On Monday, April 5th, we went in for Ellee's one year check up!
We didn't have the best morning, including a point in which I didn't think my car was going to make it to Dublin. After calling to let them know we were running behind, we finally got there and had a fairly good visit!
They were fairly happy with her numbers over all. Her A1C was 8.3 (they like it to be around 7-8). Her numbers have been higher than what they should be, but they were fairly consistent with very few lows. We did ask about getting a prescription for an insulin pen and the nurse came in and demonstrated one for us! I will admit that I was nervous about them after giving Gaven a shot with his. For some reason it seemed like the needle on his pen was twice as long as the syringes, but after seeing the demo pen, they almost looked smaller! The girls got a kick out of watching us learn to "bleed the air out" of a new cartridge of insulin! To do this, you have to set the pen to 2 units and press the "inject" button. You do this into the air to push any air out of the cartridge before the first use and it shoots a stream of insulin (or in this case of demonstration it was saline), but the girls thought it was just as fun as trying to run through a sprinkler or catch bubbles!
The doctor came in to go over our log book with us. There really isn't anything worse than having a doctor "yell" at you for doing something you didn't know you weren't suppose to do! She did politely tell us to not adjust the long acting insulin because it takes a few days of consistent dosing to see any results. Josh and I talked afterwords and he admitted that he did the same thing, he just didn't write it down in the log book! To us, our thinking was rational so why not give it a try?! Now we know!
The yearly blood draw afterwords, however, was not so pleasant. =( We went next door for this and they had a wonderful play area in the waiting room! Which was nice because the girls were going stir crazy after sitting in the doctors office for 2 hours! We got called back in a matter of minutes, Dani was ready to follow the nurse, but Ellee was entranced in the toy! Josh told Dani that she has to stay here and play and without looking up El says "I'm staying here to play too!" I wish I could have let her, but couldn't. We did have a great nurse that worked as fast as she could with minimal pain. Ellee really hasn't had that many blood draws, but she knew that she got that stretchy cord wrapped around her arm and tried to do that herself while the nurse was getting ready! What followed however wasn't not so fun or cute. They had a sheet of different bandages for her to choose from. After blood donations and draws during my pregnancies, I learned that I was okay as long as I didn't watch them insert the needle. Using this, I tried to get El to concentrate on the sheet and deciding what she wanted. The nurse, being as good as she was, recognized this and inserted the needle. Unfortunately, it still hurt and she screamed, then cried. It was over fast, but in the rush and getting El to calm down, I forgot to grab the prescriptions and print out from the doctors when I grabbed my purse and the diabetes bag!
We went over to Cici's for a late lunch and I got a phone call from a 614 area code and immediately answered it. Once the nurse said who she was, it immediately dawned on me that I didn't grab the papers! Oops!!! Thankfully we were still in town and not halfway home!
Over all, we had a very good visit! It's been almost a year since diagnosis and I have to admit that we are all handling this very well! Don't get me wrong, I wouldn't wish Type 1 on my worst enemy, but you definitely learn how strong you really are when faced with it.
Monday, April 12, 2010
Tuesday, April 6, 2010
Kindergarten Screening
I can't believe how fast time goes! Seems like Ellee was just born yesterday, and now she's ready to start full time school! She's been in preschool for less than a year and a half, for just a couple hours 4 days a week. Preschool has been very manageable with diabetes because she eats and gets a shot before school and snacks are kept to around 15 carbs or less. The only thing they have to watch for is signs that she's low, which equates to watching to see if she doesn't feel good or isn't acting like her normal self. This is the beginning of April and there has only been one or two instances of her getting low, so I have to commend Grandma and Mrs. M & Miss H for the great job of watching and controlling since I can't be there!
But now it's time for Ellee to start "big kid school"! I'm excited about this, but with her medical condition, I am an absolute WRECK! When we were at Children's Hospital (almost a year ago) all I could think about is "how are we going to handle full time school???" Since I moved, I've been looking into different school districts and checking on their nursing staff and how they handle T1D children. We found out that when Indian Lake built their new elementary school, they included a very nice nurses station and have a full time nurse. At the time we were told that she has around 5 T1D kids! This is great news because most rural schools only have a nurse that is part of the county and visits different school.
Our big day was Tues, March 23rd at 5pm! I can't tell you how nervous I was about if she knew what they needed her to know! After being assured by some friends on facebook that she'd be okay, I felt much better going into it! Once we got there, we signed her in and off she went with one of the high schoolers - not shy at all, but excited to see where these big kids were taking her!
The school nurse was talking with all the parents one on one, so when it was our turn, we headed over to her table! As I went to sit down, she stood up to shake my hand and introduce herself. I said my name and "we are going to get to know each other VERY well this year!". She gave me an odd look and I said "Elizabeth has Type 1 Diabetes". It use to choke me up every time I said that out loud. I can't describe how hard it is to admit that you don't have a perfectly healthy child. But I am over-coming that and am now able to say it with a steady voice and dry eyes. Mrs. M smiled and immediately wanted to know more, pencil in hand and took lots of notes as we chatted!
As we wrapped up our conversation, she asked permission to tell the staff that they have another diabetic in the pre-school staff meeting and I immediately agreed that she can... and should! Like I told her, I think that EVERYONE should be aware of the symptoms because I believe that catching it as early as possible may increase the length of the honeymoon phase! Since teachers are with kids for 6 hours a day, they are likely to see the warning signs.
We also talked with the principal of the school and was in agreement that before school starts there will be a meeting with him, the nurse and her teacher to go over an action plan for the year. I can't even begin to express how much of a relief it is to know that they are so willing to work with us! I hear of so many people who get nothing but grief from the school about their child's care and hope that we never have to deal with that!
But now it's time for Ellee to start "big kid school"! I'm excited about this, but with her medical condition, I am an absolute WRECK! When we were at Children's Hospital (almost a year ago) all I could think about is "how are we going to handle full time school???" Since I moved, I've been looking into different school districts and checking on their nursing staff and how they handle T1D children. We found out that when Indian Lake built their new elementary school, they included a very nice nurses station and have a full time nurse. At the time we were told that she has around 5 T1D kids! This is great news because most rural schools only have a nurse that is part of the county and visits different school.
Our big day was Tues, March 23rd at 5pm! I can't tell you how nervous I was about if she knew what they needed her to know! After being assured by some friends on facebook that she'd be okay, I felt much better going into it! Once we got there, we signed her in and off she went with one of the high schoolers - not shy at all, but excited to see where these big kids were taking her!
The school nurse was talking with all the parents one on one, so when it was our turn, we headed over to her table! As I went to sit down, she stood up to shake my hand and introduce herself. I said my name and "we are going to get to know each other VERY well this year!". She gave me an odd look and I said "Elizabeth has Type 1 Diabetes". It use to choke me up every time I said that out loud. I can't describe how hard it is to admit that you don't have a perfectly healthy child. But I am over-coming that and am now able to say it with a steady voice and dry eyes. Mrs. M smiled and immediately wanted to know more, pencil in hand and took lots of notes as we chatted!
As we wrapped up our conversation, she asked permission to tell the staff that they have another diabetic in the pre-school staff meeting and I immediately agreed that she can... and should! Like I told her, I think that EVERYONE should be aware of the symptoms because I believe that catching it as early as possible may increase the length of the honeymoon phase! Since teachers are with kids for 6 hours a day, they are likely to see the warning signs.
We also talked with the principal of the school and was in agreement that before school starts there will be a meeting with him, the nurse and her teacher to go over an action plan for the year. I can't even begin to express how much of a relief it is to know that they are so willing to work with us! I hear of so many people who get nothing but grief from the school about their child's care and hope that we never have to deal with that!
Monday, March 15, 2010
Dress Shopping
On Sunday I took Ellee to Columbus to get her dress ordered for her Uncle Carl's wedding in June! I think I was pushing it waiting as long as I did to order it, but we lucked out and they let us take the one off the rack since it was her size! I had a hard time getting her to go because she just was NOT in the mood to go shopping! I am blaming it on her being low because when I checked her half an hour after she drank 30 carbs of juice, she was only 97... YIKES!!! Not low yet (any thing under 90 is considered low for her), but it seems like once she gets under 100, she drops fast!
Ellee LOVES dressing up and looking pretty, so she will be loving it on the wedding day when we get to do up her hair and give her flowers! She was calling this flower girl dress HER Wedding Dress! When she first found out she was going to be in Carl & Moriah's wedding, she asked "Am I going to look as beautiful as Aunt Moriah?!"
Ellee LOVES dressing up and looking pretty, so she will be loving it on the wedding day when we get to do up her hair and give her flowers! She was calling this flower girl dress HER Wedding Dress! When she first found out she was going to be in Carl & Moriah's wedding, she asked "Am I going to look as beautiful as Aunt Moriah?!"
Tuesday, February 2, 2010
Good Bye Honeymoon???
We've been having problems with Ellee having high blood sugar (BS) readings lately. Any time there is a high reading, we have to think about what is causing it. Is it because she had too many carbs that we didn't account for when dosing her insulin? Was it some of the cold medicine we were giving her? Did she sneak food or drink or just have too many for a snack. Did we miscalculate how many carbs she is eating and under-dose her? So many things could factor in, and there are quite a few things that we can do to try to adjust, such as giving her a dose of insulin for her afternoon snack or changing her carb:insulin ratio to give her more insulin. But in the back of our minds, there is the terrifying thought that she might be coming out of her "Honeymoon Phase".
Usually after diagnosis, every one goes through a honeymoon phase. It is where any remaining Beta Cells that were not completely killed off start to kick back in and work after insulin injections are started. The best way I can relate it is to compare them to wounded soldiers in battle. After most of the cells are killed off, ones that are "wounded" give up and withdraw because they know they are out numbered. After diagnosis administering insulin is like sending in the backup troops to help the wounded cells. Seeing that they have back up, the cells kick back in and start working again. The great thing is that we don't inject that much insulin, and in some cases, we were able to bypass a shot for a meal! The down side is that these cells are damaged and will eventually die off.
Last week I was racking my brain with Mom trying to figure out why she has been so high in the afternoon. Looking at all the numbers in the log book trying to put together some kind of pattern, I had a horrible thought in the back of my mind: is this the end of her honeymoon???
As a realist, I know that it has to come to an end at some time, but I'm not ready for that yet! In my weird way of thinking, I some how equate the length of her honeymoon to the fact that we caught this disease early enough that not too many of the cells were killed/damaged. On that note, we are 9 months in, and the average is 6-12 months.
On the way to BounceU on Sunday to meet with other families of the JDRF Dayton Chapter, I mentioned to Staci about Ellee's numbers being high. She said that Gaven's has been too. I had read a while ago and found it very interesting that about half of the people diagnosed was right around their birthday, and that about 25% of the people say that symptoms and diagnosis came within months after a vaccine or flu shot. I'm starting to wonder... No matter when a person was diagnosed, did their honey moon end between Jan-March? My theory: with all the colds and flus going around and the immune system working over time, maybe it's also working on the rest of the beta cells. I think I'm going to get on Juvination and do a little bit of research and maybe take a poll!!!
Although I am greatly saddened by the thought of coming out of the honeymoon phase, I do realize that she will have to eventually. After reading about an Ohio woman's journey through an Isolet Transplant... the positive side of this is that for a transplant, there has to be absolutely no beta cell activity! Ellee is many years away from the possibility of a transplant, but I'm hopeful that there will be a cure breakthrough in her time!
Live Life, Be Brave!
Usually after diagnosis, every one goes through a honeymoon phase. It is where any remaining Beta Cells that were not completely killed off start to kick back in and work after insulin injections are started. The best way I can relate it is to compare them to wounded soldiers in battle. After most of the cells are killed off, ones that are "wounded" give up and withdraw because they know they are out numbered. After diagnosis administering insulin is like sending in the backup troops to help the wounded cells. Seeing that they have back up, the cells kick back in and start working again. The great thing is that we don't inject that much insulin, and in some cases, we were able to bypass a shot for a meal! The down side is that these cells are damaged and will eventually die off.
Last week I was racking my brain with Mom trying to figure out why she has been so high in the afternoon. Looking at all the numbers in the log book trying to put together some kind of pattern, I had a horrible thought in the back of my mind: is this the end of her honeymoon???
As a realist, I know that it has to come to an end at some time, but I'm not ready for that yet! In my weird way of thinking, I some how equate the length of her honeymoon to the fact that we caught this disease early enough that not too many of the cells were killed/damaged. On that note, we are 9 months in, and the average is 6-12 months.
On the way to BounceU on Sunday to meet with other families of the JDRF Dayton Chapter, I mentioned to Staci about Ellee's numbers being high. She said that Gaven's has been too. I had read a while ago and found it very interesting that about half of the people diagnosed was right around their birthday, and that about 25% of the people say that symptoms and diagnosis came within months after a vaccine or flu shot. I'm starting to wonder... No matter when a person was diagnosed, did their honey moon end between Jan-March? My theory: with all the colds and flus going around and the immune system working over time, maybe it's also working on the rest of the beta cells. I think I'm going to get on Juvination and do a little bit of research and maybe take a poll!!!
Although I am greatly saddened by the thought of coming out of the honeymoon phase, I do realize that she will have to eventually. After reading about an Ohio woman's journey through an Isolet Transplant... the positive side of this is that for a transplant, there has to be absolutely no beta cell activity! Ellee is many years away from the possibility of a transplant, but I'm hopeful that there will be a cure breakthrough in her time!
Live Life, Be Brave!
Wednesday, January 20, 2010
Very Encouraging!
Just got a news letter from the local JDRF chapter. One of the front page articles was about Isolet Transplants by some one who actually had it done! The fact that she's been insulin free for over a year is wonderful news!
I heard about this shortly after El was diagnosed as something that is on the horizon. The article I read involved using stem cells to generate as isolets then injecting them in the body and they implant themselves into the pancreas. This article talked about pulling the isolets from a donated kidney (or two) then injecting them.
One reason that I'm very hopeful about this possible procedure is that there is less chance of rejection. If there is rejection, it will hopefully just be the cells and shouldn't be the whole pancreas. But one thing that I've wondered about it is the rejection meds that you would have to take. Would the rejection meds be any better or worse than taking the insulin? I still have a lot of research to do on this, and I have a blog to read about this woman's journey through the transplant and recovery.
The hope of Isolet Transplants becoming a reality is what drives me to do fundraisers for JDRF. There are so many people who deserve some relief from the daily routine of keeping their blood sugars in check!
I heard about this shortly after El was diagnosed as something that is on the horizon. The article I read involved using stem cells to generate as isolets then injecting them in the body and they implant themselves into the pancreas. This article talked about pulling the isolets from a donated kidney (or two) then injecting them.
One reason that I'm very hopeful about this possible procedure is that there is less chance of rejection. If there is rejection, it will hopefully just be the cells and shouldn't be the whole pancreas. But one thing that I've wondered about it is the rejection meds that you would have to take. Would the rejection meds be any better or worse than taking the insulin? I still have a lot of research to do on this, and I have a blog to read about this woman's journey through the transplant and recovery.
The hope of Isolet Transplants becoming a reality is what drives me to do fundraisers for JDRF. There are so many people who deserve some relief from the daily routine of keeping their blood sugars in check!
Monday, January 18, 2010
Uck... Birthday Parties!
I think for any parent, the thought of going to a birthday party brings mixed emotions. As a parent, you realize that there really isn't any GOOD time of day to have a party. What do you do?!
We had a birthday party on Sunday for a friend of Ellee's. She was so excited to see her friend (after not seeing her for about a year) AND she was excited to go bowling (a new found love)! The party was from 3-5:30, a really odd time to adjust for eating schedules, especially since we usually don't eat dinner till 6. It's funny because I had read about other T1 families talk about how much they eat in terms of how many units of insulin you need... and I'm realizing how true it is!! I gave El 3 1/2 units at the end of the party... about 100 carbs of food! Her usual shots of Humalog at a meal are 1-2 units, occasionally she'll be a little piggy and eat 3 bowls of cereal and get 3 units at breakfast. But for her to eat 100 carbs in the afternoon is VERY unusual!
Another thing that makes a non-pumping T1 mom cringe when it comes to birthday parties is that everything is so spread out. When we went for El's last check up with the Endo, her A1C was higher than desired. While we were keeping her numbers in a good range, we were waiting too long after she got done eating to give her a shot and the Endo made it very clear that we should give it to her a lot sooner. In essence we were "chasing" her BS levels. While the end result is the same, her A1C will be higher because of the higher level of BS until the insulin kicks in and starts bringing it down. Yesterday (like most birthday parties), it was close to 2 hours from the time Ellee started eating till I was able to give her a shot. She started with a couple chocolate covered pretzel sticks, then the pizza came and she had two pieces... then waiting. Ellee was anxious to have cake and ice cream and I was anxious because I wanted her to finish eating so that I could dose her. I hate to guess how much she would eat because it would be my luck that she wouldn't eat it all and we risk going into a Hypo because I gave her too much insulin. So, I opted for the chance of a higher A1C and waited to see what she actually ate. Good thing I did because she didn't finish all her ice cream.
Another dread about birthday parties for T1 parents... the goody bags they take home. Okay, so this is a dread for any parent, especially when you get the noise maker toys like the "hand clappers" that was in El's bag! We got to hear that for half the car ride home. =( The other dread is the candy that is in there. Kids love it, parents hate it. Parents especially hate it when you've dosed your kid for all the carbs you plan on them eating for 3-4 hours.
Oh well... life goes on! Hopefully good control all the other times will make up for what seemed like a long afternoon! *sigh* Yet another advantage of using an insulin pump. We will definately be checking into this in a few years!
We had a birthday party on Sunday for a friend of Ellee's. She was so excited to see her friend (after not seeing her for about a year) AND she was excited to go bowling (a new found love)! The party was from 3-5:30, a really odd time to adjust for eating schedules, especially since we usually don't eat dinner till 6. It's funny because I had read about other T1 families talk about how much they eat in terms of how many units of insulin you need... and I'm realizing how true it is!! I gave El 3 1/2 units at the end of the party... about 100 carbs of food! Her usual shots of Humalog at a meal are 1-2 units, occasionally she'll be a little piggy and eat 3 bowls of cereal and get 3 units at breakfast. But for her to eat 100 carbs in the afternoon is VERY unusual!
Another thing that makes a non-pumping T1 mom cringe when it comes to birthday parties is that everything is so spread out. When we went for El's last check up with the Endo, her A1C was higher than desired. While we were keeping her numbers in a good range, we were waiting too long after she got done eating to give her a shot and the Endo made it very clear that we should give it to her a lot sooner. In essence we were "chasing" her BS levels. While the end result is the same, her A1C will be higher because of the higher level of BS until the insulin kicks in and starts bringing it down. Yesterday (like most birthday parties), it was close to 2 hours from the time Ellee started eating till I was able to give her a shot. She started with a couple chocolate covered pretzel sticks, then the pizza came and she had two pieces... then waiting. Ellee was anxious to have cake and ice cream and I was anxious because I wanted her to finish eating so that I could dose her. I hate to guess how much she would eat because it would be my luck that she wouldn't eat it all and we risk going into a Hypo because I gave her too much insulin. So, I opted for the chance of a higher A1C and waited to see what she actually ate. Good thing I did because she didn't finish all her ice cream.
Another dread about birthday parties for T1 parents... the goody bags they take home. Okay, so this is a dread for any parent, especially when you get the noise maker toys like the "hand clappers" that was in El's bag! We got to hear that for half the car ride home. =( The other dread is the candy that is in there. Kids love it, parents hate it. Parents especially hate it when you've dosed your kid for all the carbs you plan on them eating for 3-4 hours.
Oh well... life goes on! Hopefully good control all the other times will make up for what seemed like a long afternoon! *sigh* Yet another advantage of using an insulin pump. We will definately be checking into this in a few years!
Wednesday, January 6, 2010
The Gears are Starting to Roll!
Literally! I'm so excited! I just got off the phone with Vicky from the JDRF Dayton Chapter about meeting with her in regards to doing a Ride to Cure!
When I first started looking around jdrf.org after Ellee was diagnosed, I had it in the back of my mind that "some day" it would be GREAT to be able to accomplish one of these Century Rides (100 miles) in her honor. Knowing that my physical condition was getting better, but not the best, I put that on my "to do list" for around 5 years out.
I completed a Half Marathon Skate in August and amazed myself at the fact that I was able to finish, not be last (but I was second to last!), and that my average time per mile was less than 5 minutes! A week after that, Ellee had strapped on her little kid roller skates and proceeded to start her slow roll around the block. I could see El's frustration with the wheels not rolling like she wants them too. She looks up at me and says "Mom, I need lessons to learn to skate like you!"
It's times like that when I swell with pride and know that no matter how often I feel like I'm not the best parent that I should be, that I'm not doing too bad after all! I love that she still looks up to me and wants to do the same things that I like to do! It's that point when I know that I need to push myself into uncharted territory, step out of my comfort zone, and set goals for myself that I never otherwise would! After getting back into cycling and doing a few 20+ mile bike rides, I've set my sights to train and attempt a Century Ride this summer!
I didn't really plan on doing the Ride to Cure Century this summer, but I'm thinking that I need to just make up my mind and do it. The required fundraising amount is between $3,000-$4,000 and is very intimidating. But after I read a post on Facebook from Staci about how her son Gaven is adjusting, it made me realize I've got two little kids to push me through this! Two little kids who are going through things that I can only comprehend 90% off. I know that a true cure is a long way off, but the progression they are making is huge!
While being realistic that these kids may not get to use any of these new sciences for a while, my wish for them is to overcome the disease all together. Not to let it take over their life, but to make it a little side note to their accomplishments! Not to let this stop them from any dreams or goals that they may have! I want to ride in their honor... and hopefully be an inspiration to them!
Let the fund raising begin!!! Okay, so I can't do much till after they release the new ride dates and I find out the amount I have to raise! How about this.... LET THE BRAIN STORMING BEGIN!!!
When I first started looking around jdrf.org after Ellee was diagnosed, I had it in the back of my mind that "some day" it would be GREAT to be able to accomplish one of these Century Rides (100 miles) in her honor. Knowing that my physical condition was getting better, but not the best, I put that on my "to do list" for around 5 years out.
I completed a Half Marathon Skate in August and amazed myself at the fact that I was able to finish, not be last (but I was second to last!), and that my average time per mile was less than 5 minutes! A week after that, Ellee had strapped on her little kid roller skates and proceeded to start her slow roll around the block. I could see El's frustration with the wheels not rolling like she wants them too. She looks up at me and says "Mom, I need lessons to learn to skate like you!"
It's times like that when I swell with pride and know that no matter how often I feel like I'm not the best parent that I should be, that I'm not doing too bad after all! I love that she still looks up to me and wants to do the same things that I like to do! It's that point when I know that I need to push myself into uncharted territory, step out of my comfort zone, and set goals for myself that I never otherwise would! After getting back into cycling and doing a few 20+ mile bike rides, I've set my sights to train and attempt a Century Ride this summer!
I didn't really plan on doing the Ride to Cure Century this summer, but I'm thinking that I need to just make up my mind and do it. The required fundraising amount is between $3,000-$4,000 and is very intimidating. But after I read a post on Facebook from Staci about how her son Gaven is adjusting, it made me realize I've got two little kids to push me through this! Two little kids who are going through things that I can only comprehend 90% off. I know that a true cure is a long way off, but the progression they are making is huge!
While being realistic that these kids may not get to use any of these new sciences for a while, my wish for them is to overcome the disease all together. Not to let it take over their life, but to make it a little side note to their accomplishments! Not to let this stop them from any dreams or goals that they may have! I want to ride in their honor... and hopefully be an inspiration to them!
Let the fund raising begin!!! Okay, so I can't do much till after they release the new ride dates and I find out the amount I have to raise! How about this.... LET THE BRAIN STORMING BEGIN!!!
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