We’re just getting started on week two of summer break and I’m still an emotional wreck. I thought I was just having a little anxiety about camp last week, but it proved to be more than that.
It wasn’t just one thing that did it but a bunch of little things I suppose, but HD was sent home from camp yesterday. The previous week he didn’t want to participate in dance so he got in trouble for not participating 100% of the time. By the end of the week, he had a crummy attitude but nothing was said to me behavior wise. He didn’t want to do his insulin shot Friday afternoon at the park, so I left work to dose him. He said he tried but it hurt and didn’t want to try again. Totally don’t blame him. But he was in trouble because he didn’t want to do it, which led him to leave his medical stuff out, which also got him in trouble. I don’t know if they forgot he is a child still, and NEEDS HELP. He’s not the most organized kid in the world. When they said can’t help him with his stuff, they clearly meant it.
Come Monday morning for the start of week two, I dropped him off at camp and they assured me everything was good to go medically. I received a call at lunch to help his leader correctly dose him as he had been running a bit high. (He was also running high last week, but I felt okay about it because I didn’t know how active he was going to be.) An hour later, the camp director calls to tell me he needs picked up because he’s not listening and is hiding from his camp leader when she says it’s time to get his blood sugar checked. I picked him up shortly there after and broke down crying as we were leaving. I believe I said something along the lines of, “I signed him up for camp so I would know he was safe and having fun. And now I have to take him to an empty home and hope that he doesn’t have a low while I’m gone because the last thing I want to do is come home to a dead child.” I might have been being a little dramatic, but I feel like I’m in a constant state of worry and it sucks.
I later received a long email from the director stating allll the reasons why he had to leave and that he couldn’t come back until a behavior plan was in place, most which happened the week before. I also needed to go over his diabetes care with them again because I was telling them things that were different than in his doctor notes. I don’t know what things though? She gave me the email and phone number of the person who is in charge of behavior plans. I sent an email and then called to check in later this morning to find out the status on camp, since both Perry and I had work today. Turns out the lady is ON VACATION this week. Freaking awesome. I was not impressed when I found that out later in the afternoon. They could tell I didn’t need to be messed with anymore and thankfully refunded my money for both the kids for the rest of the week.
But the whole thing is frustrating for me. We’re still new to diabetes. I don’t know everything there is to know about it yet, so I don’t expect HD to know either. He’s taken it upon himself to try to understand how to read nutrition labels and I’m so so proud of him for that. From the time we were released from the hospital, we have only had a handful of blood sugar readings above his range of 150, let alone above 200, which is when we give him extra insulin to bring it back down. I feel good knowing that he’s in range a lot. But because of that, we haven’t really experienced what having high blood sugar does to him behaviorally. All last week and yesterday he had high numbers, so I can’t help but to think his crummy attitude and his high numbers were related. At the same time, it’s hard to figure out what is sensory vs what is high blood sugar.
The whole thing is frustrating and overwhelming. I’m emotionally drained. I looked it and felt it today. I needed a hug from someone. I needed someone to tell me everything was going to be okay. This journey is really isolating. Thankfully I don’t have to work for the rest of the week. I’m looking forward to going to the beach this weekend. I need a little rest and relaxation.
Wednesday, June 27, 2018
Wednesday, June 20, 2018
Off to Summer Camp
It's the first day of summer for us now that the kids are "officially" done with school. Don't get me started on why their last day was on a Monday... Freaking snow days around here! None the less, it's summer and summer equals stress for me. Every year.
With me working again, I have Ms. Gail going to an in-home daycare, which she loves. I've spent most of the spring trying to decide what I'm going to do with HD and JP. I'm not crazy about having them gone for a good chunk of the summer, we didn't have any other feasible option unless we could shell out $400 a week for camp... They are excited about spending the summer with Grandma, Nanny, and Papa. There are a few weeks, however, that they get to hang out with mom. This week and next week are two of those weeks.
That being said, the boys have two weeks of summer camp, and their first one started today. Aside from Vacation Bible School, they haven't been to any kind of day long camp before and had no idea what to expect. I had no idea what to expect. I've been anxious just thinking about sending HD to camp with all of the sensory issues we've had with him, and now to add diabetes it. Hmph.
I've been preparing for this day for a few months now. I emailed to let the camp director know he's diabetic and received a response which said it wasn't a problem for him to come because they *usually* have nurses available. Imagine my surprise when I check in with them a couple weeks before hand and find out there isn't a nurse available to be at camp. It's a heart-sinking feeling. Just when I'm feeling good about everything, I get another curve ball.
I scrambled around getting all his gear together last night, but didn't have enough energy to get lunches packed. I was sick to my stomach all morning with anxiety but I managed get to him and JP to camp on time without any huge problems. I need to practice my "this is how to care for my child" spiel. I had several handouts to give to the camp leader that was a brief overview of what to do when he's low and what it looks like, and what to do when he's high and what that looks like. Then there's the explaining of how exercise can affect his levels as well, and how to prepare and monitor him during activities like swimming and just general running around play. There's a lot to explain and I just felt so unprepared when rattling things off.
Before I left, I gave both the boys a hug and wished them a fun day. JP looked at me and point blank said, "What if he dies?" I quickly said, "He's not going to die - you're going to help keep an eye on him." Then I left and cried the entire way home. I was managing just fine until then. My mind started jumping from scenario to scenario - what if he went low while he was swimming and drown? What if he missed feeling a low while he was playing, and collapsed on the field and no one knew what to do? I had tears rolling down my face all morning. I even made time for a little a work on the computers when I got to work until I could get myself together.
I kept my phone on me should the camp leader need to reach me. She called several times. She first called at 10:30 because when they checked his blood sugars after playing all morning, he was over 300. HD dove into his snacks that were supposed to be saved for this afternoon at the pool... I received a few calls at lunch time. And then my heart sank again when she called that afternoon while they were at the pool because his METER WASN'T WORKING. In the time we were speaking on the phone, he managed to go through 15 stinkin' test strips trying to get it to work. THIS IS WHY I HAVE ANXIETY.
He stopped my heart again when I went to pick him up and he wasn't playing in the gym or on the playground. I'm sure I had panic written all over my face. He was just hula-hooping in the second gym... My heart.
Perry has been having to work the closing shift at work this month so I don't see a lot him. I was so happy to hear he was working a normal 9-5 today because I needed a hug and to just relax. We corrected his high at dinner, gave him is bedtime insulin and just as bedtime comes around, he's low. While at the store last week, I bought a tube of glucose tabs for him to try, so he tried them out for his low and we sent him to bed. Perry went in to check on him 20 minutes or so later, and his meter now read HI 600+ and now I'm panicking thinking I gave him too many tabs. Fortunately, it was a false high because *someone* didn't wash his hands before testing... Phew.
I am happy to report that despite his hesitation to go to camp, HD had a lot of fun and is excited to go back tomorrow. JP however was pretty disappointed his brother wasn't in any of his groups. He wasn't happy when I said he had to go back a few more times this week...
Today was a hard day emotionally. I never know when the reality of his life-threatening disease is going to hit me. It comes in waves. Some days, like today, it hits me like a hurricane, other days it's just a blip on the radar. But it sucks regardless. Diabetes sucks.
With me working again, I have Ms. Gail going to an in-home daycare, which she loves. I've spent most of the spring trying to decide what I'm going to do with HD and JP. I'm not crazy about having them gone for a good chunk of the summer, we didn't have any other feasible option unless we could shell out $400 a week for camp... They are excited about spending the summer with Grandma, Nanny, and Papa. There are a few weeks, however, that they get to hang out with mom. This week and next week are two of those weeks.
That being said, the boys have two weeks of summer camp, and their first one started today. Aside from Vacation Bible School, they haven't been to any kind of day long camp before and had no idea what to expect. I had no idea what to expect. I've been anxious just thinking about sending HD to camp with all of the sensory issues we've had with him, and now to add diabetes it. Hmph.
I've been preparing for this day for a few months now. I emailed to let the camp director know he's diabetic and received a response which said it wasn't a problem for him to come because they *usually* have nurses available. Imagine my surprise when I check in with them a couple weeks before hand and find out there isn't a nurse available to be at camp. It's a heart-sinking feeling. Just when I'm feeling good about everything, I get another curve ball.
I scrambled around getting all his gear together last night, but didn't have enough energy to get lunches packed. I was sick to my stomach all morning with anxiety but I managed get to him and JP to camp on time without any huge problems. I need to practice my "this is how to care for my child" spiel. I had several handouts to give to the camp leader that was a brief overview of what to do when he's low and what it looks like, and what to do when he's high and what that looks like. Then there's the explaining of how exercise can affect his levels as well, and how to prepare and monitor him during activities like swimming and just general running around play. There's a lot to explain and I just felt so unprepared when rattling things off.
Before I left, I gave both the boys a hug and wished them a fun day. JP looked at me and point blank said, "What if he dies?" I quickly said, "He's not going to die - you're going to help keep an eye on him." Then I left and cried the entire way home. I was managing just fine until then. My mind started jumping from scenario to scenario - what if he went low while he was swimming and drown? What if he missed feeling a low while he was playing, and collapsed on the field and no one knew what to do? I had tears rolling down my face all morning. I even made time for a little a work on the computers when I got to work until I could get myself together.
I kept my phone on me should the camp leader need to reach me. She called several times. She first called at 10:30 because when they checked his blood sugars after playing all morning, he was over 300. HD dove into his snacks that were supposed to be saved for this afternoon at the pool... I received a few calls at lunch time. And then my heart sank again when she called that afternoon while they were at the pool because his METER WASN'T WORKING. In the time we were speaking on the phone, he managed to go through 15 stinkin' test strips trying to get it to work. THIS IS WHY I HAVE ANXIETY.
He stopped my heart again when I went to pick him up and he wasn't playing in the gym or on the playground. I'm sure I had panic written all over my face. He was just hula-hooping in the second gym... My heart.
Perry has been having to work the closing shift at work this month so I don't see a lot him. I was so happy to hear he was working a normal 9-5 today because I needed a hug and to just relax. We corrected his high at dinner, gave him is bedtime insulin and just as bedtime comes around, he's low. While at the store last week, I bought a tube of glucose tabs for him to try, so he tried them out for his low and we sent him to bed. Perry went in to check on him 20 minutes or so later, and his meter now read HI 600+ and now I'm panicking thinking I gave him too many tabs. Fortunately, it was a false high because *someone* didn't wash his hands before testing... Phew.
I am happy to report that despite his hesitation to go to camp, HD had a lot of fun and is excited to go back tomorrow. JP however was pretty disappointed his brother wasn't in any of his groups. He wasn't happy when I said he had to go back a few more times this week...
Today was a hard day emotionally. I never know when the reality of his life-threatening disease is going to hit me. It comes in waves. Some days, like today, it hits me like a hurricane, other days it's just a blip on the radar. But it sucks regardless. Diabetes sucks.
Saturday, June 16, 2018
Happy Birthday Sweet Girl!
You know who had a birthday last month and I completely missed sharing about it? Miss Gail! I *cannot* believe our little princess is 5 years old! I tried to convince her to stay 4 for just a little bit longer, but she insisted on having a birthday anyway.
For the last two birthdays she's wanted a Minnie Mouse cake, but changed her mind at the last minute. From Minnie to Cinderella and from Minnie to cats. This year it actually stuck though! (Frozen and Moana were tempting her a lot!) Her birthday seems to just sneak up on me every year. We count down to it, but I'm still not ready for all the planning birthday celebrations entail.
We did have a little party for her with her family the day before. Cousin Casey rode over on a special trip with Nanny. Robin and her boyfriend, Marshall, also made an appearance at the party. I spent the morning putting the finishing touches on the cake while the kids played.
Some time during the morning, my mom took the kids to the store and Casey came back with a wind-up boat to play with. The bowl he found wasn't big enough for the boat to float around in, so I filled up the sink for him. Before I know it, both him and Ms. Gail are running off to change into their bathing suits and then they hopped into the sink as I pretended to not be watching. You can only do this at Aunt Sadie's house! They were so sweet to watch! I couldn't stay no!
Ms. Gail love love loved her cake. It's not my favorite, but if the birthday girl loves it, then that's all that matters.
I seriously can't get enough of these two! Nanny had gotten Ms. Gail a "phone" which had lip gloss in it that resembled apps. I can't tell you how many fingers she painted with lip gloss!
She also could not wait to try on her pink hair! She thought it was the best thing *ever*!
Ms. Gail had to share her birthday with me this year as Mother's Day landed on her special day. Because I knew how much she enjoyed bike rides, I opted to have us check out a trail that runs through town. It did not disappoint, though Ms. Gail found herself having to walk up several hills. I think we biked around 3 miles round trip.
Conveniently enough there was a gas station right off the trail so dad suggested we "go check it out." Ice cream all around! The perfect incentive to go just a little bit further.
Because we didn't get to roast hot dogs at her party, like requested, we gathered around for a roast that evening. Pretty sure roasting hot dogs is one of the kids' most favorite thing to do.
S'mores are just an added bonus :)
