After taking an unintentional month hiatus from blogging, I am back!
It has been pretty much the norm around here this past month. Ups and Downs and a disappointing A1C from our endo visit last month. It only went up .2 due to post surgery high blood sugars, but it is still frustrating considering how hard we work. Our endo didn't mind the increase at all, I just tend to be harder on myself because I know just what is at stake.......Joseph's future health and LIFE!
We are creeping up on Joseph's 2nd Diaversary (anniversary of his diagnosis) and I can't help but feel sadness thinking of past Christmas and how differently we viewed the world. The other day we pulled up old video footage of Joseph and it broke my heart to know that he would never be that careFREE kid that he once used to be, now at the age of 5 he has more responsibility then most twice his age. Take your meter, grab your CGM, we need to check your finger, come here so I can tape your pump, let me weigh that banana before you eat it etc. etc. Don't get me wrong he is still a happy kid, things are just different.
The other night we were sitting at dinner and Joseph asked me if he could take off his medical alert bracelet. I of course told him "NO" and then explained that it was very important for him to wear it in case of an emergency so the paramedics and doctors would know that he needed special medical treatment. Then he said the words I have been dreading " Mom, I don't want to have Type 1 Diabetes anymore" my heart sank, a lump formed in my throat and I held back tears. I responded by explaining to him that we were working hard with JDRF to raise the money for a cure so that he didn't have Type 1 Diabetes anymore. He just looked at me and said " I just want diabetes to be over" I just looked at him and said " I know buddy, I know, me too!" Then I tried to hold myself together because had we not been in a public place, I would have excused myself and went into a room and cried.
I want diabetes to be over too, I want my son to be free. I don't want this life for him or our family. Why did this happen? Why couldn't it have been something that could be fixed, cured or taken out? Why does he have to live the rest of his life with this burden? Why do I have to put all of our hope, prayers and faith into the bucket labeled "unknown"?
This is the time of year to be grateful and I am don't get me wrong. We are very blessed in our life but I am not grateful for Type 1 Diabetes...........I want it to be over!
-until next time
Monday, December 22, 2014
Friday, November 7, 2014
Life after surgery
Sorry for the delay in an update it has been a little crazy around here since Joseph's surgery on Wednesday morning.
Surgery went well despite a few hiccups with Nightscout and Dexcom not cooperating during the surgery and leaving us completely in the dark. Joseph did drop a little low during his surgery and they had to give him a bag of Dextrose to raise his blood sugar. The waking from anesthesia was pretty typical for a young child, he was pretty hysterical and out of it but once it wore off he was fine, no nausea and no vomiting YAY!
Joseph shocked us all when he started requesting to eat right away! This was the main reason that we decided to have him admitted for a night of observation. This boy is beyond tough and truly inspires us with his continued strength and resilience despite what life is throwing at him.
Joseph's recovery is going well and pretty smoothly, with the exception of his blood sugar. His pain medication with both a sugar and alcohol content, plus a healing distressed body are causing some seriously stubborn blood sugars!! Joseph's normal daily insulin intake ranges from 15-20 units and yesterday we gave him 33 units and still couldn't keep him below 200! We have increased basal, changed his correction factor and are giving bolus after bolus and we are still struggling. Diabetes has a mind of it's own and no matter how hard we work, we are never in control of the outcome. We are continuing to fight to bring him back into a more consistent range, but right now it just feels like a losing battle. You feel terrible as a parent that in addition to not feeling well because of surgery that now you are causing him to not feel well because you can't manage to bring down high blood sugars!
This disease is ruthless and frustrating, you can do everything you are supposed to do and it still isn't enough! You have no choice but to keep pushing through and fighting. We won't give up and we will get those numbers back where they belong, no matter what it takes.
Keep saying your prayers and keeping Joseph in your thoughts for a speedy and healthy recovery!
-until next time
Surgery went well despite a few hiccups with Nightscout and Dexcom not cooperating during the surgery and leaving us completely in the dark. Joseph did drop a little low during his surgery and they had to give him a bag of Dextrose to raise his blood sugar. The waking from anesthesia was pretty typical for a young child, he was pretty hysterical and out of it but once it wore off he was fine, no nausea and no vomiting YAY!
Joseph shocked us all when he started requesting to eat right away! This was the main reason that we decided to have him admitted for a night of observation. This boy is beyond tough and truly inspires us with his continued strength and resilience despite what life is throwing at him.
Joseph's recovery is going well and pretty smoothly, with the exception of his blood sugar. His pain medication with both a sugar and alcohol content, plus a healing distressed body are causing some seriously stubborn blood sugars!! Joseph's normal daily insulin intake ranges from 15-20 units and yesterday we gave him 33 units and still couldn't keep him below 200! We have increased basal, changed his correction factor and are giving bolus after bolus and we are still struggling. Diabetes has a mind of it's own and no matter how hard we work, we are never in control of the outcome. We are continuing to fight to bring him back into a more consistent range, but right now it just feels like a losing battle. You feel terrible as a parent that in addition to not feeling well because of surgery that now you are causing him to not feel well because you can't manage to bring down high blood sugars!
This disease is ruthless and frustrating, you can do everything you are supposed to do and it still isn't enough! You have no choice but to keep pushing through and fighting. We won't give up and we will get those numbers back where they belong, no matter what it takes.
Keep saying your prayers and keeping Joseph in your thoughts for a speedy and healthy recovery!
-until next time
Monday, November 3, 2014
Surgery is Approaching
We are two days away from Joseph's surgery to remove his tonsils and panic and fear have started to creep into my mind.
As I mentioned in my previous post This is not routine we are having Joseph's surgery at the hospital where he was treated after his Type 1 Diabetes diagnosis. We are erring on the side of caution should he have any complications due to anesthesia or the refusal to eat or drink after surgery.
Joseph has never been put under anesthesia so we do not know how his blood sugar will react and even if it reacts well we have the hurdle of getting him to eat and drink post surgery to keep his blood sugars "controlled".
Just today the decision was made between Joseph's surgeon and his Endocrinologist to go ahead and plan to admit Joseph for at least one night post surgery to keep a close eye on his recovery and stability. This helps to put my mind at ease knowing that they are taking surgery and Type 1 Diabetes seriously.
If we were to have his surgery at an outpatient clinic with people who weren't familiar with the disease or it's complications then we could be in for a world of trouble. If Joseph comes out of surgery normally and is sent home like a patient normally is and he begins refusing to eat or drink then we have no way to raise a low blood sugar if the need arises and that can lead to a life threatening situation very quickly. If he is admitted into the hospital then they can help control his blood sugar with IV treatments and make sure that his body is staying hydrated if needed.
This is not an ideal or easy situation but preparing for the worst case scenario is what we have to do when life involves Type 1 Diabetes. We never know what diabetes is going to do next, but if we try our best to stay one step ahead, then we can try to maintain the upper hand and prevent the worst from happening.
Please keep Joseph in your prayers as Wednesday approaches and I will be sure to update how his surgery went once I know any information.
Thank You!
-until next time
As I mentioned in my previous post This is not routine we are having Joseph's surgery at the hospital where he was treated after his Type 1 Diabetes diagnosis. We are erring on the side of caution should he have any complications due to anesthesia or the refusal to eat or drink after surgery.
Joseph has never been put under anesthesia so we do not know how his blood sugar will react and even if it reacts well we have the hurdle of getting him to eat and drink post surgery to keep his blood sugars "controlled".
Just today the decision was made between Joseph's surgeon and his Endocrinologist to go ahead and plan to admit Joseph for at least one night post surgery to keep a close eye on his recovery and stability. This helps to put my mind at ease knowing that they are taking surgery and Type 1 Diabetes seriously.
If we were to have his surgery at an outpatient clinic with people who weren't familiar with the disease or it's complications then we could be in for a world of trouble. If Joseph comes out of surgery normally and is sent home like a patient normally is and he begins refusing to eat or drink then we have no way to raise a low blood sugar if the need arises and that can lead to a life threatening situation very quickly. If he is admitted into the hospital then they can help control his blood sugar with IV treatments and make sure that his body is staying hydrated if needed.
This is not an ideal or easy situation but preparing for the worst case scenario is what we have to do when life involves Type 1 Diabetes. We never know what diabetes is going to do next, but if we try our best to stay one step ahead, then we can try to maintain the upper hand and prevent the worst from happening.
Please keep Joseph in your prayers as Wednesday approaches and I will be sure to update how his surgery went once I know any information.
Thank You!
-until next time
Thursday, October 30, 2014
Phase 1
Well, it happened.....I dyed my hair BLUE, well blue highlights that is ;)
I modified my Phase 1 goal and hit $350 which isn't too shabby of a start considering November hasn't even started yet!
If you want to support my fundraising efforts then you can use the following link http://www.gofundme.com/aCUREforjoseph
If you'd like to join in the BLUE hair fun, please join the Facebook page or use the hashtag #goBLUEforT1D in your photos on your social media accounts!
https://www.facebook.com/GoBLUEforT1D
-until next time
I modified my Phase 1 goal and hit $350 which isn't too shabby of a start considering November hasn't even started yet!
If you want to support my fundraising efforts then you can use the following link http://www.gofundme.com/aCUREforjoseph
If you'd like to join in the BLUE hair fun, please join the Facebook page or use the hashtag #goBLUEforT1D in your photos on your social media accounts!
https://www.facebook.com/GoBLUEforT1D
-until next time
Tuesday, October 28, 2014
Halloween
Halloween is only two days away and I have already been asked a million times if I let Joseph participate in the holiday. I feel like looking at them and saying "Why the hell wouldn't I?" but rather, I just smile and say "Yes, of course. He gets to participate the same as if he were not diabetic."
My child never over indulged in candy prior to his diagnosis, so being more cautious about how much candy he actually eats is not much of a change for him and the same goes for our non-diabetic child. They are both are subject to the same treatment, diabetes is never the reason to saying NO in this house, if it is the underlying reason, then both children are told NO and another reason is explained to them.
This is also not a holiday to offer a diabetic child "sugar free" candy. These types of candies still have carbohydrates and still require insulin, so just give them the same candy that you would give any other child (unless they have specific dietary needs of course).
If you are new to being a D-Parent, don't stress yourself out thinking that your d-child has to miss out on being a child and enjoying Halloween. Here is how we handle Trick or Treating.
Once we return home each child gets to choose two pieces of candy to eat and then their buckets get put away. For the following few days they are allowed two pieces with lunch and dinner. I strategically sort the candy for the good "low" treats and put them aside and the remainder of the candy is shipped off to work with my husband. However, this year we are going to take the remaining candy to the dentist office and they get to choose a prize and then I will take them to the store and they can pick out a new toy. No child benefits from a ton of consumed candy and my children are never deprived from treats, so they don't even miss out. Just look at this as an opportunity to start a new fun tradition and your child won't even know the difference or miss out on any of the Halloween fun.
I hope that you all have a safe and fun Halloween!
-until next time!
My child never over indulged in candy prior to his diagnosis, so being more cautious about how much candy he actually eats is not much of a change for him and the same goes for our non-diabetic child. They are both are subject to the same treatment, diabetes is never the reason to saying NO in this house, if it is the underlying reason, then both children are told NO and another reason is explained to them.
This is also not a holiday to offer a diabetic child "sugar free" candy. These types of candies still have carbohydrates and still require insulin, so just give them the same candy that you would give any other child (unless they have specific dietary needs of course).
If you are new to being a D-Parent, don't stress yourself out thinking that your d-child has to miss out on being a child and enjoying Halloween. Here is how we handle Trick or Treating.
Once we return home each child gets to choose two pieces of candy to eat and then their buckets get put away. For the following few days they are allowed two pieces with lunch and dinner. I strategically sort the candy for the good "low" treats and put them aside and the remainder of the candy is shipped off to work with my husband. However, this year we are going to take the remaining candy to the dentist office and they get to choose a prize and then I will take them to the store and they can pick out a new toy. No child benefits from a ton of consumed candy and my children are never deprived from treats, so they don't even miss out. Just look at this as an opportunity to start a new fun tradition and your child won't even know the difference or miss out on any of the Halloween fun.
I hope that you all have a safe and fun Halloween!
-until next time!
Friday, October 24, 2014
I am going BLUE
I have decided to start a fundraising effort in which I will trade the color of my hair for generous donations.....yep, I am dyeing my hair BLUE!
I have chosen different stages of BLUE for my hair based upon the donations that I receive. These are a few examples that I have pulled from Pinterest. I have set the goals high because going BLUE for a blonde is no easy task, and not something that I will be able to remove very easily. However, it is worth every BLUE day, if it means that I am raising money to help fund a CURE for my son!
I have chosen different stages of BLUE for my hair based upon the donations that I receive. These are a few examples that I have pulled from Pinterest. I have set the goals high because going BLUE for a blonde is no easy task, and not something that I will be able to remove very easily. However, it is worth every BLUE day, if it means that I am raising money to help fund a CURE for my son!
If you'd like to donate towards my fundraising goals then you can follow this link
every single penny raised will be donated towards a CURE for Type 1 Diabetes!
I have also started a Facebook page where people are joining me in dyeing their hair BLUE and raising funding and awareness for this November, please "like" the page and share with your family and friends. Let's make this the best BLUEvember yet!
Thank you for your support and encouragement and I can't wait to see all of the BLUE hair, this November :)
-until next time
Tuesday, October 21, 2014
Could this be the answer??
Joseph had Coxsackievirus A
(Hand, Foot, and Mouth Disease)
7 months prior to his diagnosis of
Type 1 Diabetes!
Study taken from Science Daily story sourced from Arden's Day
Children who have had enterovirus infection are around 50 percent more likely to have type 1 diabetes
Date:
October 17, 2014
Source:
Diabetologia
Summary:
Children who have been infected with enterovirus are 48 percent more likely to have developed type 1 diabetes, a study shows. "Type 1 diabetes is considered to be caused by complex interaction between genetic susceptibility, the immune system, and environmental factors," say the authors. "Though the cue for genetic predisposition has been elucidated, evidence also points to involvement of enterovirus (EV) infection, including viruses such as poliovirus, Coxsackievirus A, Coxsackievirus B, and echovirus."
A new study published in Diabetologia (the journal of the European Association for the Study of Diabetes) shows that children who have been infected with enterovirus are 48% more likely to have developed type 1 diabetes. The study is by Dr Tsai Chung-Li, China Medical University, Taiwan, and colleagues.
"Type 1 diabetes is considered to be caused by complex interaction between genetic susceptibility, the immune system, and environmental factors," say the authors. "Though the cue for genetic predisposition has been elucidated, evidence also points to involvement of enterovirus (EV) infection, including viruses such as poliovirus, Coxsackievirus A, Coxsackievirus B, and echovirus."
To investigate the link between EV infection and subsequent type 1 diabetes, the researchers used nationwide population-based data from Taiwan's national health insurance system. They looked at type 1 diabetes incidence in children aged up to 18 years with or without diagnosis of EV infection during 2000-2008.
Overall incidence of type 1 diabetes was higher in the EV-infected children than in the non-EV infected group (5.73 vs. 3.89 per 100,000 people per year, showing a 48% increased incidence rate in EV-infected versus non-EV-infected children). Hazard ratios of type 1 diabetes increased with age at diagnosis of EV infection, with a more than doubling of the risk of type 1 diabetes (2.18 times increased risk) for children aged over 10 years at entry. No relationship of allergic rhinitis or bronchial asthma to type 1 diabetes was found.
The authors point out that despite countries such as Finland and Sweden having the highest incidence of type 1 diabetes worldwide, they are thought to have low background rates of enterovirus infection, suggesting that genetic factors are a large component of the high type 1 diabetes rates in those countries. But they add: "Regions such as Africa, Asia, South America have a low but increasing incidence of type 1 diabetes and high prevalence of enterovirus infection; environmental factors like enterovirus infection may play a vital role in increasing incidence in these regions."
They add: "Taiwan has relatively low type 1 diabetes incidence; we believe that the marked escalation of the said incidence in recent decades can be largely attributed to the highly endemic spread of enterovirus infection in Taiwanese children, given that there has been little gene flow and genetic drift in such a short period."
They conclude: "This nationwide retrospective cohort study found a positive correlation of type 1 diabetes with EV infection. Our results suggest that preventive strategies, such as an effective vaccine against EV infection, may lessen the incidence of type 1 diabetes in Taiwan."
To investigate the link between EV infection and subsequent type 1 diabetes, the researchers used nationwide population-based data from Taiwan's national health insurance system. They looked at type 1 diabetes incidence in children aged up to 18 years with or without diagnosis of EV infection during 2000-2008.
Overall incidence of type 1 diabetes was higher in the EV-infected children than in the non-EV infected group (5.73 vs. 3.89 per 100,000 people per year, showing a 48% increased incidence rate in EV-infected versus non-EV-infected children). Hazard ratios of type 1 diabetes increased with age at diagnosis of EV infection, with a more than doubling of the risk of type 1 diabetes (2.18 times increased risk) for children aged over 10 years at entry. No relationship of allergic rhinitis or bronchial asthma to type 1 diabetes was found.
The authors point out that despite countries such as Finland and Sweden having the highest incidence of type 1 diabetes worldwide, they are thought to have low background rates of enterovirus infection, suggesting that genetic factors are a large component of the high type 1 diabetes rates in those countries. But they add: "Regions such as Africa, Asia, South America have a low but increasing incidence of type 1 diabetes and high prevalence of enterovirus infection; environmental factors like enterovirus infection may play a vital role in increasing incidence in these regions."
They add: "Taiwan has relatively low type 1 diabetes incidence; we believe that the marked escalation of the said incidence in recent decades can be largely attributed to the highly endemic spread of enterovirus infection in Taiwanese children, given that there has been little gene flow and genetic drift in such a short period."
They conclude: "This nationwide retrospective cohort study found a positive correlation of type 1 diabetes with EV infection. Our results suggest that preventive strategies, such as an effective vaccine against EV infection, may lessen the incidence of type 1 diabetes in Taiwan."
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