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!?
Thursday, September 29, 2016
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.
........
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