Monday, April 30, 2012

I'm still here...

We've had a crazy couple weeks here, thankfully not crazy in the sense of any bad diabetes related events...just crazy. School is ending in a few weeks! My parents have been visiting in their RV. We've had myriads of end of year projects, planning for summer vacation, prepping the pool and yard for the hot Arizona summer and so on...

I can't believe we're 4 months past Alex's diagnosis. Some days, it seems like diabetes is just a part of our life. Sometimes, it still feels like it is something that will go away. Most days I remember her diabetes bag when we leave the house. There are those few times I have gotten in the car and backed out of the driveway and remembered that the bag was on the table. And it's like reminding me that this is our new normal.

My most awesome news is that Alex is again doing her own blood glucose testing! She did it by herself for about 24 hours early on back in February if memory serves, and then scared herself out of it and refused to do it again. We'd gotten to the point where she was saying she would live with me forever before she would poke herself. No amount of bribery, encouragement, reasoning, etc. would change her mind. Finally she was told she could not visit friends at their houses until she could test herself. About a week or so passed from that announcement and my mother came to babysit her. My mother encouraged Alex by explaining that Alex needed to test Grammy because Grammy is also diabetic and that if Alex and Grammy were alone together, they both needed to take care of each other. She convinced Alex to test her (and they coincidentally have the same meter). Within the day, Alex was again testing herself. And, she has been testing herself for almost 2 weeks now without help! Thank you Grammy!!!

We've also been tiptoeing into the world of insulin pumps. I was originally told we would not be able to pump for 6 months to a year from diagnosis. But as we've attended a few diabetes events and such, we keep meeting kids who were diagnosed in the same time span as Alex and they are already either trialing or wearing new pumps. So we wondered why it hasn't been brought up to us. Some of those kids share the same doctor. So I called the endocrinologist and they said Alex could begin transitioning to a pump. We signed up for a pre-pump assessment class scheduled on May 15th. My goal is to select a pump and get her pumping in June so we have the summer to get the hang of it before going back to school.

We had the fortunate experience of attending a recent JDRF conference in town and met with all the major pump vendors. Before the conference I was leaning toward the Animas pump because of the second remote and just word of mouth rave reviews I've received about it from other parents of type 1 kids. One thing I had a concern about was the OneTouch strips being used with that pump. We moved away from OneTouch early on because we had so much frustration with the amount of blood needed for those strips compared to our current freestyle lite strips. I hated the thought of going back to them. I had kind of dismissed OmniPod pumps because I thought the pods adhesive would bother Alex's sensitive skin. She hates most socks because of seams - how would she ever tolerate a big old pod stuck to her skin every day? But as we passed the OmniPod table at the event, I saw that their monitor took the freestyle strips. I stopped and began to speak with the vendor and look more closely at the pods. We took a demo pod home. Alex wore it for 3 days. She never complained about it and when we pulled it off, it was slightly red but didn't seem to cause her any rash or anything.  So as of now, I'm leaning toward the OmniPod - it would mean no tubing and I really like that! It would mean she gets to keep her test strip brand and we all like that! But...I could still be swayed...we plan to attend the class and want to trial both OmniPod and either Animas or Medtronic with tubing. We want to be sure it is a good fit no matter what we select and wearing a demo pod with no insertion could be completely different then the real trial with saline. That brings me to our next concern...cost...

I'm happy for insurance but can I just say that I am so disgusted by the cost of things. It seems like every time we think we are getting a grip on costs, we get a few bricks thrown our way. We managed to pay off our medical bills from Alex's hospital stay with Joe's recent bonus and some serious tightening of the belts around here. I've saved about half of the cost of diabetes camp. We've made the kids quit all activities except scouts. And I was having hopes of putting them back into a few things over the summer. And then I got the phone call about pump costs. And we're back to square one. Because, a pump is considered DME (Durable Medical Equipment). Our plan covers cost AFTER a yearly $2000 deductible and only 70%  of supplies after the deductible is met. The bottom line is that we will be paying about $2000 a year EVERY year for her pump supplies. Up front, we'll be paying $1500 to cover the initial purchase and 3 months of supplies. That is in addition to her prescriptions which costs us about $200 a month. That's in addition to doctor visits at the cost of $50 a visit. That's in addition to the mental health counseling attended every other week at a cost of $50 a visit. I don't understand why an insulin pump isn't covered better for a diabetic, a type 1 diabetic child no less. Everything we've read proves a pump will help provide better control and a more normal life for her. Even when I WANT to feel like diabetes hasn't take over our lives....it really has...it has impacted everything and plays a part in every decision we make these days. I hate it. I hate it. I hate it. I want to send Alex to horseback riding lessons. I want to take her to the American Girl store. I want to send her to a few day camps this summer. I want to sign up for the gym. I want to take my son to Legoland. I want to send him back to figure skating lessons. I want to get a job outside the home without wondering what I would do with my diabetic daughter for daycare or for the times which seem to creep up often when she is out of school or going to a doctor's appointment making me an unreliable employee! So here I am...at home...looking at insulin pumps and insertion needle device things to stick in my daughter's body every 3 days and wondering how to pay for it all and thinking our summer is going to be filled with pump education and not a lot else. At least we have the pool ;-)

And yes, yes, I know I'm wallowing in self pity. I know it could be worse. I know we should be fortunate for alot of things. And, I am. I promise. This is just me...getting what I feel out in writing because it helps me keep my eye on the prize and keeps me from sounding and acting like a 2 year old throwing a tantrum in real life. This is me being and thinking what I really think in the heat of the moment. It's not the most mature. It's not the most rational. It's not the most selfless. But it's honest. And if I write it and get it out, it's what helps me get past it and move on.

Friday, April 13, 2012

Just Keep Swimming...

One constant we have heard from other Type 1 parents has been about swimming. Thankfully because even the most calm drama-free parents I have encountered have driven home the point about swimming lows, I knew this was going to be something we needed to be proactive about.

Yesterday, Alex went swimming for the first time since diagnosis. She has been running super high the last 2 weeks - numbers in the mid 300s around lunchtime. We've been changing up ratios and everything else in our attempts to combat the highs. At the same time, she has been banned from running and jumping and PE class and karate for the next month because she was recently diagnosed with Sever's Disease in her left foot. So exercise hasn't happened a whole lot to help the high issue.

We decided to go for a swim at my parent's RV resort yesterday before dinner. Alex was SO excited. I decided not to swim but sit on the sidelines and be a very observant mom. I tested her before she dove in and the number was 209. I decided not to give a snack because she was high. She swam for an hour and it was some serious swimming. My kids LOVE the water. They were all over the pool having an awesome time. I watched them and asked Alex to give me a thumbs up a few times and reminded her quietly to try to remember to stop if she felt like she was getting low or extra tired in the water.

After exactly one hour in the pool time was up for kids (age restricted resort pool hours for children in force as my parents are in Sun City). Alex came out of the pool and I retested her. She was 105 - dropping almost 100 points in an hour - wow! Good thing she was high I guess to start with! I had this feeling she was continuing to drop though. I don't know how to explain it but I could just see it. Her grandfather was back at the RV preparing a big dinner that was going to be ready as soon as we could hop in the car and head 2 streets to the RV. When we got there just a few minutes later, she was 90.

We worked quickly to get her plate ready. She was about to eat a 115g dinner. This is where me being new to this wasn't sure of the exact right things to do. Based on the meal she should receive 6 units of insulin. She's been running super high outside this swimming event. I decided to let her eat without the insulin and then administer it about halfway though.

I tested her about 20 minutes after eating and she was 117. She was hungry so I gave her 5g of pretzels.

We went home and the kids showered. About an hour passed and I caught Alex over at the sink washing her hands (I was on the phone). She had grabbed her kit and told me she was low and was needing me to test her. That's not normal Alex - she usually resists testing. She was 81. I gave her a 15g pudding.

At bedtime, she was 143. Her overnight target is 180. I decided to let her go to sleep without a snack because I figured she'd come up some - she usually does. I tested her an hour later when I went to bed and she was 114. At that point I got an apple juice box. She was really out of it and not willing to drink the juice. That's not like her and I could tell even though she was talking and such she was not awake at all. She was yelling and not wanting to sit up. I was trying to shake her awake and she kept falling back on the bed. I finally got the juice in her and I went to sleep for a bit. I set my alarm for 1:30 AM.

When I woke up and tested her, she was 80. I grabbed 2 peeps because I was hoping not to repeat the juice episode. She was more alert and ate them quickly. I waited the 15 minutes. 83. I grabbed one more peep and half a pack of gummy bears. I waited 15 minutes. 100. I then decided since she wasn't low and was coming up, I didn't want to overdo it and send her in the 250s in the morning. I went back to bed about 3:30 AM because she was alert and seemed better to me. When we got up at 6 AM, she was 180...target number for bedtime!

I guess the bottom line is I better be really alert when she swims. We have a pool and there will be a lot of swimming this summer! Snacks before and after will be a must now that I know especially if she isn't high to start with. On the positive side, it's a great activity for her and doesn't put any pressure on her foot. I just think it will be one of those things though that will always cause me anxiety.

Monday, April 2, 2012

My Spirited Child

Have you ever walked into the self help section of the bookstore and kinda smirked at the titles referring to "spirited" children. They aren't fooling anyone! We know what they really mean. They're just trying to use some politically correct words. I think my daughter was perhaps 2 when I first started browsing self help aisles for handling temper tantrums, anger, stubbornness, etc. I'd think I just was a complete failure as a parent sometimes but then I know it can't ALL be parenting. I have another kids who mind you is no perfect child but asking him to brush his teeth doesn't turn into an hour long battle ending in raging screaming fits just because the mood strikes him. There are times it does with Alex. And, it's just always been that way.

She can be the sweetest most generous child. She can be funny and entertaining. And she is so incredibly smart. Here is a kid who has missed more school days in the past few months than could be considered passable but at the same time, she has straight As. She scores in the 95th-100th percentile on standardized tests. She doesn't miss a beat. That can be good. That can be bad. Sometimes I wish she'd miss a few beats. Because you can't get nothing past her.

We attended a really nice diabetes fair Saturday. It was truly wonderful and the best part for me was it wasn't wall to wall people at one of those big convention places where you just want to get out. I don't do well in crowds. So this was a more intimate setting where you could really connect and talk to people. Alex wanted to spend her time in the kid zone and I was fine with that! She had an awesome time in the bounce house, getting her face painted, playing bingo and learning volleyball and basketball. She wanted nothing to do with any of the classes offered or the exhibits where they had some pumps, meters, etc. I wanted her to see. And I was okay with that too. It's been baby steps and just letting her be with other kids with type 1 and talking to some of the awesome teen/young adult volunteers in the kid zone was good for her.

But....here is where I whine...why does everything have to be so difficult with her? My husband and I attended the classes including one on how to help your child cope with diabetes. Some of the kids chose to come to the class and participate. All of the kids we met including another girl recently diagnosed talked about doing their own blood testing. My girl CAN do her blood testing. She did it for about 24 hours. And then she decided she didn't want to anymore. She said she is too scared of the poker. She had a low (65) and poked herself and scraped the side of her finger really bad because she was shaking. And that was the end of it. She'll set up the meter. She'll squeeze out the blood for the strip. But she won't use the poker. I've tried having her push the button without a needle inside. I've tried having her poke me or a stuffed animal. She isn't having it. She says she'll live with me forever before she'll do it again. I've tried bribing her with toys. I've explained she can't visit friends without me until she can do her own blood testing. I've told her I'll poke her whenever she is feeling low or shaky if she'll just do it all other times. I've threatened. I've begged. I've pleaded. She isn't having it. Someone at the class stated they forced their child to do their own testing at age 6 after 2 weeks home from the hospital and they've done it ever since. Well how do you force someone who won't be forced? I asked that question. Everyone looked at me like they didn't understand how I couldn't just force her.

I don't know what to do. She is seeing a counselor. I do think it helps. She does willingly comply with testing. She complies with shots. She logs her food. I look at these kids and I hear these kids who all seem to accept their self care as a part of life. When will mine? And what is it that I'm not doing to make it like so? I'm hoping camp helps. I do believe she's made progress - and that's the key I guess. Alex always has made her progress in her own time. She was diagnosed with an anxiety disorder at age 5. I still have to go in public bathroom stalls with her because the noise scares her. So many things scare her and take more time than usual. It can be so exhausting. And it's so embarrassing sometimes too. You can be out in public and your almost 10 year old kid is having some meltdown because she freaked out over a bee or a storm cloud or whatever and people are looking at you like why can't you control that big kid acting like a 2 year old?

I suppose I could throw up my hands and do what was suggested when Alex was in the hospital refusing to let us do her shots and take up the offer for Prozac from a psychiatrist but frankly, I don't think that's the answer. I'm all for drugs when drugs are needed. But I don't know. Alex will do things and try new things....but in her time, not ours. I just have to keep reminding myself she'll get there. She's tough and she is brave and she is smart. She won't want her mommy following her around college with her poker...I hope...