Monday, August 27, 2012

Another gray hair to the head...

Whenever I see the nurse's name come up on caller ID, my adrenaline rushes a little bit more. If everything is going the way it is supposed to go, I don't hear from the nurse except through email. So when the phone rang this morning and I saw her name flash up, my heart skipped and I answered.

"Hello, Mom," says a small voice.

"What's the matter Alex?"

"You forgot to give me back my meter this morning," she says. I immediately think back and remember I had taken the meter home in my (failed) attempt to download the data (need a different cable).

"Alex, you have a backup meter in your backpack for the bus. Go get that one," I quickly think.

"I don't have that one either," she says. Now I am suspicious. I never remove that one from the bag. How could it be missing.

"Do you feel low or are you just testing for a snack?" I ask.

"I feel low," she says in a little voice. Now I start to panic a little.

"Alex, take a glucose tablet and get someone to find your backpack and look through it. The backup meter is in there. And I am pretty sure I re-packed the regular meter too. I'm on my way up to the school with your home meter just in case," I say.

I drive to the school attempting to keep it under the speed limit.

As I run into the health room without stopping to sign in, I don't see Alex. The nurse says she has a backup meter and Alex tested and was 211. Whew! Then she says Alex said neither meter were in fact in the backpack.

I walk to the other end of the building to Alex's classroom. I disrupt the class. I ask for her backpack. Inside a zipped compartment are TWO meters - the school meter and the backup meter. I hold them out to Alex and tell her the school meter will be in the health room for her next test. I re-clip the backup to the hook it is SUPPOSED to be on.

I go back to the health room and tell the nurse both meters are not lost and place one back in her drawer.

Kids...this is why my hair is turning more and more gray each passing day.

P.S. The sleepover was a success. Her numbers ranged from 115-266. I ended up leaving basal alone and changed her carb ratio for the evening to slightly higher. She texted me every number and I helped her decide on when to bolus and when to let it be (lots of swimming). She even texted at 2 AM when the parents woke her for that test. Just one thing...she is going to be TROUBLE with a cell phone. She texted me the entire night about everything and anything even after telling her to stop and go hang out with friends. Clearly we need some cell phone etiquette lessons to add to everything else.

Tuesday, August 21, 2012

If she didn't have diabetes...

it would be easy to respond to the party invitation we received this past week inviting Alex to a sleepover. In fact, I would embrace it and be grateful for a "break" from the constant "I'm bored" yawns that usually follow on the weekend when we aren't out and about.

But...this is different. I didn't say anything about the invitation at first to Alex. In fact the mom was nice enough to point out that the girls were welcome to stay for the swimming and cake and then go home if they wanted to (I'm thinking that was for our benefit). But...can you imagine me telling Alex to go home while all the other girls stay in their PJ's and slumber bags? That's going to go over well.

Anyway, I said nothing. And then Alex came home from school and mentioned that her friend told her about the party and sleepover. And then she declared she was going. I told her we needed to discuss it with her dad.

The thing is...it isn't fair to say no. She is going to be 10 years old in less than 2 weeks. She is on the insulin pump and has been super responsible. How can I tell her she can do anything with diabetes .... oh but sleepovers are out! 

So I mulled it over and finally realized I needed to make a decision. I called the mom this morning and discussed it with her and let her know that if anything I asked of her or said concerned her to the point of not having Alex over, I'd rather she tell me than try not to hurt my feelings. Then I explained there were 4 basic things I would ask of her in order to have Alex spend the night:
  1. Carb Counting: Help Alex count the carbs in all the food she eats. I suggested if she provide a list of foods, I could print a list of carbs for Alex and her to have. Alex could call me at anytime as well to ask for advice on carbs.
  2. Low Blood Sugar Protocol: I explained the rule of 15 and how to handle blood sugars below 80.  I also explained that they were to call me with any readings below 80.
  3. Middle of the Night Check: This was the biggest thing to ask of her - to get up about 3 hours after the girls go to sleep and wake Alex and have her test herself. If she is below 150 to give her a snack I will provide. I also plan to set temp basal settings on her pump so she runs a tad higher for the sleepover.
  4. Glucagon: I will bring her glucagon and explain how and when it would be used (while assuring her to date it is not something we have ever had to use so it isn't something she should expect to use but always should know what and how to use it in an emergency)
If she was okay with those 4 items, I was okay with the sleepover. Alex would carry a cell phone and text/call with her numbers when testing. If she had several lows, all bets are off and she would come home.

The mom was super nice and said she was on board with having Alex over for the night. I told her to think about it and talk to her husband first and call me back tomorrow. I don't know that I would be okay with it, you know? But I might be unsure what to say if I was her and need some time to think it through so I wanted her to have that time. It is a lot to ask of someone with no background in diabetes.

So we'll see what happens...I'm scared to death. I won't sleep Saturday night. I'm sure of that. But what else can I do? It's one night...it's only a few miles away...we can be in communication easily with the cell phones...I can set temp basals on her pump to run her higher...it's better to let her live her life than to keep her from being a normal 10 year old tween girl who just wants to experience what everyone else gets to experience, right?

Friday, August 10, 2012

Back to School

I think this has been the fastest summer on record since my kids were born. And oddly enough, it was a rare summer that wasn't filled with long road trips. Yes, we had trips. We went to California (twice). The kids both went to summer camp. But in summers past, the kids and I would pack the car up and drive 13 hours to visit grandma at the ocean and stay with her for 3 weeks (oh how I miss that beach house she sold). We'd then drive another 10 hours to Pennsylvania or Maryland and attend a family reunion and visit other family. Sometimes I'd go crazy and add a side trip to those two trips. So maybe now it makes sense to you that 2 short trips to California are nothing compared to what we've done.

I thought I would have all this time to attend local library events, parks, city pools, etc. with the kids this summer. I thought we would have many lazy days. Needless to say the time between Alex getting her insulin pump the last week of June and school starting 2 days ago is a whirlwind. And before I knew it, the first day of school was upon us.

First Day of School - August 2012

This is new territory for me. Alex nearly died last winter. I have no doubt her teacher took diabetes seriously. She came to the hospital. She knew how sick my little girl was. But how will this year go? What is the protocol for diabetes with a teacher who didn't experience what we experienced?

As soon as class lists were posted about a week before school began, I was sending an email to her new 4th grade teacher. Actually first I called the front office and asked to get a message to her for a meeting. I don't know who answered the phone but they weren't overly concerned. They told me I could meet with her at Back to School night because teachers weren't even in the building yet. They seemed annoyed at my call. I know a lot of the office staff so I wondered if this was someone new. Not to be dissuaded, I emailed the teacher.

She emailed back within 24 hours and graciously agreed to meet with me ASAP. When we met, I made sure to tell her I didn't care that her room was a mess (she kept apologizing). All I cared about was that she was willing to meet me at 7 in the morning before a long faculty meeting on her first day back to the campus.

And then I swallowed hard and tried to make the words form as nicely as I could. Because as a mom of a recently diagnosed 9 year old diabetic, I don't know where the "line" is - the line between being informative and ensuring she can be trusted with the care of my child and scaring the woman to death thinking my daughter was going keel over in her classroom every 10 minutes. You want the teacher to realize this is a life or death matter...but not to treat Alex like she is made of fragile egg shells either.

Anyway, I first made sure she was aware of the significance of being a type 1 diabetic and what you hear about on the news. I emphasized that Alex was able to enjoy anything the rest of the class enjoys as far as treats, etc. She expressed relief and immediately explained she had spent a day creating special welcome packages with starbursts for each child and then got my email about Alex and wondered if she needed to throw them all out. So we went over the protocols for foods. We went over the significance of giving Alex freedom to use the restroom, getting water, or visiting the health room. We discussed how to handle lows. I referenced her IHP that was in place. I urged the teacher to meeting with the school nurse and consider having the nurse talk to the class about diabetes. Finally, I asked her to always contact me first if she ever had concerns that Alex might be taking too many restroom breaks or snacks, etc. I don't want Alex to ever feel that she can't say she might be low because the teacher questioned her breaks. Talk to me. Let me talk to Alex.

I left the meeting feeling pretty good about the teacher, the protocols, and her compassion and willingness to learn about type 1 diabetes. She even asked to visit the health room with Alex sometime the first week to see what Alex does as far as testing since she doesn't have a frame of reference.

We attended Back to School night. I laughed a little over the ridiculousness of the bag of supplies for the health room which was far heavier than her school supplies bag. While I watched other parents hand over a small pill bottle with a little form to the nurse, I came up to sling my 6 pound bag and packets of forms and medical papers on her table. Then seeing it wouldn't fit in her box with the little pill bottles, I suggested Alex and I head up to the health room and put it all away in her drawer. Yeah, my kid has her own drawer in the health room for her stuff. That still seems so crazy to me. But it is what it is.

Yesterday afternoon, I received an email from Alex's new teacher (day 2 of school):

"Good afternoon! I just wanted to let you know that Alex has been doing fantastic.  She felt low this morning after Music and went to the nurse and has been fine.  She is so on top of everything.  I am so impressed!"

Awesome!

Monday, August 6, 2012

Paybacks are a &$!@#!

School starts this week! I think this has perhaps been the fastest summer since my children started going to school. And that's surprising to me since we didn't take any long road trips to speak of as we have in summers past. I have been determined to start the school year right and make sure I'm not scrambling at the last minute for supplies, clothes, etc. So last week I went through each kids room and we tried on all the clothes they had and donated tons of outgrown clothing and discarded toys.

Alex pretty much lost her entire wardrobe. Besides that fact that she is going through some huge growth spurt, remember she lost 18 pounds last winter...right about the time winter clothes (for Arizona anyway) were needed. She has now regained all of that weight back and then some as well as grown a few inches. In fact, I don't even think some of her summer clothes fit anymore. This would mean a rather large shopping spree was going to be needed so that I didn't send her to school in a swimsuit or pajamas which is about all that was left after the big cleaning out day.

Clothes shopping used to be so easy...I would weigh and measure the kids and then go to size charts online. Then I'd either order clothes online for them or go one night when Joe was home from work. I still do this for my son. But Alex is going to be 10 in a few weeks. She thinks she is 14. Oh how this brings me back to my own days of shopping with my mom as a tween/teen. Things haven't changed much.

Stop #1: Shoes
Alex remember has foot problems. It's important to get some really comfortable supportive sneakers for everyday wear. This also means any sneakers we choose are going to be super expensive. So we drive 30 minutes away to a mall that has a Stride Rite. I zone in on the comfortable well supportive sneakers.

Alex zones in on Converse. "Mom!!! Everyone wears these!!!! I will be popular if I have these!!!"

I discard the comments. "Alex, your feet hurt when you run and walk. We paid $80 for heel cups and $100 for orthopedic appointments. The doctor said you need solid sneakers. End of story. They have lots of cute colors. Look at the pink and blue ones here."

Alex folds her arms and scowls.

Thankfully the clerk comes over to "help". We spend about an hour in this one store. I think we tried on EVERY single pair of the "supportive sneakers". One pair "hurts at the seams". One pair is ugly. Another paid is "too low in the heel". I'm ready to throw all the shoes at my daughter at this point. The clerk mentions they are having a buy one get one half off sale. She brings out the Converse. Grrrr. "Mom! They feel awesome! My feet don't hurt at all!!!!". We go another round. Finally we compromise. She can have the converse for wearing only on non PE days and if her feet aren't hurting IF she starts giving me some honest feedback on the other sneakers. We finally walk out with 2 pairs of shoes.

Stop #2: The "You Know What"
Shocking as it is, my little girl is showing some budding signs of puberty if you know what I mean. It's actually WAY to early, and we are in the midst of working with our endo about this. But in the mean time, it's time for a bra, or as Alex will only refer to it as the "you know what!" Of course this is the child that will only wear ONE KIND of sock because it's the only kind without feeling the seams. She hates most swimsuit straps. Obviously, she needs to try on several bras before I'll find one she'll agree to wear. That's kind of hard when she won't even go to the bra section or be seen with me if I am carrying any of them. So, we head to Justice...her favorite store. She stays in the front of the store. I go to the back. I pick out several styles. She picks out several non sale outfits. We meet at the fitting room. I'm not allowed to go in with her. But I'm not allowed to go anywhere. So I stand outside the door. I ask her several times if I can help. I mean, does it seriously take like 10 minutes to put on ONE item???? Finally she comes out (no bras - they are hidden under her outfits). She fusses when I try to pull up the shirt to see the waist. She fusses when I tell her to walk around and ask her if the back is comfortable. Oh it's so fun! Toward the end of the pile, I remind her about the "you know what". She groans and tells me to be quiet. I'm embarrassing her. I tell her I need to come in to see them. I am only allowed in if I promise not to look at her until she has it on. She doesn't know how to put it on. So then I'm allowed to help if I don't look at her. How the hell am I supposed to do that? Finally we make it through the pile and find an acceptable style. I buy 5 of them to start off. And by the way, I immediately pull the pads out of them - what tween little girl NEEDS pads in their bra? Really??? Who is the genius of decided to add that feature anyway?

Stop #3: Justice continued
Because the shoe store took so long and the you know what took so long...we have to go BACK to Justice the next day to finish the actual clothes shopping. It's funny to show Alex items on the clearance 80% off rack and her turn her nose up at them. But, then she wants all the full price items up front! My mom says I did this too. After a little while, I got smart though - I put her in a dressing room with about 4 outfits. Then, I started bringing her more outfits...little did she know most of them came from the 80% off rack! It's boring waiting outside the dressing room in between the 10 minute outfit changes. I try to move around the store. She gets that annoyed "mom!" in hushed whines when she sees I'm not right there when she is done changing.  Finally we are done. I'm ready to check out and scared to see the total though I feel good about what we have picked and the amount we have picked that were clearanced. So as I am paying, Alex asks for a $3 lip gloss. I remember seeing like 5 of them in her drawer at home. I remind her I just spent about $250 in shoes and clothes so no! She starts stomping her feet and crossing her arms at the register. I push all the outfits back at the clerk and turn around and tell her we can walk out now and she can wear her Hello Kitty nightgown for all I care. That does it...she storms up front far away from me. I've just "embarrassed her" in front of a bunch of other whining tween girls. I pay and we leave.

And so it begins...