I got an email back from Kacey's Endo. Looks like we're going to increase ALL basals again! She's running high all the time so we're going to try increasing everything again and see what happens. It was sort of a reality slap when we started looking at her TDD of insulin. She's getting an estimated 2,250 units of insulin a month! With the growth she is having and then trying to contain those hormones along with hunger pangs and the holidays...we're fighting quite a battle here! Now she's going to be getting more with the basal increases!
Virginia was also slammed with a winter storm. The weatherman predicted we would get 2-5 inches of snow but we only ended up getting about an inch once it finished raining and sleeting. The sight of all that white stuff sent the West house into a frenzy. They closed schools hours before it even hit because of the amount they were predicting. It's a good thing they did because those roads were a mess! We were also getting thunder...yes THUNDER during the snow storm. It was actually really cool because it was all over the news and when it thunders during a snow storm it is actually huge snow bursts. They had a chance to get outside and play in the snow today. It was COLD though and the snow was mostly ice so that meant...no snowman! :(
The girls were actually thrilled that schools were closed but Kayleigh was a bit disappointed when the church youth Christmas party was cancelled. She was looking forward to meeting the other youth for the first time. It's been postponed til January 6th. So she still has something to look forward to! The other downfall of the snow was that schools were closed again today and this was their last day before Christmas vacation. So now they won't go back to school til after the first of the year. That means no Christmas parties and they won't be able to give their teachers the gifts they chose until after the first of the year! Bummer!
Today we took the time to make Christmas cookies. I was going to bypass doing this with the girls this year but they talked me into it and we ventured out to the store to get everything to make them this morning. We've been baking ALL day! After 120 Oreo truffles, 2 dozen sugar cookies, 1 dozen chocolate chip cookies and 1 dozen chocolate peanut butter chip cookies with Heath bits....I'm exhausted! The girls had so much fun though and I'm glad we did it! :) It always makes for some fun memories. Once we finished, we put together a cookie tray for our neighbors. Their son broke his arm last night on the ice and so Kacey and I made a trip down there to take him some cookies. It was so heartwarming for us and Kacey was smiling ear to ear when we left there. She turned to me in the van and said , "Mommy, it feels so good to give." Ahhhh, what a joyful sound! My heart overflowed at that moment. This is what it's all about! We didn't make those cookies for us to eat. We made them to give away and share that warm fuzzy feeling! :)
There is a little more excitement in the air though! Tomorrow is our Disney On Ice show with Starlight and tomorrow night into early Sunday morning they are calling for another snow storm to bring in 4-8 inches of snow!
I have loads of pics to upload to Facebook! I will get them uploaded soon :)
Friday, December 17, 2010
Wednesday, December 15, 2010
D-Report Card
Today was Kacey's Endo appointment and the D-report card results are in! She's back up to a
8.6%
Can you say...YUK! Thank you hormones and high blood sugars. YOU SUCK!
OK, I feel better now! :) That being said, we were smacked with a bit of bad news. The doctor brought Kacey's Cozmo pump back in and said she was not able to download the settings or logs because Cozmo no longer supported online downloading. WHAT?!?! What does this mean? This means that we can still access her logs and settings at home and email them to the doctor but they can't access then when we're there. So now what? Well, it's kind of bittersweet. We were looking to start a new pump upgrade toward the end of the school year in May/June but now this means we can push forward with the upgrade. There is a pump class coming up on January 6th. So I called to get Kacey registered for the class. Hopefully it works out and we will be able to actually put our hands on the Animas and the MiniMed. She is not interested in the OmniPod at all. I know I had asked for help before with the two pumps. Each of you loved them for different reasons and I'm so torn as to which way to go. The ultimate decision is up to Kacey and after looking at both pumps on the websites and watching the videos. She's still up in the air with her decision but I'm guessing she is going to lean toward MiniMed. I know getting the CGMS is part of the deal. She definately wants that but she doesn't want the 2 seperate devices attached to her. And with middle school in her near future and watching her conceal her pump now...I DO understand her reasoning and its her body and her decision. Also, as we watched the Animas video, it seemed like there was alot of steps to go through when bolusing and such. Is that correct or were we misunderstanding it all? (Wendy, help here! You know the boat we're in!) Kacey is all about dosing and putting her pump away quickly so she can eat or go on with the activity she is doing. When we watched the MiniMed video, it seemed like it was a shorter process.
AHHHHHH the confusion! Anyone that can offer advice with these two pumps...PLEASE HELP! If you were on one pump and you switched, do you like it? If not, why? Do you regret your switch? What are your favortite features? Your least favorite?
Ultimately we have a few favorite features with Cozmo. Our 1st fav...IOB! :) My next fav is the alerts....15 min after a low and 2 hours after a high. Kacey's pump will beep and tell her to test. This gives her the freedom to treat herself with and without help. If she was low, then it reminds her to make sure her sugar comes up in safe range and if shes high then she can retest to see if she needs another correction. I also like the alert that reminds me to change her site every 3 days. Yep, all the alerts and beeps are important for us so we need a pump that is going to do that. I don't know all the features of the two pumps so I'd love the feedback!
Also....Noah....our Endo office LOVED your blue flamingo idea and our Endo thought it was a VERY cool idea! While we were waiting in the waiting room, a very nice Christian lady asked what Kacey had in her arms? Kacey shared Deputy with her along with your letter (which we laminated) and gave her a mini lesson while we sat there. The nice lady was so impressed and she said to tell you...."Continue to do great things and you will be blessed." So we wanted to share that with you. One person educated....millions more to go! We've got more pics to upload! THANKS NOAH!!
8.6%
Can you say...YUK! Thank you hormones and high blood sugars. YOU SUCK!
OK, I feel better now! :) That being said, we were smacked with a bit of bad news. The doctor brought Kacey's Cozmo pump back in and said she was not able to download the settings or logs because Cozmo no longer supported online downloading. WHAT?!?! What does this mean? This means that we can still access her logs and settings at home and email them to the doctor but they can't access then when we're there. So now what? Well, it's kind of bittersweet. We were looking to start a new pump upgrade toward the end of the school year in May/June but now this means we can push forward with the upgrade. There is a pump class coming up on January 6th. So I called to get Kacey registered for the class. Hopefully it works out and we will be able to actually put our hands on the Animas and the MiniMed. She is not interested in the OmniPod at all. I know I had asked for help before with the two pumps. Each of you loved them for different reasons and I'm so torn as to which way to go. The ultimate decision is up to Kacey and after looking at both pumps on the websites and watching the videos. She's still up in the air with her decision but I'm guessing she is going to lean toward MiniMed. I know getting the CGMS is part of the deal. She definately wants that but she doesn't want the 2 seperate devices attached to her. And with middle school in her near future and watching her conceal her pump now...I DO understand her reasoning and its her body and her decision. Also, as we watched the Animas video, it seemed like there was alot of steps to go through when bolusing and such. Is that correct or were we misunderstanding it all? (Wendy, help here! You know the boat we're in!) Kacey is all about dosing and putting her pump away quickly so she can eat or go on with the activity she is doing. When we watched the MiniMed video, it seemed like it was a shorter process.
AHHHHHH the confusion! Anyone that can offer advice with these two pumps...PLEASE HELP! If you were on one pump and you switched, do you like it? If not, why? Do you regret your switch? What are your favortite features? Your least favorite?
Ultimately we have a few favorite features with Cozmo. Our 1st fav...IOB! :) My next fav is the alerts....15 min after a low and 2 hours after a high. Kacey's pump will beep and tell her to test. This gives her the freedom to treat herself with and without help. If she was low, then it reminds her to make sure her sugar comes up in safe range and if shes high then she can retest to see if she needs another correction. I also like the alert that reminds me to change her site every 3 days. Yep, all the alerts and beeps are important for us so we need a pump that is going to do that. I don't know all the features of the two pumps so I'd love the feedback!
Also....Noah....our Endo office LOVED your blue flamingo idea and our Endo thought it was a VERY cool idea! While we were waiting in the waiting room, a very nice Christian lady asked what Kacey had in her arms? Kacey shared Deputy with her along with your letter (which we laminated) and gave her a mini lesson while we sat there. The nice lady was so impressed and she said to tell you...."Continue to do great things and you will be blessed." So we wanted to share that with you. One person educated....millions more to go! We've got more pics to upload! THANKS NOAH!!
Sunday, December 12, 2010
Starlight
On December 7, 2010, we got an email from a very nice worker named Sandi, from Starlight Children's Foundation. She was calling to let us know Kacey was accepted into the program. I was thrilled with this news! You see, Starlight has something called Great Escapes. It's a program that helps sick children and children with chronic conditions get out into the world and enjoy events that normally wouldn't be financially available for a family that struggles with financial burdens of a child with chronic illness. It gives these children a chance to meet other children that might be struggling with the same sort of illness, it gives them a chance to get away and try and put aside their daily struggles with the illness they have. It also gives Moms and Dads a chance to interact with other parents...something all of us need!
As Starlight says, "When a child is seriously ill, everyone in the family is affected." It's true! I can't tell you how many times I've had to drop what I was doing to care for Kacey. I've had to cancel plans because she couldn't function. We've had to leave places because of blood sugars. I've had to give my 100% attention to her until she comes up or down into a safe blood sugar range. I've been subbing in a classroom and they've called me out to care for Kacey or I've had to leave because she was so high that she was sick. I've lost countless hours of sleep during the night to care for her...thankfully she was able to sleep through it but then she wondered why I was a walking zombie the next day. It not only affects me and Frankie but it also affects Kayleigh as well. When Kacey is grumpy then they have those sibling fights....then God help me when Kay has PMS and Kacey has a high blood sugar....LOL! Talk about a House War! Whew! But it was hard for Kayleigh to understand WHY we had to leave places when Kacey's sugar got out of whack. Now, she DOES! But I know it used to make Kayleigh mad when we'd be having fun somewhere and Kacey would drop low and we'd have to stop so I could care for her....or she'd go high and we'd still have to stop so she could drink water with a case of the grumpies. It's hard! And thankfully Starlight KNOWS how hard it is for families and they offer a chance to have some family fun and try and set aside all the daily struggles we face.
There is a process to go through to be accepted for Great Escapes. We had to fill out an application and send it in. There are requirements for this program.
(From the site)
To be eligible for acceptance into the Great Escapes family activities program, a child must have a serious illness or a severe chronic medical condition that significantly affects their day-to-day existence. To be considered medically eligible for the program, a child must have a medical illness or condition that falls within one of the following categories:
Applicant has a life threatening medical illness Type 1 diabetes
Condition significantly restricts mobility Yep, when her blood sugars are high/low
Pain and discomfort from the condition cannot be controlled or surgically repaired Unfortunately it can't :(
Condition requires significant and ongoing medical treatment Yep, every single second, minute, hour and day of her life
Condition is progressive Yes *sigh* :(
If the condition is not progressive, it must be current
WOW! Yes, we qualify.
The GREAT news...we will be attending our first Great Escape on Saturday, December 18, 2010 for Disney on Ice in Richmond! HOW EXCITING!!! My girls have never been to Disney on Ice (yeah I know, bad Mom!) They are soooooo very excited about it! We are looking forward to a wonderful family day as well. I will be sure to post pictures!
THANK YOU STARLIGHT for such a wonderful program! I'm thrilled about getting more involved with this program and I'm looking forward to sharing it with others.
As Starlight says, "When a child is seriously ill, everyone in the family is affected." It's true! I can't tell you how many times I've had to drop what I was doing to care for Kacey. I've had to cancel plans because she couldn't function. We've had to leave places because of blood sugars. I've had to give my 100% attention to her until she comes up or down into a safe blood sugar range. I've been subbing in a classroom and they've called me out to care for Kacey or I've had to leave because she was so high that she was sick. I've lost countless hours of sleep during the night to care for her...thankfully she was able to sleep through it but then she wondered why I was a walking zombie the next day. It not only affects me and Frankie but it also affects Kayleigh as well. When Kacey is grumpy then they have those sibling fights....then God help me when Kay has PMS and Kacey has a high blood sugar....LOL! Talk about a House War! Whew! But it was hard for Kayleigh to understand WHY we had to leave places when Kacey's sugar got out of whack. Now, she DOES! But I know it used to make Kayleigh mad when we'd be having fun somewhere and Kacey would drop low and we'd have to stop so I could care for her....or she'd go high and we'd still have to stop so she could drink water with a case of the grumpies. It's hard! And thankfully Starlight KNOWS how hard it is for families and they offer a chance to have some family fun and try and set aside all the daily struggles we face.
There is a process to go through to be accepted for Great Escapes. We had to fill out an application and send it in. There are requirements for this program.
(From the site)
To be eligible for acceptance into the Great Escapes family activities program, a child must have a serious illness or a severe chronic medical condition that significantly affects their day-to-day existence. To be considered medically eligible for the program, a child must have a medical illness or condition that falls within one of the following categories:
Applicant has a life threatening medical illness Type 1 diabetes
Condition significantly restricts mobility Yep, when her blood sugars are high/low
Pain and discomfort from the condition cannot be controlled or surgically repaired Unfortunately it can't :(
Condition requires significant and ongoing medical treatment Yep, every single second, minute, hour and day of her life
Condition is progressive Yes *sigh* :(
If the condition is not progressive, it must be current
WOW! Yes, we qualify.
The GREAT news...we will be attending our first Great Escape on Saturday, December 18, 2010 for Disney on Ice in Richmond! HOW EXCITING!!! My girls have never been to Disney on Ice (yeah I know, bad Mom!) They are soooooo very excited about it! We are looking forward to a wonderful family day as well. I will be sure to post pictures!
THANK YOU STARLIGHT for such a wonderful program! I'm thrilled about getting more involved with this program and I'm looking forward to sharing it with others.
Friday, December 10, 2010
Meet Deputy
We'd like to first take the opportunity to thank Noah, The Diabetes Dude, and his family for taking the time to mail this package to us. We're so greatful to be the proud owners of one of the flock of blue flamingos that are circulating the world.
On December 8, 2010....WE WERE FLOCKED! Deputy arrived on our doorstep while Kacey was at school. When we got home and she saw who the box was from, she started to jump around like a wild monkey.
Kacey and Deputy became "instant friends". She is so excited to take him and share him with the rest of the world. His first trip will be to our Endo's office next week for Kacey's A1c and diabetes check. We're hoping to get a few great pictures to share!
Noah also threw in some pretty cool silly bands. Silly bands became a hit in our house over the summer and the girls tried to outdo their friends to find unique bands. WELL.....Noah provided us with bands that NONE of their friends have and they can only get from The Coolest Diabetes Dude around! Thankfully he sent us a few packs so Kacey is sharing them with her very best friends as she educates them more.
THANK YOU AGAIN Noah and Family for Deputy and I promise that we will continue to share pictures as he makes his journey around Virgina.
ANDDDDDDDDDDDDDDD........
For those of you that are interested...which I'm SURE you won't be ...HAHAHA... Nicole over at We Cara Lot Blog is offering a pretty cool giveaway. I'm not telling you about it here because you have to jump over there and read all about it! LOL!
On December 8, 2010....WE WERE FLOCKED! Deputy arrived on our doorstep while Kacey was at school. When we got home and she saw who the box was from, she started to jump around like a wild monkey.
Kacey and Deputy became "instant friends". She is so excited to take him and share him with the rest of the world. His first trip will be to our Endo's office next week for Kacey's A1c and diabetes check. We're hoping to get a few great pictures to share!
Noah also threw in some pretty cool silly bands. Silly bands became a hit in our house over the summer and the girls tried to outdo their friends to find unique bands. WELL.....Noah provided us with bands that NONE of their friends have and they can only get from The Coolest Diabetes Dude around! Thankfully he sent us a few packs so Kacey is sharing them with her very best friends as she educates them more.THANK YOU AGAIN Noah and Family for Deputy and I promise that we will continue to share pictures as he makes his journey around Virgina.
ANDDDDDDDDDDDDDDD........
For those of you that are interested...which I'm SURE you won't be ...HAHAHA... Nicole over at We Cara Lot Blog is offering a pretty cool giveaway. I'm not telling you about it here because you have to jump over there and read all about it! LOL!
Monday, December 6, 2010
Gut Rested (For Now!)
After many tears...a phone call to Wendy...and a drive to Walmart....I was finally able to put my Mommy gut to rest a little. I purchased the Bayer A1c Now kit. With a fingerstick, you get an A1c result in 5 minutes. I'm betting these kits are pretty accurate and if they aren't then DON'T TELL ME cuz I'm relying on this result right now to keep my insanity.
With tear filled eyes...I read the instructions carefully.
With a loud "shunk" of the lancet that came with the kit....I filled the little tube.
I then inserted the tube into the capsule and shook it for 5 seconds.
I then opened the little prep device and stuck it into the meter.
With the press of a button...the push of the little capsule...and the word RUN...it was counting down... 4:59 to 0:00
Kayleigh's result....
YESSSSSSS....BREATHEEEEEEEEEEE!!!! ~wiping tears~ 
Recheck to make sure I saw the right number through my tears. Kayleigh, Kacey, Kay's best friend and myself rejoiced with the number we saw. Once again, I'm assuming this is accurate and for $27 it's enough to give me a little peace for the holidays. Ohhh and BTW, that $27 is TWO tests! So we have an extra one on hand to do right before the Endo in January and then I can really tell you all how accurate the home test is. I'm still pissed off at the doctor for refusing the test but we'll see how things go on January 7th. We have an appointment with the Endo that day and we'll finally have some more answers (hopefully!). Thanks Wendy for being an ear for me to vent to! Love ya!!
Also...I wanted to share this....
I know someone shared it before but it's worth sharing again. GLUCOSE TAB KEYCHAINS!!! They hold 4 glucose tabs perfectly and they were only $1.24 at Walmart! Definately worth having glucose tabs within reach at all times! :) And this goes along great with Lora's giveway! Check out her BLOG for the exciting Reli-on Giveway. So now, I have one on my keys and both girls have them hooked to their purses. Perfect!
With tear filled eyes...I read the instructions carefully.
With a loud "shunk" of the lancet that came with the kit....I filled the little tube.
I then inserted the tube into the capsule and shook it for 5 seconds.
I then opened the little prep device and stuck it into the meter.
With the press of a button...the push of the little capsule...and the word RUN...it was counting down... 4:59 to 0:00
Kayleigh's result....
YESSSSSSS....BREATHEEEEEEEEEEE!!!! ~wiping tears~ Recheck to make sure I saw the right number through my tears. Kayleigh, Kacey, Kay's best friend and myself rejoiced with the number we saw. Once again, I'm assuming this is accurate and for $27 it's enough to give me a little peace for the holidays. Ohhh and BTW, that $27 is TWO tests! So we have an extra one on hand to do right before the Endo in January and then I can really tell you all how accurate the home test is. I'm still pissed off at the doctor for refusing the test but we'll see how things go on January 7th. We have an appointment with the Endo that day and we'll finally have some more answers (hopefully!). Thanks Wendy for being an ear for me to vent to! Love ya!!Also...I wanted to share this....
I know someone shared it before but it's worth sharing again. GLUCOSE TAB KEYCHAINS!!! They hold 4 glucose tabs perfectly and they were only $1.24 at Walmart! Definately worth having glucose tabs within reach at all times! :) And this goes along great with Lora's giveway! Check out her BLOG for the exciting Reli-on Giveway. So now, I have one on my keys and both girls have them hooked to their purses. Perfect!Thank you all for reading my insane ramblings. Please continue to bear with me as I try to keep my thoughts in check! Luv yas!
Screaming Mad!
I'm so mad right now that I ended up in tears on the phone with Kacey's Endo. I had called the doctor back about Kayleigh's A1c and requested a new one be done. I got a call back today telling me that the doctor that diagnosed her with Hypoglycemia said there was NO NEED for another A1c since her one from 2 years ago was NORMAL. WHATTTTTTTTTTT?!?!?! Last time I checked, things can be NORMAL one year and the next they are in TOTAL CHAOS! GRRRRRRRRRRRRRRRRRR!!!!! So I told the lady on the phone to tell her that we DID have a PPO for insurance. We WOULD be making an appointment with Kacey's Endo. We WOULD get an A1c done. And we WOULD NOT be requesting to see Dr. P anymore! THIS IS INSANE!!!!
So I called Kacey's Endo office and told them what was going on and she informed me that since it was diagnosed as Hypoglycemia then she should definately be seen by a Endo and the soonest they could get us in was January 7th. I have to get her records faxed over to the office. In the meantime, I'm gonna drive myself bonkers! :( Have any of you used the over the counter A1c tests? I'm so sick at my stomach right now!
How in the world can you diagnose someone as Hypoglycemic and then tell them you will not authorize an A1c because the one 2 years ago was normal? TWO YEARS!!!
I know I'm probably freaking out right now but geezussssssss c'mon at least give the mother some peace of mind! So if that A1c was still a 5.6% then we'd rest well and try and settle some nerves. In the meantime, I'm watching Kayleigh...her appetite increases and decreases at the drop of a hat, she ran to the bathroom more than usual, she's drinking more....and do we just call it GROWING and HORMONES with a side of an OVERPROTECTIVE MOTHER?
I'm scared! I'm mad! I'm upset! The least little thing causes me to raise an eyebrow because I'm TOO aware of what is happening!
BREATHEEEEEEE! BREATHEEEEEEEE! ~sigh~ Ummm...Can I have my cafe mocha vodka valium latte to go NOW, please!
So I called Kacey's Endo office and told them what was going on and she informed me that since it was diagnosed as Hypoglycemia then she should definately be seen by a Endo and the soonest they could get us in was January 7th. I have to get her records faxed over to the office. In the meantime, I'm gonna drive myself bonkers! :( Have any of you used the over the counter A1c tests? I'm so sick at my stomach right now!
How in the world can you diagnose someone as Hypoglycemic and then tell them you will not authorize an A1c because the one 2 years ago was normal? TWO YEARS!!!
I know I'm probably freaking out right now but geezussssssss c'mon at least give the mother some peace of mind! So if that A1c was still a 5.6% then we'd rest well and try and settle some nerves. In the meantime, I'm watching Kayleigh...her appetite increases and decreases at the drop of a hat, she ran to the bathroom more than usual, she's drinking more....and do we just call it GROWING and HORMONES with a side of an OVERPROTECTIVE MOTHER?
I'm scared! I'm mad! I'm upset! The least little thing causes me to raise an eyebrow because I'm TOO aware of what is happening!
BREATHEEEEEEE! BREATHEEEEEEEE! ~sigh~ Ummm...Can I have my cafe mocha vodka valium latte to go NOW, please!
Sunday, December 5, 2010
Slump
I'm still in a bit of a diabetes slump. I can't help but sit here and think in the back of my head that we're facing the beginning of another T1 diagnosis. Yeah, I know it's pretty dang awful to think that way but I can't help it.
Kay is still bouncing around between 50-180. Yesterday, we went to the Christmas parade and we were standing there and she said "Mom, I feel like I'm gonna throw up!" I know she's nervous and upset over going low so I told her to stop thinking about it because she was gonna make herself even more sick and she was fine because she'd had a snack already! She snapped back at me and said, "I am NOT faking it! It's NOT in my head! I'm not making myself sick on purpose!" She then walked over and sat down on a bench to test her blood sugar. The result... 77 ...ONE HOUR after eating! She ate a pack of gummies that she had stashed in her purse and looked up at me with tears in her eyes. DAMMIT! I feel so bad for her! With her lip quivering she said, "See! I told you it wasn't all in my head!" After 15 minutes she was a 164. **sigh** She seemed fine the rest of the evening. She went to bed at a 102.
On Friday, I called her doctor back. It's still eating away at my Mommy gut and I have to know if that A1c has changed any. I had them look up the last one so I knew for sure what it was...5.6% was right. So if normal is 4.5-6.0% then she was at the higher end of normal 2 YEARS ago! So for peace of mind...we're requesting it to be done again. I know, the number isn't a definate...but I'd at least know if it's gone up! Waiting is the worst part! I picked up some more glucose tabs this weekend and as I stood there, I saw the test at home A1c kit. I was sooooo close to grabbing it but I held back.
The reality of what is happening finally hit Kacey yesterday. She was riding with me to the store and she looked over at me with a concerned look on her face and said, "Mom, I don't want Sissy to have diabetes." and she busted into tears. I couldn't control my tears at that point either! I took her hand and said "I don't want her to have diabetes either and she doesn't have diabetes right now. She only has a problem with going low but if this turns into that then we BOTH know how to take care of her and I know she will need you!"
This is such an awful feeling! It's awful sitting here wondering if we're facing the same thing we do daily with Kacey. It's awful knowing that we know something is wrong. It's awful that I have to watch both of my girls live in fear because of this damn disease. It's awful that the worry is stealing my hours of sleep, it's stealing my happy days and it's absorbing my thoughts the way it did when Kacey was first diagnosed.
I keep repeating over and over....Give It To God! I spend quite a bit of time praying for others around me and I've found that lately I've neglected asking for prayers for myself. I need to keep myself strong in faith during times like this.
I just have so may unanswered questions and so many thoughts swirling through my head. We've been doing this 2.5 years now and I feel like I'm back at square one! Could it be? Can we handle it? How will we do it? If it's just hypoglycemia then why is she having some high numbers too? How high is normal? How low is normal? Do we treat the same way we do with Kacey? Do I get her an Endo appt for this? Should we seek a second opinion? Do hormones alone cause all this mess? I think I need a file box in my brain for all this stuff!!
Please bear with me while I whine, complain, cry and try and sort all these feelings!
Kay is still bouncing around between 50-180. Yesterday, we went to the Christmas parade and we were standing there and she said "Mom, I feel like I'm gonna throw up!" I know she's nervous and upset over going low so I told her to stop thinking about it because she was gonna make herself even more sick and she was fine because she'd had a snack already! She snapped back at me and said, "I am NOT faking it! It's NOT in my head! I'm not making myself sick on purpose!" She then walked over and sat down on a bench to test her blood sugar. The result... 77 ...ONE HOUR after eating! She ate a pack of gummies that she had stashed in her purse and looked up at me with tears in her eyes. DAMMIT! I feel so bad for her! With her lip quivering she said, "See! I told you it wasn't all in my head!" After 15 minutes she was a 164. **sigh** She seemed fine the rest of the evening. She went to bed at a 102.
On Friday, I called her doctor back. It's still eating away at my Mommy gut and I have to know if that A1c has changed any. I had them look up the last one so I knew for sure what it was...5.6% was right. So if normal is 4.5-6.0% then she was at the higher end of normal 2 YEARS ago! So for peace of mind...we're requesting it to be done again. I know, the number isn't a definate...but I'd at least know if it's gone up! Waiting is the worst part! I picked up some more glucose tabs this weekend and as I stood there, I saw the test at home A1c kit. I was sooooo close to grabbing it but I held back.
The reality of what is happening finally hit Kacey yesterday. She was riding with me to the store and she looked over at me with a concerned look on her face and said, "Mom, I don't want Sissy to have diabetes." and she busted into tears. I couldn't control my tears at that point either! I took her hand and said "I don't want her to have diabetes either and she doesn't have diabetes right now. She only has a problem with going low but if this turns into that then we BOTH know how to take care of her and I know she will need you!"
This is such an awful feeling! It's awful sitting here wondering if we're facing the same thing we do daily with Kacey. It's awful knowing that we know something is wrong. It's awful that I have to watch both of my girls live in fear because of this damn disease. It's awful that the worry is stealing my hours of sleep, it's stealing my happy days and it's absorbing my thoughts the way it did when Kacey was first diagnosed.
I keep repeating over and over....Give It To God! I spend quite a bit of time praying for others around me and I've found that lately I've neglected asking for prayers for myself. I need to keep myself strong in faith during times like this.
I just have so may unanswered questions and so many thoughts swirling through my head. We've been doing this 2.5 years now and I feel like I'm back at square one! Could it be? Can we handle it? How will we do it? If it's just hypoglycemia then why is she having some high numbers too? How high is normal? How low is normal? Do we treat the same way we do with Kacey? Do I get her an Endo appt for this? Should we seek a second opinion? Do hormones alone cause all this mess? I think I need a file box in my brain for all this stuff!!
Please bear with me while I whine, complain, cry and try and sort all these feelings!
Thursday, December 2, 2010
We Have A Diagnosis
I'm still sitting here in a bit of a funk. I've gained so many new gray hairs the last 24 hours that I'm going to have to start passing them off as a new trend...platinum highlights! I wonder if that will fly?
So I guess I need to back up...
Over the last few months, Kayleigh has had what we've called the "mystery illness". I blogged a while back about her showing some high blood sugars mixed with some lows. She showed "diabetes symptoms" but never all at once. Sweats. Headaches. Stomach aches. Shakes. Hunger. Exhaustion. Thirst. Yes, my friends, as a D-Mom, my Mommy gut was in full force and it was making me sick to think that I could possibly have another D-child on my hands. So over the last few months, as the symptoms showed themselves, I was armed with a handy dandy glucose meter. The meter confirmed the symptoms...lowest low of 56 and highest high of 182. The doctor passed it off and said it was "hormones". Hmmm...ok but NOT what I wanted to hear cuz I knew SOMETHING was wrong. So we've just kinda dealt with it....UNTIL YESTERDAY!
Kayleigh woke up yesterday morning, not feeling very well. She said her stomach hurt but she went on to school. Somewhere near 1pm, I got a text. "Mom, I'm really sick and I want to go home." Now, Kayleigh is NOT my sick complainer. If shes complains that shes sick, shes REALLY sick! So I told her to call her Daddy since he was home on his day off. She called him and he headed to school to get her....BUT before he could get there something MAJOR happened! She was in culinary class and she said she wasn't feeling right so she told her teacher that she felt sick. He told her to sit down for a minute and she'd be ok. She got back up and she said everything started to get dark and her hearing was muffled. She managed to tell her teacher she felt like she was going to pass out and he guided her to a chair before she fell out. They called for the nurse who ran down with a wheelchair and whisked her back to the nurses office. Kay was feeling dizzy and she gets motion sick so as soon as she got into the clinic, she puked all over the trash can. Her blood pressure was 76/50 and she was GRAY! Yes, her face was white and her lips had NO color! When Daddy got there, she was still shaking but she'd gotten a little color back. Of course, all of this happens on a day that I had to substitute in the office and I was in a panic because I couldn't leave to get to my baby! :( Frankie called me and said she was doing ok and he was taking her home to lay down. When I finally got home, she was able to explain what all had happened and she cried because it really scared her. THATS IT!! Momma bear came out in me because I KNOW there is something wrong and I'm not stopping til we KNOW what it is!
This morning, I called the doctor and got her an appointment. This time we got to see the other new doctor and she looked over Kay's past records and when she came in, she said from what she read and everything that happened yesterday, she could tell us 99% of what she thought it was before even talking to us. HYPOGLYCEMIA. I felt by body sink in the chair and the vomit feeling overcame my tummy. She began to explain everything to us and after yesterday, Kay showed every classic symptom. I stopped her midsentence and explained I already had a child with Type 1 diabetes. She went on to explain the difference. DIFFERENCE? A low is a low, right? Not in this case...Kays pancrease is producing too much insulin...it works...but it's in overdrive. Ahhhhhhh! OK...LET. THIS. SINK. IN. You're telling me...I have a child that produces NO insulin and one that prodices TOO MUCH insulin? She smiled, yes that basically it. Ummmm please excuse me while I vomit and cry out! WTF?!?!?! I'm still sitting in this state of shock. I KNEW something was wrong...I SAW the symptoms....I TOLD the doc her symptoms and yet it took ANOTHER doc and her on the brink of passing out to really see it! So I sat there holding back my tears because I didn't want to scare Kayleigh. My next question to the doctor...NOW WHAT? What do we do? Can we fix it? Can we make it go away? Can we cure it? (choking tears) Basically, the only thing we can do is make sure shes eating every 4 hours...being sure that shes getting the protein to keep her blood sugar up and steady. She needs to carry snacks and glucose tabs (or something sweet) with her at school along with the note they've written giving her permission to have the snacks anytime. We can fix it by making sure she eats properly. No, we can't make it go away. And then she went on to explain that if her pancreas stays in overdrive like it's doing then later on in life she is more at risk for Type 2 diabetes because her pancreas is eventually going to decide to putter out. As you can probably imagine...my next question was...CAN this turn into a Type 1? She assured me that it probably would NOT but she was much more at risk for something like that because of this diagnosis. AT RISK? So now what? I know whats gonna happen...I'm gonna spend my days worrying like I do with Kacey. I deal with Kacey's high much better that I do the lows...WHY? Well for the exact reason that happened yesterday...PASSING OUT or UNCONSIOUSNESS! Thats my biggest Mommy fear! :( So then the doctor said that since we had all the "equipment" for glucose testing then I could do the test on her that they'd do at the hospital. She said she doesn't like to use it as a tool in determining hypoglycemia because so many factors can throw it off but if I wanted to try it then I could. She needed to drink 50g of sugar (OJ was best) and then test her 30min, 1 hour and 2 hours later. She said if she was under 80 at any point then stop the test and eat. So we have to wait for a fasting and then do the test.
Now...Kayleigh fears...
She expressed some concern after we left the doctor along with some tears. She's scared! She's scared of diabetes. She's scared to go low again. She's scared of how nearly passing out made her feel. She's scared someone around her might not know she is having trouble. I'm watching my 16 year old daughter put herself in her sister's shoes and it makes me soooo sad! :( She already has asthma and that in itself is scary enough and she's old enough to remember some of the severe asthma attacks that she has had. She said this doesn't even begin to compare with the fear she felt. She said she felt like she was dying and she was scared she wasn't going to wake up if she closed her eyes. So now what? I've talked to her, explained that as long as she eats she should be ok, but how do you REALLY make them feel calm after such a scary episode? She even went on to ask me if we could get her an alert bracelet with "Asthma & Hypoglycemia" on it so if she passed out then someone would know why. I also told her that we had enough test kits laying around that she could throw one in her purse and when she felt "weird" then she could test and she could know for sure if she was going low and treat herself just like Kacey does. She cried and all I could do was hold her :( It's another time in my life that no matter what I said or did, I still can't take away the hurt and fear. I HATE THIS!!!!
I'm so sad! I'm so mad! I'm an emotional basketcase inside and I can't cry out loud because I'm scared that it will worry Kayleigh even more. I'm not worried about treating her because I'm already a pro at treating lows but I'm just upset that we have to deal with this. I am thankful that we do know whats been making her feel so bad and we can treat it as best as we can.
Guess thats all. I'm gonna try my best to keep from sinking in the funky mess.
So I guess I need to back up...
Over the last few months, Kayleigh has had what we've called the "mystery illness". I blogged a while back about her showing some high blood sugars mixed with some lows. She showed "diabetes symptoms" but never all at once. Sweats. Headaches. Stomach aches. Shakes. Hunger. Exhaustion. Thirst. Yes, my friends, as a D-Mom, my Mommy gut was in full force and it was making me sick to think that I could possibly have another D-child on my hands. So over the last few months, as the symptoms showed themselves, I was armed with a handy dandy glucose meter. The meter confirmed the symptoms...lowest low of 56 and highest high of 182. The doctor passed it off and said it was "hormones". Hmmm...ok but NOT what I wanted to hear cuz I knew SOMETHING was wrong. So we've just kinda dealt with it....UNTIL YESTERDAY!
Kayleigh woke up yesterday morning, not feeling very well. She said her stomach hurt but she went on to school. Somewhere near 1pm, I got a text. "Mom, I'm really sick and I want to go home." Now, Kayleigh is NOT my sick complainer. If shes complains that shes sick, shes REALLY sick! So I told her to call her Daddy since he was home on his day off. She called him and he headed to school to get her....BUT before he could get there something MAJOR happened! She was in culinary class and she said she wasn't feeling right so she told her teacher that she felt sick. He told her to sit down for a minute and she'd be ok. She got back up and she said everything started to get dark and her hearing was muffled. She managed to tell her teacher she felt like she was going to pass out and he guided her to a chair before she fell out. They called for the nurse who ran down with a wheelchair and whisked her back to the nurses office. Kay was feeling dizzy and she gets motion sick so as soon as she got into the clinic, she puked all over the trash can. Her blood pressure was 76/50 and she was GRAY! Yes, her face was white and her lips had NO color! When Daddy got there, she was still shaking but she'd gotten a little color back. Of course, all of this happens on a day that I had to substitute in the office and I was in a panic because I couldn't leave to get to my baby! :( Frankie called me and said she was doing ok and he was taking her home to lay down. When I finally got home, she was able to explain what all had happened and she cried because it really scared her. THATS IT!! Momma bear came out in me because I KNOW there is something wrong and I'm not stopping til we KNOW what it is!
This morning, I called the doctor and got her an appointment. This time we got to see the other new doctor and she looked over Kay's past records and when she came in, she said from what she read and everything that happened yesterday, she could tell us 99% of what she thought it was before even talking to us. HYPOGLYCEMIA. I felt by body sink in the chair and the vomit feeling overcame my tummy. She began to explain everything to us and after yesterday, Kay showed every classic symptom. I stopped her midsentence and explained I already had a child with Type 1 diabetes. She went on to explain the difference. DIFFERENCE? A low is a low, right? Not in this case...Kays pancrease is producing too much insulin...it works...but it's in overdrive. Ahhhhhhh! OK...LET. THIS. SINK. IN. You're telling me...I have a child that produces NO insulin and one that prodices TOO MUCH insulin? She smiled, yes that basically it. Ummmm please excuse me while I vomit and cry out! WTF?!?!?! I'm still sitting in this state of shock. I KNEW something was wrong...I SAW the symptoms....I TOLD the doc her symptoms and yet it took ANOTHER doc and her on the brink of passing out to really see it! So I sat there holding back my tears because I didn't want to scare Kayleigh. My next question to the doctor...NOW WHAT? What do we do? Can we fix it? Can we make it go away? Can we cure it? (choking tears) Basically, the only thing we can do is make sure shes eating every 4 hours...being sure that shes getting the protein to keep her blood sugar up and steady. She needs to carry snacks and glucose tabs (or something sweet) with her at school along with the note they've written giving her permission to have the snacks anytime. We can fix it by making sure she eats properly. No, we can't make it go away. And then she went on to explain that if her pancreas stays in overdrive like it's doing then later on in life she is more at risk for Type 2 diabetes because her pancreas is eventually going to decide to putter out. As you can probably imagine...my next question was...CAN this turn into a Type 1? She assured me that it probably would NOT but she was much more at risk for something like that because of this diagnosis. AT RISK? So now what? I know whats gonna happen...I'm gonna spend my days worrying like I do with Kacey. I deal with Kacey's high much better that I do the lows...WHY? Well for the exact reason that happened yesterday...PASSING OUT or UNCONSIOUSNESS! Thats my biggest Mommy fear! :( So then the doctor said that since we had all the "equipment" for glucose testing then I could do the test on her that they'd do at the hospital. She said she doesn't like to use it as a tool in determining hypoglycemia because so many factors can throw it off but if I wanted to try it then I could. She needed to drink 50g of sugar (OJ was best) and then test her 30min, 1 hour and 2 hours later. She said if she was under 80 at any point then stop the test and eat. So we have to wait for a fasting and then do the test.
Now...Kayleigh fears...
She expressed some concern after we left the doctor along with some tears. She's scared! She's scared of diabetes. She's scared to go low again. She's scared of how nearly passing out made her feel. She's scared someone around her might not know she is having trouble. I'm watching my 16 year old daughter put herself in her sister's shoes and it makes me soooo sad! :( She already has asthma and that in itself is scary enough and she's old enough to remember some of the severe asthma attacks that she has had. She said this doesn't even begin to compare with the fear she felt. She said she felt like she was dying and she was scared she wasn't going to wake up if she closed her eyes. So now what? I've talked to her, explained that as long as she eats she should be ok, but how do you REALLY make them feel calm after such a scary episode? She even went on to ask me if we could get her an alert bracelet with "Asthma & Hypoglycemia" on it so if she passed out then someone would know why. I also told her that we had enough test kits laying around that she could throw one in her purse and when she felt "weird" then she could test and she could know for sure if she was going low and treat herself just like Kacey does. She cried and all I could do was hold her :( It's another time in my life that no matter what I said or did, I still can't take away the hurt and fear. I HATE THIS!!!!
I'm so sad! I'm so mad! I'm an emotional basketcase inside and I can't cry out loud because I'm scared that it will worry Kayleigh even more. I'm not worried about treating her because I'm already a pro at treating lows but I'm just upset that we have to deal with this. I am thankful that we do know whats been making her feel so bad and we can treat it as best as we can.
Guess thats all. I'm gonna try my best to keep from sinking in the funky mess.
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