I saw this on a friend's wall on facebook last night (thanks Marte) and it really spoke to me as a D-Mom and as a mom in general. I hope it speaks to you too.
Tuesday, October 11, 2011
Sunday, October 2, 2011
Feeling Lucky
Last night we went to the 3rd annual Evening 'Round the Campfire. It is the big fundraiser for Camp Conrad-Chinnock. If you haven't read my posts about camp, you can read more about it here and see our pictures here.
We had a great night. We fancied up and headed to the Disneyland Hotel. I was excited to see some of the people we met at camp and hopefully feel that same sense of calm that camp
brought us.
I have mentioned before how thankful I am that we have the Gasparro family in our lives. Last night I was reminded of what a blessing they are to us. There were video montages throughout the evening covering different aspects of the camp and what it means to everyone involved. Several of the parents interviewed talked about how isolating diabetes can be. And although there are times when I feel alone, I know because of this family we never truly felt as alone as we could have at diagnosis and in our day to day with diabetes. They have been with us since day one and continue to be right by our side.
And while the entire evening was not exactly filled with calm, (Joe wearing a balloon hat literally as big as him, trying to have the kids eat catered meal and be an attentive audience, etc.) I left the evening feeling at peace. Seeing again and hearing the stories of the camp staff brings my heart such happiness. These young adults that happen to be type 1 who are so poised and such beautiful people really set my mind at ease for the future. They are so inspiring. I am so thankful that camp has come into our lives. I know that year after year camp will continue to be a safe haven for our family and for my daughter. She will always have a place where no one questions why she is doing what she is doing, where everyone understands how she is feeling, where she belongs.
We had a great night. We fancied up and headed to the Disneyland Hotel. I was excited to see some of the people we met at camp and hopefully feel that same sense of calm that camp
brought us.
 |
| Forever Friends |
I have mentioned before how thankful I am that we have the Gasparro family in our lives. Last night I was reminded of what a blessing they are to us. There were video montages throughout the evening covering different aspects of the camp and what it means to everyone involved. Several of the parents interviewed talked about how isolating diabetes can be. And although there are times when I feel alone, I know because of this family we never truly felt as alone as we could have at diagnosis and in our day to day with diabetes. They have been with us since day one and continue to be right by our side.
 |
| Photo Booth Fun |
And while the entire evening was not exactly filled with calm, (Joe wearing a balloon hat literally as big as him, trying to have the kids eat catered meal and be an attentive audience, etc.) I left the evening feeling at peace. Seeing again and hearing the stories of the camp staff brings my heart such happiness. These young adults that happen to be type 1 who are so poised and such beautiful people really set my mind at ease for the future. They are so inspiring. I am so thankful that camp has come into our lives. I know that year after year camp will continue to be a safe haven for our family and for my daughter. She will always have a place where no one questions why she is doing what she is doing, where everyone understands how she is feeling, where she belongs.
Tuesday, September 20, 2011
Our Walk Video 2011
I finished our very first walk video. Julia was diagnosed last year the day after our chapter's walk. So our walk day is approaching along with her one year anniversary.
I would love to have a big walk team to show Julia how many people love and support her. We would love to have you join our team.
http://www2.jdrf.org/site/TR/Walk-CA/Chapter-LosAngeles4041?team_id=19153&pg=team&fr_id=1395
If you cannot join our team please consider supporting our team financially. No amount is too small. Thank you for considering it. The donations go to JDRF. They fund more type 1 diabetes research than any other charity worldwide and are making progress along many promising paths toward better treatments and a cure.
Saturday, September 17, 2011
We have made a change
Most of you know Julia's endocrinologist since leaving the hospital has been the same doctor we saw in the hospital and we were happy. He was there when we called and supported us in our medical plans for Julia and he got us on the road to taking the best care of our girl. We trusted that he and his team were helping us to help Julia be and stay as healthy as possible.
Several months ago I met another pediatric endocrinologist in our area. He was the speaker at a JDRF event talking about how diabetes management started, where it is now and what is on the horizon. I really liked all the things he had to say and my internal struggle began. He was so aware about the current technologies and spoke passionately about how using these technologies offers our children the opportunities to live their best healthiest lives.
I spoke to Bubba about whether or not we should change doctors. We both felt safe with where we were and that we were making the best choices for Julia.
I am the type of person who likes to find out information. I have been studying Type 1 since Julia's diagnosis so I can feel confident that she is getting the best care.
When we went to our last endo appointment in June I began to lose confidence in the care Julia was receiving. We were told what a great job we were doing and her A1C had gone down but (and that is always the problem isn't it? The nagging but) no changes were made to her pump settings. Now I may not know much but I did know that one basal setting with a small change in the afternoon was not right.
For those of you not familiar with pump therapy and how it works here is a very simplified explanation. Please keep in mind I am not a doctor. The pump delivers insulin to Julia 24 hours a day in small amounts called her basal dose. She also gets a bolus dose whenever she eats. That is the insulin she gets to cover the carbohydrates she is consuming. The ratio of basal and bolus is meant to be around 40% basal 60% bolus. Obviously everyone is different and nothing is perfect especially when it comes to diabetes but (there is that word again) Julia's ratios were at about 20% basal 80% bolus and the doctor felt nothing should be changed. In my opinion at that point being on the pump was no different than having her on MDI (multiple daily injections) except we weren't having to give her the insulin in shot form.
We decided that her next appointment would be with the other doctor that I had met. At the beginning of this month we saw our new doctor for the first time. We were all a little nervous going in to something new. The first sigh of relief came when he did her A1C. Previously when we went to the doctor, a week before Julia's appointment, we would have to go to the lab and have a blood draw done. Julia called it her vein shot. I made Bubba take her. He was the one fielding the questions and dealing with lab techs who couldn't always get it on the first try. Our new doctor does the A1C right there in the office. A simple finger stick using her poker that she uses everyday all day long to do her bg checks. A simple drop of blood like she does all day every day when she does her bg checks. A big relief for everyone involved. The result was ready in about 5 minutes. To which Bubba remarked, "That is amazing." The doctor responded, "What is amazing to me is this technology has been around for a long time and doctors are still making their patients go to a lab." I felt a twinge in my heart.
He looked at her pump and her ratios and discussed the changes he wanted to make. He explained until we felt comfortable why we were making these changes. He talked about ratios & percentages (things I had read but didn't completely understand) and made them understandable.
The worst part was when we learned that one of her dosages was completely wrong. When Julia's blood sugar is high we give her a correction dose to try to bring her in range. Whenever we would do this, she would end up going low and we would have to treat the low and give her a lot of food to cover the insulin in her system for correcting the high. Sometimes this would work out and sometimes it would rebound her back into a high. When our new doctor reviewed her correction dose, he said she was at an adult rate. Yes, my petite 6 year old girl was taking an adult dose. This was a much bigger twinge. This was a knife straight in my heart.
We made the changes and left with the understanding that we would contact him and let him know how the changes were working out. Within the first few days we started seeing great numbers. I would email him what was going on & he would advise us of the tweaks to make. He even emailed me first when I didn't want to bother him over the weekend.
I really feel great now about the change we have made. It has taken me a little while to get here. I was really beating myself up for not changing sooner. I questioned how much damage had been done & how much better she could have been feeling. I was hurt. We trusted our doctor to know the things we didn't and to be helping us learn the best things to do for her. I am trying to not feel guilty and just look forward to how much healthier she will be now that we have made the change.
Several months ago I met another pediatric endocrinologist in our area. He was the speaker at a JDRF event talking about how diabetes management started, where it is now and what is on the horizon. I really liked all the things he had to say and my internal struggle began. He was so aware about the current technologies and spoke passionately about how using these technologies offers our children the opportunities to live their best healthiest lives.
I spoke to Bubba about whether or not we should change doctors. We both felt safe with where we were and that we were making the best choices for Julia.
I am the type of person who likes to find out information. I have been studying Type 1 since Julia's diagnosis so I can feel confident that she is getting the best care.
When we went to our last endo appointment in June I began to lose confidence in the care Julia was receiving. We were told what a great job we were doing and her A1C had gone down but (and that is always the problem isn't it? The nagging but) no changes were made to her pump settings. Now I may not know much but I did know that one basal setting with a small change in the afternoon was not right.
For those of you not familiar with pump therapy and how it works here is a very simplified explanation. Please keep in mind I am not a doctor. The pump delivers insulin to Julia 24 hours a day in small amounts called her basal dose. She also gets a bolus dose whenever she eats. That is the insulin she gets to cover the carbohydrates she is consuming. The ratio of basal and bolus is meant to be around 40% basal 60% bolus. Obviously everyone is different and nothing is perfect especially when it comes to diabetes but (there is that word again) Julia's ratios were at about 20% basal 80% bolus and the doctor felt nothing should be changed. In my opinion at that point being on the pump was no different than having her on MDI (multiple daily injections) except we weren't having to give her the insulin in shot form.
We decided that her next appointment would be with the other doctor that I had met. At the beginning of this month we saw our new doctor for the first time. We were all a little nervous going in to something new. The first sigh of relief came when he did her A1C. Previously when we went to the doctor, a week before Julia's appointment, we would have to go to the lab and have a blood draw done. Julia called it her vein shot. I made Bubba take her. He was the one fielding the questions and dealing with lab techs who couldn't always get it on the first try. Our new doctor does the A1C right there in the office. A simple finger stick using her poker that she uses everyday all day long to do her bg checks. A simple drop of blood like she does all day every day when she does her bg checks. A big relief for everyone involved. The result was ready in about 5 minutes. To which Bubba remarked, "That is amazing." The doctor responded, "What is amazing to me is this technology has been around for a long time and doctors are still making their patients go to a lab." I felt a twinge in my heart.
He looked at her pump and her ratios and discussed the changes he wanted to make. He explained until we felt comfortable why we were making these changes. He talked about ratios & percentages (things I had read but didn't completely understand) and made them understandable.
The worst part was when we learned that one of her dosages was completely wrong. When Julia's blood sugar is high we give her a correction dose to try to bring her in range. Whenever we would do this, she would end up going low and we would have to treat the low and give her a lot of food to cover the insulin in her system for correcting the high. Sometimes this would work out and sometimes it would rebound her back into a high. When our new doctor reviewed her correction dose, he said she was at an adult rate. Yes, my petite 6 year old girl was taking an adult dose. This was a much bigger twinge. This was a knife straight in my heart.
We made the changes and left with the understanding that we would contact him and let him know how the changes were working out. Within the first few days we started seeing great numbers. I would email him what was going on & he would advise us of the tweaks to make. He even emailed me first when I didn't want to bother him over the weekend.
I really feel great now about the change we have made. It has taken me a little while to get here. I was really beating myself up for not changing sooner. I questioned how much damage had been done & how much better she could have been feeling. I was hurt. We trusted our doctor to know the things we didn't and to be helping us learn the best things to do for her. I am trying to not feel guilty and just look forward to how much healthier she will be now that we have made the change.
Friday, August 19, 2011
Packing & Stressing
We are leaving on Tuesday at an ungodly hour (3:45 a.m.) for a seven day Alaska cruise. I am very excited and looking forward to the trip but I am nervous of the diabetes unknowns that may come our way. I am trying my best to plan and pack. I even got a loaner pump to take with us in case of a pump failure while we are away. (Thank you Medtronic) :)
We have our letter from the doctor, diabetes supplies & backup supplies but I still feel like I am forgetting things. I am worried about the airport and hoping security goes smoothly. This will be our first plane trip as a family and with diabetes. We have been doing a lot of traveling this summer and everything has gone well so far and I am hoping that this trip does too.
It is funny because before diabetes, I always planned and packed carefully for vacations. Now I do that times 10! Although now my packing priorities have changed. Now diabetes needs are at the top of my list and for everything else, I figure we will make it work.
We have our letter from the doctor, diabetes supplies & backup supplies but I still feel like I am forgetting things. I am worried about the airport and hoping security goes smoothly. This will be our first plane trip as a family and with diabetes. We have been doing a lot of traveling this summer and everything has gone well so far and I am hoping that this trip does too.
It is funny because before diabetes, I always planned and packed carefully for vacations. Now I do that times 10! Although now my packing priorities have changed. Now diabetes needs are at the top of my list and for everything else, I figure we will make it work.
Saturday, August 6, 2011
Hooray for the Goofy Giveaway
As some of you know, we entered the giveaway at My Life as a Pancreas for the new Mickey Mouse Clubhouse Book Coco and Goofy's Goofy Day and we won!
It arrived in the mail today and Julia was very excited to receive it. It is a great book which we have already read three times. In the story the Mickey Mouse Clubhouse friends find out that their friend Coco the Monkey has Type 1 Diabetes. She is invited to Goofy's birthday party. Goofy worries about whether or not she should go to the party since she has diabetes. He learns that she can do anything he can do and eat treats too. In the end Goofy ends up needing to be taken care of because he ate too much junk and Coco is fine and had a great day. Julia thought the ending was very funny and enjoyed the book very much.
This book is part of a partnership between Disney and Eli Lilly. Disney has even added a new section on their family website all about Life with Type 1. If you have not had a chance to check it out you can HERE.
Thank you to Stephanie for having this giveaway and thank you to Disney and Eli Lilly for making my girl smile.
It arrived in the mail today and Julia was very excited to receive it. It is a great book which we have already read three times. In the story the Mickey Mouse Clubhouse friends find out that their friend Coco the Monkey has Type 1 Diabetes. She is invited to Goofy's birthday party. Goofy worries about whether or not she should go to the party since she has diabetes. He learns that she can do anything he can do and eat treats too. In the end Goofy ends up needing to be taken care of because he ate too much junk and Coco is fine and had a great day. Julia thought the ending was very funny and enjoyed the book very much.
This book is part of a partnership between Disney and Eli Lilly. Disney has even added a new section on their family website all about Life with Type 1. If you have not had a chance to check it out you can HERE.
Thank you to Stephanie for having this giveaway and thank you to Disney and Eli Lilly for making my girl smile.
Sunday, July 24, 2011
Camp Conrad-Chinnock
It's funny while we were away at camp, I had all of these posts swirling in my head and now that I am home I am having trouble putting it all into words.
Camp Conrad-Chinnock has been in operation for more than 50 years. It was started by Dr. Chinnock who worked at Loma Linda hospital with children with diabetes. He wanted to take them to summer camp and was told that it is too dangerous. He didn't listen, thank goodness.
We made our first trip to there a week ago Friday. We arrived just before lunch and found out we would be cabin mates with our friends who have been with us every step of the way on our journey so far. The cabins are very nice. Each family has there own "room" with a curtain for a door. In the middle of the cabin is a shared bathroom. Ours was the first session with the bathrooms in the cabins. I think we came at just the right time :) No hiking to the bathrooms in the middle of the night for us!
After settling into our cabin, the weekend began. I have written previously on my blog how much I appreciate the DOC (Diabetes Online Community) because it is a way to connect with people who "get it." Camp was the DOC in real life. I was surrounded by people who get it. Parents, Camp Staff, and kids who all understand Type 1 diabetes and what it means to live with Type 1 diabetes every day.
I wish I could explain better how great this place was. It is so much more than just a camp. It gave us all a sense of peace and belonging. Julia made a friend there who has diabetes too and she loved it. I could just see the joy in her when she would run off to play with her.
At one point we broke into groups, kids without diabetes, kids with diabetes & parents. We were talking about diabetes and how we felt about it. The kids' groups made posters and would share them with the group when they returned. Julia wrote she liked diabetes because she got to come to camp and make a new friend. Joe said he sometimes felt like he wasn't part of the family because we are caring for Julia all the time. And although it broke my heart to hear him say that, I am glad he felt safe enough to say it.
Most of the time when we wold have activities the kids would go off with the counselors to play camp games (Sharks & Minnows, Capture the Flag, Water Olympics, etc.) and the adults would have different sessions. One of my favorites was one they called "Meet the Experts." The experts were staff members who are Type 1. They talked about what it was like growing up with Type 1, how their parents helped or hurt them in learning how to manage their own care, and where they are now with their diabetes. It was great to be able to hear their open and honest perspective. We had sessions with the medical staff, nutritionist and the camp director, Rocky Wilson. One session with Rocky we met separately first moms and then later in the day the dads got their turn. The women's circle was amazing, we shared our feelings with no judgement only acceptance. We talked about our struggles and frustrations. We learned about surrender and scheduling time for ourselves. We laughed, we cried and we understood each other.
Not all the time at camp was scheduled. We had family free time each day. During that time, there were all kinds of activities to do. Arts and crafts, archery, ropes course, rock wall, pool and the lodge which was Joe's favorite place to go. It had a pool table, ping pong, foosball table a basketball game and more.
One of the other great things on a practical level was the meals. Not only was all the food good, the carb information was written on a white board for every meal and snack. Everything served was included serving size and carbs. Not having to cook or do dishes was a nice break too.
The funny thing is it is a diabetes camp and on some levels, diabetes was the last thing on our minds. The staff all carry fanny packs with supplies for checking blood sugar and low snacks. So even when Julia was away from me I knew she was okay. She got to be independent and go where she wanted without me hovering over her. (It took both of us a little while to adjust to this). She also liked to have the staff check her blood sugar instead of me or Bubba.
There were campfires every night with silly songs and skits. We hiked a mile and back to Jenks Lake where the kids fished and canoed. I got to see a demonstration on Diabetes Alert Dogs which was amazing! We got screened for TrialNet. We made dream catchers. We ate sno cones and root beer floats. We stayed up late. We got really dirty. All in all it was an amazing four days that I will treasure forever.
Camp Conrad-Chinnock has been in operation for more than 50 years. It was started by Dr. Chinnock who worked at Loma Linda hospital with children with diabetes. He wanted to take them to summer camp and was told that it is too dangerous. He didn't listen, thank goodness.
We made our first trip to there a week ago Friday. We arrived just before lunch and found out we would be cabin mates with our friends who have been with us every step of the way on our journey so far. The cabins are very nice. Each family has there own "room" with a curtain for a door. In the middle of the cabin is a shared bathroom. Ours was the first session with the bathrooms in the cabins. I think we came at just the right time :) No hiking to the bathrooms in the middle of the night for us!
 |
| Our cabin is the one a little further away in the picture. |
I wish I could explain better how great this place was. It is so much more than just a camp. It gave us all a sense of peace and belonging. Julia made a friend there who has diabetes too and she loved it. I could just see the joy in her when she would run off to play with her.
 |
| Julia & her new friend |
Most of the time when we wold have activities the kids would go off with the counselors to play camp games (Sharks & Minnows, Capture the Flag, Water Olympics, etc.) and the adults would have different sessions. One of my favorites was one they called "Meet the Experts." The experts were staff members who are Type 1. They talked about what it was like growing up with Type 1, how their parents helped or hurt them in learning how to manage their own care, and where they are now with their diabetes. It was great to be able to hear their open and honest perspective. We had sessions with the medical staff, nutritionist and the camp director, Rocky Wilson. One session with Rocky we met separately first moms and then later in the day the dads got their turn. The women's circle was amazing, we shared our feelings with no judgement only acceptance. We talked about our struggles and frustrations. We learned about surrender and scheduling time for ourselves. We laughed, we cried and we understood each other.
Not all the time at camp was scheduled. We had family free time each day. During that time, there were all kinds of activities to do. Arts and crafts, archery, ropes course, rock wall, pool and the lodge which was Joe's favorite place to go. It had a pool table, ping pong, foosball table a basketball game and more.
One of the other great things on a practical level was the meals. Not only was all the food good, the carb information was written on a white board for every meal and snack. Everything served was included serving size and carbs. Not having to cook or do dishes was a nice break too.
The funny thing is it is a diabetes camp and on some levels, diabetes was the last thing on our minds. The staff all carry fanny packs with supplies for checking blood sugar and low snacks. So even when Julia was away from me I knew she was okay. She got to be independent and go where she wanted without me hovering over her. (It took both of us a little while to adjust to this). She also liked to have the staff check her blood sugar instead of me or Bubba.
There were campfires every night with silly songs and skits. We hiked a mile and back to Jenks Lake where the kids fished and canoed. I got to see a demonstration on Diabetes Alert Dogs which was amazing! We got screened for TrialNet. We made dream catchers. We ate sno cones and root beer floats. We stayed up late. We got really dirty. All in all it was an amazing four days that I will treasure forever.
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