things. 1) I have one hell of an amazing son who is so much stronger than he knows 2) I did not miss the sleepless nights back when he was an infant 3) Diabetes doesn't make any sense. What happens today isn't what happens tomorrow 4) There isn't enough money in the world 5) Medical insurance is worth every penny 6) My math skills still suck 7) People are very uneducated about Type 1 diabetes 8) A juice box can save my kids life when his sugar is too low 9) I, in fact, can stick my son with a needle 10) I f'n HATE diabetes
Did you know?
* You cannot outgrow Type 1 Diabetes (T1D)
* Each year more than 15,000 children AND 15,000 adults in the US find out they have T1D. That's about 40 kids and 40 adults each day.
* Researchers do not know what causes T1D, although they do have a few clues such as your genetic make-up.
* T1D is far less common than type 2. About 90% of people with diabetes have type 2.
* Many famous people have T1D including: Jay Cutler (former Bears QB), Ron Santo (Chicago Cubs player), Halle Berry (although she claims she cured herself), Mary Tyler Moore, Nick Jonas and Max Domi (NHL player) just to name a few.
* There is no cure for T1D
* Kidney failure and heart disease are common illnesses associated with T1D along with retinopathy.
* Diabetes is more common in white people than in African-American people.
My not-so-healthy son
On March 14th I heard words I didn't want to hear "Your son has Type 1 Diabetes". To say I was surprised isn't true, I had an inkling he had it, which is why I took him to the doctor and asked him to be tested for it. To say our lives are forever changed is 100% accurate. What a whirlwind of 16 weeks we've had. I'm going to spare you details at this time, but with all these changes happening in my life, I've decided I needed to start up a blog again.
I'll be posting about diabetes, because quite frankly, diabetes has become a 24/7 job. While it's a treatable disease, there is no cure, and never before did I really care or think much about it, but now that I'm living the nightmare and seeing my son get needles stuck in his body 12ish time a day ... I realize how ignorant I was. I will become an expert on this fucking disease real quick. It's my mission to keep my son as healthy as I can and allow him to continue to follow his dreams of playing hockey at a high level. I'll be the mom on the bench checking blood sugar levels and handing him a snack in the middle of the period to keep his sugar level up. I'll be THAT mom. The helicopter mom. The mom who constantly worries about her son's blood sugar level. Who will not sleep a wink the first time he stays overnight away from home. The mom who will constantly ask him if he ate, what he ate, if he took his shot, how he feels, etc. As if we didn't already have a close bond ... This has really made it closer yet.
*********************************************************************************
I ran across a blog a mother wrote about her T1D daughter who was diaganosed at age three. She nailed it man ... Everything I've thought and felt and have wanted to say - she said it. I don't want to copy her post, but I feel the need to share what I can relate to.
I hate the question "How's Trey doing?" While I know people mean well, I don't know how to answer it. Typically I say "Good", but I guess I don't know if that is the honest answer. While it seems like such a simple question, there isn't a simple answer. The first few times people asked I would shrug and say "I don't know I guess" and I got looks of horror or confusion from people, so now I just say "good" and that seems to pacify everyone.
If you don't live with diabetes 24/7, then you don't know. You can't know, and for me to try to explain it to you is about like giving a cat a bath. But I have to try. I have to try to give everyone I know as much information as I can and make it as simple as I can - even though there is NOTHING simple about T1D.
T1D is an autoimmune disease. It isn't caused by eating too much sugar, it's not because of my Gestational Diabetes while pregnant with him and there is no cure for it. Insulin is not a cure. (More on that later).
I need you to know ...
- there is no "good" or "bad" kind of diabetes
- you can't take your medicine and forget about it. It's not the flu that you deal with for 24 hours and then it's over. It's not a week long cold and then you're better.
- I think about diabetes 24/7. I honestly forgot to pick up my daughter from her Papa's house one day because my mind was so cloudy from lack of sleep, blood sugar numbers, checking the clock to see when the next blood sugar check was supposed to be, etc.
- diabetes is not something that is black and white. It's gray, so very gray. It truly doesn't make any sense as to why a meal today raises the blood sugar level or why tomorrow that very same meal drops the blood sugar number. Diabetes is changing, constantly.
- insulin shots are not a cure. To calculate insulin is not a+b=c. It's very complicated and in fact, can be deadly. Yes, we all die sometime from something, but I don't mean he will die from diabetes when he's 70, he can die from it TODAY if we don't take care of him the best we can.
- while we haven't ran into this yet, having an illness such as stomach flu or common cold will wreak havoc on blood sugar numbers. Trey can very easily shoot very high or drop very low in just mere hours and it can land him in the hospital or worse yet, kill him.
- Trey will have an insulin pump ... eventually. That was one of the fist questions everyone asked, and neither J or myself really had even gotten that far in our conversations with the specialists in SF. There is so much more to learn before a pump is discussed. What everyone NEEDS to know about the pump is that while it will avoid the insulin shots, it's still not a cure. You still have to tell the pump how much insulin to give which means you still have to figure our the proper ratios and all that jazz. Convenient in some aspects, yes ... But it doesn't allow mom to sleep any better at night or stop the 8 finger pokes a day checking blood sugar levels. And since it's a machine, it can quit anytime. We have to know how to give insulin manually before doctor will implant a pump.
- everything Trey does affects his sugar levels. The foods he eats, the exercise he gets, the stress he's under, the illness brewing inside his body, nerves, excitement, hormones.
- Trey can eat anything he wants. Yes, even birthday cake or suckers.
- sugar-free isn't always better.
- his blood sugar must be checked BEFORE he eats. Not after, not even after a few bites. BEFORE
- trying to be the perfect pancreas for him is impossible
- I don't want you to pity him or our family. I want you to FEEL for us and help find a cure with your empathy.
- having diabetes cost A LOT of money.
- I am exhausted, mentally. I am crabby. I feel as if I am going through the stages of grief.
- I too was once ignorant to how severe Type 1 Diabetes is. Educate yourself and educate others.
- this has been a life changing event. Nothing was once as easy as it was. Even a trip to the store must be planned around a blood sugar check or meal time.
- people are going to think I am very over protective and that's fine. Until YOUR child is diaganosed with a deadly disease, you can think whatever you want. When their life lies in your hands and your calculations and your medical knowledge ... Then judge me.
- PLEASE do not compare T1D to Type 2. It's not the same. Do your research. It infuriates me when people say it's the same.
- I said it myself to try to make myself feel better, but since I've found it to be annoying when someone says, "At least he got it young so he won't know life before it." Yes, because every 4 year old should have to go through what he's gone through. It's not 'good', it's sad.
- I'm doing everything I possibly can to the very best of my ability. I have given this disease my full attention. I've lost weight, lost sleep, lost my fricking mind because of this. I've cried enough tears to fill Amsden Lake. I've felt guilty that I can't take away this disease for him and that I didn't catch it even sooner than I did. I hate poking his fingers to draw blood. I hate giving his insulin shots to him. I hate having to tell him, "No, you can't eat that right now. You have to wait 30 minutes." I hate seeing his sad face. I hate that he has to live with this forever and that there is no medical reason why he has it. I hate that there is no cure for it. I hate it.
- I do know this: having diabetes makes you strong * things do get better * there will be a cure one day - I just hope my son is alive when that cure comes * it always hurts * he will do great things in his life despite his illness * I will never give up or give in - I will FIGHT for my son every day * He is a fighter and more brave than he should have to be * I will educate my loved ones on this disease.
I realize this was long, but I had to do it. I maybe lost you after the third paragraph and I hope that our family means enough to you that someday you will finish reading this post because it's very important for you to understand what our family goes through and to educate yourself the best you can for Trey's sake.
I'll be posting about diabetes, because quite frankly, diabetes has become a 24/7 job. While it's a treatable disease, there is no cure, and never before did I really care or think much about it, but now that I'm living the nightmare and seeing my son get needles stuck in his body 12ish time a day ... I realize how ignorant I was. I will become an expert on this fucking disease real quick. It's my mission to keep my son as healthy as I can and allow him to continue to follow his dreams of playing hockey at a high level. I'll be the mom on the bench checking blood sugar levels and handing him a snack in the middle of the period to keep his sugar level up. I'll be THAT mom. The helicopter mom. The mom who constantly worries about her son's blood sugar level. Who will not sleep a wink the first time he stays overnight away from home. The mom who will constantly ask him if he ate, what he ate, if he took his shot, how he feels, etc. As if we didn't already have a close bond ... This has really made it closer yet.
*********************************************************************************
I ran across a blog a mother wrote about her T1D daughter who was diaganosed at age three. She nailed it man ... Everything I've thought and felt and have wanted to say - she said it. I don't want to copy her post, but I feel the need to share what I can relate to.
I hate the question "How's Trey doing?" While I know people mean well, I don't know how to answer it. Typically I say "Good", but I guess I don't know if that is the honest answer. While it seems like such a simple question, there isn't a simple answer. The first few times people asked I would shrug and say "I don't know I guess" and I got looks of horror or confusion from people, so now I just say "good" and that seems to pacify everyone.
If you don't live with diabetes 24/7, then you don't know. You can't know, and for me to try to explain it to you is about like giving a cat a bath. But I have to try. I have to try to give everyone I know as much information as I can and make it as simple as I can - even though there is NOTHING simple about T1D.
T1D is an autoimmune disease. It isn't caused by eating too much sugar, it's not because of my Gestational Diabetes while pregnant with him and there is no cure for it. Insulin is not a cure. (More on that later).
I need you to know ...
- there is no "good" or "bad" kind of diabetes
- you can't take your medicine and forget about it. It's not the flu that you deal with for 24 hours and then it's over. It's not a week long cold and then you're better.
- I think about diabetes 24/7. I honestly forgot to pick up my daughter from her Papa's house one day because my mind was so cloudy from lack of sleep, blood sugar numbers, checking the clock to see when the next blood sugar check was supposed to be, etc.
- diabetes is not something that is black and white. It's gray, so very gray. It truly doesn't make any sense as to why a meal today raises the blood sugar level or why tomorrow that very same meal drops the blood sugar number. Diabetes is changing, constantly.
- insulin shots are not a cure. To calculate insulin is not a+b=c. It's very complicated and in fact, can be deadly. Yes, we all die sometime from something, but I don't mean he will die from diabetes when he's 70, he can die from it TODAY if we don't take care of him the best we can.
- while we haven't ran into this yet, having an illness such as stomach flu or common cold will wreak havoc on blood sugar numbers. Trey can very easily shoot very high or drop very low in just mere hours and it can land him in the hospital or worse yet, kill him.
- Trey will have an insulin pump ... eventually. That was one of the fist questions everyone asked, and neither J or myself really had even gotten that far in our conversations with the specialists in SF. There is so much more to learn before a pump is discussed. What everyone NEEDS to know about the pump is that while it will avoid the insulin shots, it's still not a cure. You still have to tell the pump how much insulin to give which means you still have to figure our the proper ratios and all that jazz. Convenient in some aspects, yes ... But it doesn't allow mom to sleep any better at night or stop the 8 finger pokes a day checking blood sugar levels. And since it's a machine, it can quit anytime. We have to know how to give insulin manually before doctor will implant a pump.
- everything Trey does affects his sugar levels. The foods he eats, the exercise he gets, the stress he's under, the illness brewing inside his body, nerves, excitement, hormones.
- Trey can eat anything he wants. Yes, even birthday cake or suckers.
- sugar-free isn't always better.
- his blood sugar must be checked BEFORE he eats. Not after, not even after a few bites. BEFORE
- trying to be the perfect pancreas for him is impossible
- I don't want you to pity him or our family. I want you to FEEL for us and help find a cure with your empathy.
- having diabetes cost A LOT of money.
- I am exhausted, mentally. I am crabby. I feel as if I am going through the stages of grief.
- I too was once ignorant to how severe Type 1 Diabetes is. Educate yourself and educate others.
- this has been a life changing event. Nothing was once as easy as it was. Even a trip to the store must be planned around a blood sugar check or meal time.
- people are going to think I am very over protective and that's fine. Until YOUR child is diaganosed with a deadly disease, you can think whatever you want. When their life lies in your hands and your calculations and your medical knowledge ... Then judge me.
- PLEASE do not compare T1D to Type 2. It's not the same. Do your research. It infuriates me when people say it's the same.
- I said it myself to try to make myself feel better, but since I've found it to be annoying when someone says, "At least he got it young so he won't know life before it." Yes, because every 4 year old should have to go through what he's gone through. It's not 'good', it's sad.
- I'm doing everything I possibly can to the very best of my ability. I have given this disease my full attention. I've lost weight, lost sleep, lost my fricking mind because of this. I've cried enough tears to fill Amsden Lake. I've felt guilty that I can't take away this disease for him and that I didn't catch it even sooner than I did. I hate poking his fingers to draw blood. I hate giving his insulin shots to him. I hate having to tell him, "No, you can't eat that right now. You have to wait 30 minutes." I hate seeing his sad face. I hate that he has to live with this forever and that there is no medical reason why he has it. I hate that there is no cure for it. I hate it.
- I do know this: having diabetes makes you strong * things do get better * there will be a cure one day - I just hope my son is alive when that cure comes * it always hurts * he will do great things in his life despite his illness * I will never give up or give in - I will FIGHT for my son every day * He is a fighter and more brave than he should have to be * I will educate my loved ones on this disease.
I realize this was long, but I had to do it. I maybe lost you after the third paragraph and I hope that our family means enough to you that someday you will finish reading this post because it's very important for you to understand what our family goes through and to educate yourself the best you can for Trey's sake.
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