May 29, 2010

My Big Sister, My Hero




Jessi is 4 years old.

Ally is her big sister and her hero! Sure they fight like cats and dogs, but in the end they are best friends. I hear them tell each other that and it melts my heart.

Just today I overheard Jessi saying, "Ally, you are my bestest friend."
And on another recent day I heard Ally, "Hey, Jessi, Do you want to play best friends?" I'm not sure what 'play' best friends is exactly, but I love it anyway.

Jessi looks up to her big sister; she wants to be just like her. I have known this for a long time. That's what little sisters do right? I know that I have looked up to my big sister my whole life. (Although there is no need to go telling her that and giving her a big head or anything!)

Well, when I say Jessi wants to be JUST like her sister, I mean it. Today she came out wearing one of Ally's pump pouches. She had some sort of little video game in there as her makeshift pump. She had also packed a little backpack. Contents of the backpack sure did resemble Ally's diabetes bag. Meter (we had an old one in their toy doctor kit)-check, notebook for recording her BG-check, and don't forget the Smarties for treating low blood sugar-check! She had separated the smarties by color. I overheard her saying that if she was high she needed to eat the yellow ones, but if she was low she needed to eat the pink ones. Hmmmm....guess we still have some educating to do here, good thing she is my non-D kiddo!! She even wore the pump pouch when we went out to dinner last night and played the part by "checking her sugar" before we ate, asking Daddy how many carbs her dinner was, and pretending to enter it into her pump. It was so cute.

(While this was cute, I am thankful that she is not JUST like Ally and I pray that she will never need to copy Ally's routine.)

And I think Ally loved every minute of it! Was it because she felt important? Or maybe loved? Or was it because she felt comfort? In the restaurant I watched Ally as Jessi was pretending to check her sugar. She was beaming. It made me wonder....was she happy because her little sister thinks she is so cool and wanted to be just like her? Or was she ultimately happy because someone else was like her - She was not the only one checking her sugar before dinner. I think it was the latter.

A few weeks ago Ally told me that Jessi said she wished she had diabetes too. Then Ally said, "I kind of wish she did too." I gasped! Oh no, honey, we don't! But then as she was talking to me about it, I realized that she just wanted to be like everybody else...like ANYbody else! She feels different in our house. She feels different in her classroom. She feels different around her cousins, her friends. She IS different everywhere she goes. I take this for granted.

Thanks to Jessi, for making her feel a little less different today!

May 10, 2010

A Day in the Life

This is "Diabetes Blog Week." Each day features a new topic - today is "A Day in the Life." So here it goes....

For other parents of children with Diabetes, this will look very familiar. And for my other friends, maybe not so much!

On school days...

7 AM Ally wakes up, gets dressed, chooses her pump pouch for carrying her isulin pump, checks her BG, records it in the log book. Breakfast: measure out a cup of cereal (this is usually her breakfast of choice), also measure milk, 1/2 cup of apple juice, 1/2 cup of fruit. If we stick to the regular breakfast I know the carb count in my head. If she decides to be adventurous, well then its back to counting for me! And really to be fair, my wonderful husband, Keith, mostly gets breakfast ready on school days :)
Next, she enters the amount of carbs for her breakfast into her insulin pump, which wonderfully calculates her insulin bolus (and correction, if her blood sugar is higher than 130) and then delivers the appropriate amount of insulin to her. Again, record this information in her log book. Meanwhile, I am packing her lunch (measuring, counting carbs, writing an index card with each item listed and amount of carbs for the school nurse) and her snack for the day.

8 AM Ally heads out for the school bus. (I hold my breath for 45 minutes and hope that she is feeling ok on the bus, because who knows if anyone would even notice if she wasn't!)

10:50 AM Ally goes to the clinic at school to check her BG before lunch. Her supplies (blood glucose meter with alcohol swabs and test strips) for checking her BG are kept in the clinic. She takes along her lunchbox, inside is the card where I have listed each item in her lunch and the number of carbs. If her BG is above 70, and with the most wonderful school nurse ever! looking over her shoulder, she enters the number of carbs for her lunch into her insulin pump. The pump will again wonderfully and magically calculate the amount of insulin necessary for that amount of carbs (plus any insulin needed to correct a BG over 130) and deliver the insulin to her. Off to the cafeteria she goes, eats her lunch - hopefully all of it!, and then to the playground for some much needed exercise! If she was not able to finish all of her food, back to the clinic it is so that the nurse can calculate how many carbs she did not eat (but already received insulin for) and give her glucose tablets or juice to make up for the carbs she did not eat.

But if her BG is less than 70, she needs to drink a juice box (a fast acting carb to raise her blood sugar). If this is the case, she then sits in the clinic (while all of her friends are eating lunch by now!) and waits 15 minutes to recheck her BG, making sure that it is above 70 before having the pump give her any more insulin. Hopefully, it is back up and off to the cafeteria she goes to join her friends! She must eat quickly now if she wants to make it to the playground in enough time to play.

11 AM I am watching the clock, wondering if I will get a call from the nurse. (She calls me if Ally is really high, really low or if she has more than 2 high/low numbers during the day.)

11:10 AM I breathe a litte sigh of relief...everything must be going ok today:)

1:40 PM Ally goes back to the clinic to check her BG before the class has a snack. If she is lucky, her BG will be within a good range (70-130) and she quickly enters the carbs for her snack into her pump, receives the insulin, records her numbers on her school log and heads back to the classroom to enjoy her snack with her friends. Unfortunately that is not how it always goes...again, if she is lower than 70, she will need to have a juice box, sit and wait for 15 minutes to recheck. Then she can bolus (give herself insulin) for the carbs in her snack, but now she will eat her snack alone because the class has surely finished theirs by now! :( Those days make me feel sad for her :(

3:00 PM Ally goes back o the clinic to check her BG (are you seeing a trend here?). She checks at this time of day because it is right after the class gets back from PE class or has afternoon recess. Also this is a good time to check because they will get out of school at 3:30 and we like to make sure that her numbers are in a good range before getting on the bus. Because it is a 45 minute bus ride, I like for her BG to be above 100. So, if her BG is less than 100 she gets a juice box, waits 15 minutes to recheck, and then can go home on the bus. If she does not come up above 100, even with the juice box, the nurse calls me and I go to school to pick her up. (That is, after I wake up my other two kids from their nap and throw them in the car!)

4:10 PM Ally is home! I breathe a little sigh of relief. But then we shift into another gear. First, I look at her log sheet from school, which lists all of her numbers for the day. I transfer those numbers into her log book. I am obsessive about this! If she forgets to bring the slip home, I am really annoyed. But its ok because I can recall the information from her pump, just takes me longer. I rely on these numbers to get the whole picture because I am constantly adjusting her carb to insulin ratio (amount of insulin she gets per carb - and this changes for different times of the day) and also her basal rate (like an insulin drip that she gets throughout the day, not related to the carbs she eats).

Then if it is swimming or piano night, we check BG, have a quick snack, bolus for the snack, record numbers, do homework then head off. But wait! Don't forget to grab the "Diabetes to go bag!" This bag includes (but is not limited to!) blood glucose meter with alcohol swabs, test strips, extra batteries for pump and meter, "plug" for disconnecting the pump, log book, juice boxes and candy for treating low blood sugar, snacks, glucagon for emergencies, Calorie King book for help with counting carbs, etc.) On swimming days, she suspends her pump (meaning that it is not delivering any insulin) and takes it off, plugging the infusion set/cannula that stays in her body. She swims for 30 minutes; I watch her like a hawk to make sure that she is not excessively tired. After swimming and rinsing off in the shower, we re-attach her pump and resume its normal function. Check BG to make sure that she has not dropped too low after exercising. For Ally, the after exercise low tends to happen about 12 hours later though.

Other days, if she plays outside, I "check in" with her every 45 min to 1 hour to "see" how she is doing. She still does not recognize her lows, so I have to make a judgement call based on her behavior and her "look". Do we need to check your sugar? I often ask her. She ALWAYS tells me no! If she has been playing hard for a while, or if I suspect somethings going on, we check her BG. If she is low, we treat with a juice box or a snack.

6 PM Dinner. Again, we measure food, count carbs, check BG, enter carbs into pump, tell pump to bolus for the carbs, record info in log book, AND EAT. But don't forget, if her BG was less than 70, we have to treat the low with a fast acting carb before we can give her the insulin for her dinner. If she does not finish her food, we have to give her some glucose tabs or juice to make up for the carbs that she did not eat (which we already bolused for).

7 PM Site Change. On site change nights (every 3rd day), we put EMLA cream (for numbing the site) on Ally's bum and wait 45 minutes. While we wait, I rewind her pump, remove the old reservoir (which holds insulin)from her pump, fill a new reservoir with enough insulin to get her through the next 3 days, and prime the pump. After 45 minutes, we insert a new infusion set. (This is a tubing system that connects her to the insulin pump. It allows the insulin to be delivered under the skin through a subcutaneous cannula that is inserted in fat tissue.)

8 PM Bath and Bedtime. Ally suspends her pump, plugs the insusion set/cannula, takes a bath (not too long - it will make her BG rise; but not too short - don't want stinky feet!). After the bath, she re-attaches her pump and tells it to resume normal function. Most often, she switches to her comfy bedtime pump pouch that we got from TooSweet Boutique. http://www.etsy.com/shop/toosweetconfections.net

10-11 PM I head for bed. And yes, I wonder why I didn't go to bed sooner. Keith or I check Ally's BG before we go to bed. At night, we like her BG to be above 100 to make sure that she does not drop too low while sleeping. If she is less than 70, we give her a juice box, wait 15 minutes and recheck. If she is hanging out in that 90-100 range, it is decision time. Do we give her a full juice? That is a question that my husband and I say to each other all the time! If we give her a full juice box (15 carbs), I will sleep better knowing that she probably won't go low, but will it make her spike too high? So we make a decision, give her juice if needed and head to bed for a little nap! One of us wakes up about 3 hours later at 1 or 2 AM. Repeat steps above, checking BG, making decisions about giving juice to treat a low or somewhat low number and giving insuling to correct a high number. If she is low, we wake up more often and recheck her.

And then the alarm clock goes off again the next morning for the cycle to begin again!

While it looks very lengthy having written it out, we try to make diabetes a small part of her day...not an easy task, but we try!


LinkWithin

Related Posts Plugin for WordPress, Blogger...