HUGE STEP!!!

Ellee tends to go in spurts of independence.  The last few days has been one of those times. When I get ready to do her shot, she wants to put the needle on and dial up the units.  No big deal, the needle is protected until we remove two caps and she has me check to make sure she put it on the right number since there are half unit markings.  This morning, however, it was different!

We were running ahead of time for the bus and I got her pen out to give her a breakfast shot while she was getting her shoes one.  Since she has been wanting to prep the pen the last few days I asked if she wanted to do it.  "YES!" and quick dart over to me at the computer desk was her response! While I was filling out her log and running the numbers through my head to double check my calculations came the obvious question: "How many?"  "Let's do 4 units."

I checked the pen to make sure she had it on 4 and not 4 1/2 and she tells me "I want to do it MYSELF!" Since she had already dialed the pen in, I had to ask if that meant what I thought it meant.  "You want to give yourself the shot?"  "YES" she said in her goofy, over-excited voice that she does when she is very excited about something! 

I was flabergasted for a few seconds.  So many thoughts ran through my head but one was louder than the rest: She will have to do it herself eventually! 

I told her that she had to do it in her leg, so she picked a leg and found a fatty area.  Next I showed her how to hold the pen so that she could push the end of it to inject the insulin.  Once she held it in her hand correctly and I could see she had good thumb range, it dawned on me that the way it "ratchets" may throw her off. I told her to take both caps off with the other hand and we did an "air shot".  She laughed to see the insulin stream out and was anxious to do the shot!

Ellee amazes me.  She takes things in stride that would freak most people out!  I am constantly thankful for her personality because that is one thing that makes dealing with T1D easier that it should be!  After she did her injection, she had this look on her face of accomplishment!  She was *so* proud of herself and had a beaming smile!  She even counted to 20 because I tried to take a picture but forgot that I had a different lens on and it wouldn't focus. 

I was hesitant to post the original image, but decided on this cropped version of it.  I think it signifies so much... those little hands have seen and held so much in almost 6 years that I have held them in my own hands. 

Progress!

One of the downfalls of injecting insulin is that you have to rotate injection sites because the fat breaks down from the insulin.  We have 4 areas of the body that we can inject into: Upper Arms, Upper Thighs, Buttocks, and Stomach. 

From the very beginning, Josh and I agreed instantly that we refuse to consider injecting into her stomach.  Ellee doesn't have enough fat there (which I am VERY jealous of!). I also feel that since that is the only place that you are suppose to put ports when on a pump, I don't want to break that area down any sooner than we have to.  And El threw a fit every time we suggested her butt, so it's always been between Arms and Thighs. Is she had her way, we would only use her arms!

We are constantly asking her to let us try a shot in her butt and she throws a fit and starts bawling at the mention of it!  One of the advantages of the Novo Jr pen that we are using is that they have varying lengths of needles.  Our recent 3 month supply is "Nano" needles - only 5/32" instead of 5/16" of a standard "short needle" syringe!  We bargained with Ellee to allow us to try a shot in the butt once we get the shorter needles.  She was reluctant, but agreed.

Josh had the girls for a few days and sent me a message saying "two nights in a row!" and I knew exactly what he meant!  Tonight after dinner, I dosed the pen and called her into the room.  She knows the routine and when ever possible we inject in the thighs unless we are in public and she has pants on.  I pick my battles and try to let her decide where the injection will be.  If I don't like that area then I suggest we do something else and although it may be reluctant, she's switch sites.  Tonight, when she saw the pen she started to undo her pants so that we could do a thigh.  She stops suddenly and looks at me "why don't we do my butt?!  It doesn't hurt as bad as I thought it would!" 

FINALLY!!!  Progress!!  Another site to alternate between to allow the fat to rebuild to prevent lumps!  It's a step closer to controlling this disease and not letting this disease control us!

One Step Forward

Over the past year and a half, we have learned that when Ellee's sugars are either high or low, it effects her moods.  I have learned the hard way that if she is being difficult or defiant, that we need to stop and check her sugar before I punish her for something that she can't control.

After a severe low about a month ago, as recommended by the doctors, I sat her down and talked to her about how her body felt during that the low.  I explained that when she feels funny like that, she needs to tell us that she doesn't feel good and we need to check her sugar because it's out of whack.  I can't really expect a 5 year old to understand what is going on with their body and why it makes them feel the way it does, but we agree with the doctors that she needs to start recognizing her lows.

Both Ellee and her sister have a habit of coming into my room wanting to sleep in my bed in the middle of the night!  They both have electric blankets now so I know it's not because my bed is warm!  And since our recent move into Grandma & Grandpa's old house, I am more alert when I hear them get up in the middle of the night.  Most of the time I make sure that they find their way back to the bedroom from the bathroom.  The other morning around 4am I heard El get up and she walk into my room.  She has a been known to sleep walk, so I asked her to go in and go potty before she could get in my bed. She did and came back instead of going back to her bed so I asked what was wrong. 

"I can't sleep"
"Why not"
"I don't know, I just can't.  Mommy, I don't feel good, I think I'm high."

When ever we have a reading that is either higher or lower than her range, my mind instantly replays the last meal and I recalculate the carbs to make sure I dosed her correctly.  I didn't think she was high, let alone high enough to make her feel funny, but it would be possible that she was low.  No matter the case, she said that she thinks her sugar is out of whack, so I am up instantly to check.

Sitting at the kitchen table waiting for the meter to beep: 60.  The low end of her range is 90, so she was definitely low.  A quick look around the kitchen for something small that will bring her up fast and I found fruit snacks!  I had mixed feelings as I watched her eat her snack.  The brief thought of what would have happened had she not woke up and said something, but that was quickly overcome by the more optimistic thought that she is finally starting to recognize her lows!  She may not know the difference between being high or low, but I am happy (and thankful) that she is starting to realize that something is wrong and we need to check it!  One step forward in dealing with this unfortunate disease!

How Low?

When we were at Childrens' after Ellee was diagnosed, one of the things they had to teach us was how to administer Glucagon in the case she goes unresponsive during an extreme Hypo.  I'm not sure how their bodies actually act during an unresponsive state, but I picture convulsions and something like a seizure.  And the thought of having to hold her still enough to get the extremely large needle of the Glucagon while she is shaking scares the crap out of me.  Every once in a while, Josh or I are asked (or we ask ourselves) how low does she have to get to go unresponsive? This is the first thing we asked the nurse in the hospital.  Like many things in the world of T1D, there is no clear cut answer - unfortunately.  Everybody's body is different. 

Last night, I found out the hard way that El can go as low as 35 without being unresponsive. (Her ideal range is 90-180.)  I do not like lows, but I also don't like her being high.  We have not had a hypo in the past two months since she fractured her wrist and after the consistent highs and a horrible A1C a few weeks ago, this is a positive sign that her body is functioning and reacting to the new NovoLog that were we switched to. 

Yesterday was Ellee's follow up appointment for her fractured wrist and Dr. P cleared her of all restrictions do to her gaining back full range of motion!  I can't explain how painful these last two weeks were for her to not be able to play on the slide or monkey bars!  After meeting with Dr. P, we went eye glass shopping and ordered her a new pair of glasses!  Then off to school.

After Ellee got off the bus, I took the girls to the grocery store to help decide what to make for dinner.  They didn't care about dinner but asked for a banana for a breakfast, but it quickly turned into a beg to have them for their afternoon snack.  While I was cooking dinner, they had their snack.  I did check Ellee before and she was around 100 (yay!).  Since she was on the low end, I ad it to her dinner shot.  The girls played after dinner while I cleaned the kitchen. When they started fighting and getting cranky, I decided it was bath time.  

When I declared bath time, Ellee actually fought me about it by throwing a fit and refusing.  It was unlike her which ticked me off so voices were raised and I told her she can go straight to bed.  I walked away to get the bath started for Dani and El followed us up. When I told her to get undressed and get in, she started whining that she wanted a drink.  I was about to lose it when she said she didn't want water but took a drink anyways and complained, but it dawned on me... HER SUGAR!  I was certain that she couldn't be low, but maybe she was really high.  When I came back into the bathroom with her meter, she was in the bathtub and obviously had no energy to do anything.  When her meter beeped with 35 on the screen, it was an instant panic.  We were at Daddy's house so I did a mad dash downstairs, frantically looked for something for her to ingest, then back up the stairs. It was a relief to see her coming back to life as she drank the juice.  At that point, the main goal is to keep her from going any lower and going unresponsive.

Lesson for Mom: check her when she starts getting mouthy, overly whinny, or defiant.  Lesson for Ellee: when you don't feel good like that, tell me that you don't feel good so that I can check your sugar.  We had a talk after she got her jammies on about how she felt and how that was an indication that her sugar wasn't right.  We've been a T1D family for 19 months and we all have so much that we still need to learn.

Touching Video

BiG Blue Test


Watch this video, it came across my Facebook the other day. I found it very touching to see how people with T1D do not put their life on hold because of all the extra steps we have to go through on a daily basis.  I couldn't help but tear up at the end when they go back through and show everyone with their finger in the air.  It reminds me of little Ellee's fingers... All the little scars from testing. And to think that she is only a year and a half into this and has a life time ahead of her.

Doctor Appointments

After the horrible incident we had with Dr O (to whom we were referred to by our Pedi) I decided that I should followed my original gut feeling to go to OIO.  We were able to get Dr. P to see her (since we had already gone to another doctor) and I honestly can't say enough good things about this guy!  He was wonderful, very personable, explained very clearly what happened, and even spelled out a game plan for us.  None of which the other doctor did.  We were disappointed to learn that even though Ellee doesn't have to wear the brace anymore, she still can not participate in "rough activities", including soccer, the playground, & gym.   Major bummer. =(  It's hard to get a 5 year old to stay off a playground, even harder when she doesn't have a brace on to remind her of why she can't!

Soccer season is over, for all of the 3 weeks that Ellee got to participate in!  Both girls have been talking about dancing.  This fall, a lady has opened a dance studio in town that offers ballet.  I spoke with her last week about starting the girls and we decided to start them on Monday to see how they like it!  I completely forgot about Ellee's Endo appointment Monday afternoon but hoped that we could get back in time for it.

I usually dread going to the Endo.  I think it's because T1D only progressively gets worse, never better, and the appointments only seem to remind me that it's all downhill.  A positive is that our Endo lets us make our own judgment calls, especially if she is consistently high or has more than one or two lows, we can adjust without having to play phone tag with them.  We have had our hands slapped for making an adjustment we didn't know we weren't suppose to make! 

Monday we had our first afternoon appointment which works out better because Ellee doesn't miss as much school.  She was only missing 2 hours, as opposed to 3-4.  Josh and I have been discussing her numbers ever since she started school, soccer, & broke her wrist.  We have had so many factors thrown together all at once that we really had no idea what the cause is to figure out how to bring her down.  We knew that the only logical thing to do was to adjust her insulin to carb ratio and see where that goes. 

There was a new Diabetes Nurse Educator that came in and spoke with us and went over all the factors that we need to look at.  I couldn't help but notice the medical alert bracelet she wore on her wrist.  When we got done, I asked if she was new to the office/Childrens Hospital Network.  I normally don't ask things like that, but I was very impressed with her professionalism and her knowledge, and most importantly - her understanding.  She explained that she just started with Childrens after working at OSU for many years, and has been T1D since the age of 3!  As much as I'd like to find an Endo that is local, I am more than happy to make the drive to Dublin and Columbus for that reason - their employees have first hand knowledge of what we are going through, and that makes all the difference in the world to us!  The compassion and understanding outweigh all of the textbook knowledge when it comes to dealing with the T1 Monster. 

The outcome of everything is that we are going to adjust her insulin:carb ratio and see what happens from there.  We already accepted the fact that we *know* that Ellee is coming out of her honeymoon period so it was easier to take when the doctor mentioned it.  It was 4:15 when we got out of the office and even if I rushed home, it would be hard to make it in time for ballet class, so I called and explained and we agreed to start next week.  I am already seeing a change in Ellee's numbers and will know even more once I see the school nurse's log on Friday.  I am so anxious to see how dance class goes next Monday!

Broken Arm

One of the last things I expected at 6:30pm on a Sunday night was to getting a phone call that my daughter broke her arm and is being taken to the hospital.  I know how I was with a sprained wrist in school and with a broken leg a few years ago, and I felt like my kids weren't old enough to go through this yet!  I'm not ready to go through this yet! 

While playing with her cousin at her Uncle's house, she tripped over a ball and put her hands down to break her fall.  In the process, the impact on her wrists "buckled" the large bone in her right wrist.  Urgent Care did x-rays and sent her home in a splint for her Pediatrician to make the call on whether in needs a cast or not.  The next day the Pedi referred us to an Ortho.  My mistake was going with that referral instead of going to the Ortho who worked on my leg. I did NOT like this doctor.  I was impressed that I could understand his English, but he lacked people skills, especially child skills.  Although his prognosis is better than I expected - 3 weeks in a brace/splint sure beats 6 weeks in a cast!  I did break Ellee's heart to hear that she couldn't play on the playground, and especially no monkey bars! 


The first week and a half break from soccer didn't bother her much, but now she's ready to get back out there and play!  She has done good about not kicking the ball in the house, but the other day she wanted to play so bad that she was kicking around in the kitchen!  Her break from soccer couldn't come at a worse time, she was doing so good and really getting into playing!