Wednesday, June 27, 2018

Summer Camp is Over Already

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 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.

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 :) 

Saturday, April 21, 2018

It's Been One Long, Emotional Week at Home

It's been a solid week since HD was diagnosed with an incurable, potentially fatal disease. I don't think the reality of that has sunk in yet though. I'm literally acting as his pancreas. 

Honestly though, I feel like the mother of a newborn. I'm exhausted from waking up at 2:00am every morning to check his blood sugar levels. He had a low the other night, in which case I had to wake him up to eat some fruit snacks. But then I was awake at 2:30am panicking about him. Is he going to be okay? Is he going to dip lower before breakfast? How do you go back to sleep after that? How do you shut the worry off at night? All parents worry about their kids but my worry has skyrocketed in the last week. 

I feel overcome with worry throughout the day too. It's similar to the first day you take your child to daycare or have a babysitter over, leaving them in someone else's care. Newborns can't really get into trouble - they eat, sleep, and poop. But my 9 year old, he has a fully functioning brain that tells him he's hungry. Up until last week, when he was hungry, he could just go grab a snack, no big deal. But now it's terrifying to know he can eat when he's hungry. When he's at home with me, I feel like I can keep him safe, but when he's at school, I'm not there to be his food monitor. We've set up snack bins in the pantry, and in the fridge, with labels on everything. Snacks in this bin and this bin you can eat freely when you're hungry without having to get an extra dose. Snacks in these two bins, you can *only have one* between meals. It's helpful though it's not fool-proof, after-all, I'm working with a boy who often has trouble controlling his impulses.

We took him to school Monday after lunch because he was so excited to show his teacher and friends his wristband from the hospital and tell them all about his weekend. I took him into school Tuesday morning, with the assumption that his doctors had sent his medical orders over. They hadn't. He wasn't supposed to be at school without them, so after reaching voicemail after voicemail, I finally left a message for someone. It was frustrating having a list of phone numbers to call, but not being able to reach a person at 9:00am. I returned to his school Tuesday at lunch to give him his insulin and to get a few more things sorted out with the school nurse. 

By Wednesday morning, HD was feeling confident enough to GIVE HIMSELF his own insulin shot! Huge relief! The school nurse, for whatever reason, can't give him his insulin shot at school. I'm not understanding the reasoning. Only he himself, myself, Perry or a "parent designated adult" can give him his shots. I'm lost as to how to figure out who to designate as that person. I'm in an area where I'm still very alone and haven't been able to get a hold of the right person when calling the ADA. Luckily there are two other kids at school who also have T1D so the process of eating and counting and dosing are not new to them. 
He received his diabetes bear in the mail Wednesday afternoon, along with a bunch of handouts and books about diabetes. Along with his bear he received a practice needle of glucagon, his medicine we give him if he has really low blood sugar and is unresponsive. He demonstrated to Ms. Gail how it works, though JP found it all to be very boring, 

We were running low on test strips by Wednesday evening. I was not prepared for how much they were going to cost. The doctor still hadn't sorted things out with our insurance company so in the meantime, we were in limbo, and ended up needing to buy enough to get us through until our insurance was squared away. Unless you have a prescription for them, they are $80 for 50 strips. In a typical day, we'll use between 5 and 7. Yeah.... it'll last us about a week. I was able to *finally* pick up more insulin from the pharmacy last night. Ask me how annoyed I was about this... We were using the pharmacy at Safeway because that is typically where we shop, but our insurance carrier is requiring us to use a CVS pharmacy, so I told them we'd us the Albertson's near our house. Imagine my surprise when they sent it to the CVS pharmacy 25 minutes from my house, located in a freaking Target store. You know what that means?! A lot of impulse buys because, well, it's Target and I love Target. At least it's near-ish to my work, but still very frustrating for me. 

Once I had our insurance debacle somewhat figured out Wednesday evening, Ms. Gail and I took him on a hunt to find reading glasses. He mentioned the other day that reading was getting hard because the words were getting fuzzy. Common symptom. My mom directed us to the dollar store, since you know, they're only a dollar. He found an orange pair he liked, though the pickings were slim. I later found him some brown ones that look way cute on him at Ace Hardware. Who knew they'd have reading glasses for $4?!
I'm also struggling with how to calculate the serving size for the food he eats. This morning, I made buttermilk pancakes because Ms. Gail came bouncing into my room saying that's what everyone wanted for breakfast. She knew this because she told her brothers that's what they wanted. I took the recipe at hand and put it into a nutrition calculator to see how many carbs were in the recipe. We dosed him after breakfast because we didn't know how many pancakes he'd eat. He ate 16. The original recipe said it served 4. I'm living in one big word problem right now. Add this and this and divide by this but if x is too high, subtract this and add one for each of these and add it to the first  sum. Give him too much insulin and he'll go low, give him too little and he'll go high. 

I finally broke down crying Thursday night. The list of things needed to be done kept growing and I just needed help but I didn't know what kind of help. I needed to go grocery shopping, but first I needed to meal plan, but working until 4 or 5 every day has made that difficult. I was fortunate to find a box of mac n cheese in the pantry, but remembered as we sat down to eat that Ms. Gail had gymnastics that night. When we came home I found HD had homework and he *refused* to do. Writng is such a struggle for him. It would have taken 5 minutes, but we fought about it for over and hour and a half. The house needed tidying. HD's pile of supplies kept growing bigger and I needed to find a new place for it all. Perry has been working extra because his store is under staffed. By the time he arrived home, he's tired, I'm exhausted, and just overwhelmed with everything. The tears started rolling by bedtime. Uncontrollable sobbing in the corner of the kitchen. 

I just want to take this away from him. I know he'll be able to live a normal life but it still doesn't make it easier to digest. 

Monday, April 16, 2018

This is Fine...

I have anxiety. The phrase “this is fine” has been a running joke for the women in my family because of the relate-able humor we all have when it comes to anxiety. When talking about uncomfortable situations, it tends to make us feel better when we say, “This is fine” after something that seems so regular to most but very uncomfortable to the rest of us.

Here’s a little humorous example, though it wasn’t humorous at the time. I agreed to help out at a store in downtown Portland. I’ve been bouncing from store to store and this one happened to be one I had previously been to. There is a parking lot in the back but when I arrived it was full. Just going downtown gives me anxiety having to navigate through traffic on unfamiliar roads so to have the lot full tipped me off, but this is fine. This is fine. I’ll just find the parking garage. But now there are one ways to navigate and now I’m super far from the store and in the middle of downtown where I can’t just stop and re-plug in my coordinates. But this is fine. Finally I find the freaking parking garage and park but now I’m not seeing where to go to get out. I’m the basement of a parking garage super flustered and I ended up confessing to another women how I’m completely lost, flustered, and now late for work. And the phrase I’m thinking while I’m stuck in a parking garage? This is fine. The entire day at work, I’m put in these scenarios where I’m needed to complete certain tasks that haven’t been taught to me yet and I’m uttering the phrase “This is fine” just to make it through the day. (The latter is more stressful than anything.)

It’s a little humorous I was lost in a parking garage, right? I’m sure a sane person would have been fine. But me? No. I have found I don’t enjoy exploring or navigating new places on my own. I prefer to have a second person with me to ease my mind about finding parking, finding the building, finding the entrance, etc. I went out on a "date" with my husband the other weekend, when it was actually more of a me-tag-along night out with a bunch of his co-workers. I did survive. But I had to find parking on my own, in dark, which I HATE. I ended up sitting in the car for several minutes before I was able to convince myself to get out and go find him. In a crowd of people, which I hate. Guess who walked right past the entrance to the bar? This girl. But you know what? This is fine. I eventually found him and he then tried to make me go to the bar to order something. ON MY OWN. Nope nope nope. I took his drink and called it good.

I tell you these stories because you know what I have to do now? Navigate an entirely new world. Appointments and new people. Lots of new people. And calling people. I'm so introverted it hurts. In the past 24 hours I have had to push my anxiety aside, repeating "This is fine" over and over.

We left the hospital yesterday afternoon, as soon as we were done with lunch. On our way home, HD and I stopped at the pharmacy to pick up the prescriptions the doctor sent over, but only one was ready. so we went home and took a nap. Come dinner time, we prepare his meal and correctly count how many carbs he'll be consuming and do the math to see how many units of insulin he needs. I go to shoot him up only to discover the nurse sent us home WITH THE WRONG NEEDLES. We're digging through our binder on how to use these ones because they weren't the ones we practiced with. I'm almost in tears as now scenarios are flashing through my mind of us having to back to the hospital to get more, but then I remember something about picking needles up at the pharmacy so now I'm panicking about it being closed early because it's Sunday. They were open. But now I'm worried they prescribed the wrong ones. So much going through my mind and I'm trying really hard to not just break down and start crying. They had the right ones, and the rest of the night went smoothly.

Now Robin is home and she's thinking he can't go to school until the school is ready for him, and now I'm worried about work. I was able to take him to school today though. I waited until he had lunch at home along with his insulin shot before taking him. He was really excited to tell his teacher and friends about his hospital stay though when he arrived at school, he was looked a little timid. We first met with the nurse to just reiterate that yes, he does have diabetes. Yes, the doctor is sending his orders over. He's got his snacks ready in his backpack and he knows what to do with them. (But I hope he remembers!) I labeled everything. In detail. He's got his blood sugar monitor. He won't let others prick him. He likes to do that himself.

This is fine. Everything is fine. He is going to be fine. It's literally three hours. Perry is at home if he needs something. Everything is fine. I showed him his snacks he was free to eat at school and wrote directions on a bag of two other snacks, should he feel like his blood sugar is low, even though it was pretty high when he arrived at school. Imagine my surprise when I call home at 3:30 to see how school went and I hear Perry say he ate ALL of his snacks. Apparently he was hungry. Gahh!! What?!? His levels were fine when he got home. Everything was fine.

I'm going to be fine guys. This is going to be fine.

The Beginning of Our New Normal

Friday was a stressful day for us. We went straight from the doctor's office to the Children's Hospital in Portland. In retrospect, I should have stopped to get lunch for Ms. Gail and me but I had tunnel vision - got to get to the hospital! Ms. Gail and I did a lot of sitting and waiting that afternoon in the emergency room until they admitted us to the ICU. HD *hated* getting his IVs in his arms. Honestly I don't blame him. 
I really didn't like seeing him hooked up with all his cords and wires every where. Because all he had to eat was a little bit of oatmeal that morning, come 3pm, when we were moved upstairs to ICU, he was getting hangry. He was already cranky enough having been prodded and poked at for the past several hours, and then to be hungry on top of it... Unfortunately his next meal wouldn't be until breakfast the next morning. I'm pretty sure he asked the nurse just about every time she came in if he could eat yet. I felt terrible for him! I did think ahead and grabbed Perry's iPad before we left home, so that kept his mind occupied, as well as the tv with all the new kids movies on it. Ms. Gail was also a trooper. They brought in a small bin of Pet Shop toys and she just sat and played with them in the window until Perry came to get her around 5:30.

I felt bombarded with doctors and nurses coming in to talk to me about the game plan for the next day and what's going on in HD's body. SO much information all at once. It was re-stated several times that Type 1 Diabetes is an autoimmune disease where the pancreas doesn't make enough insulin (or make any at all) to allow the body to utilize the glucose found in the foods we eat. Also, *we did not do anything wrong* and *it isn't caused by the foods he currently eats*. Now that we know he has diabetes, we also know that JP and Ms. Gail each have a 1:20 chance of also developing diabetes. If they do, at least we'll know what to look for and already know how to help them.
I was under a great deal of stress Friday night because I was scheduled to work on Saturday. I never work on Saturdays, but I was scheduled for this one because there was no one else to work. They really needed me there because they were already short handed. I'm not the kind of person to just call off work. I don't know that I've ever called off work before. I already felt terrible about the thought of it, but I reluctantly agreed to at least work in the morning, even though Perry and I *really needed* to get started on our education and training. While I was at work stressing and panicking about my kid in the ICU, HD was moved out and down a floor to general care. When I arrived back to the hospital he was proudly holding his new dolphin balloon and SMILING! The night before I really had to work to get a smirk out him, so for him to be smiling...!!
I laid in bed with him for a little bit Friday night before settling down on the couch, but took full advantage of his bed the next day because he had one of his IVs out. I think he enjoyed his extra mom snuggles. Grandma Betty stayed for the training session too so she is able to take care of him when he goes to visit her in Montana this summer, without us. JP and Ms. Gail hung out at home with Grandma's sister and her husband. Thank goodness for helpful people! During our education, which was about 3 hours long, we learned how to check his blood sugar levels, dispense insulin, and correctly calculate dosages. I felt like there were numbers flying around the room!
 After the adult training session, I taught HD how to check his blood sugar and was able to walk him through the process of giving himself the insulin shot. He practiced on a foam star, and was very *I know, I know* about the whole thing. At dinner time, I walked him through the steps to check his blood sugar levels again, and he did really well with that portion. However, he was not about to have me give him his insulin shot. Until this point he was still getting his insulin via IV. I felt as if I was verbally wrestling a calf for branding. It was horrible. He was very firm on the idea that he was *not* getting another shot and *you can't make me* while his hands blocked me in every direction. The nurse just stood by and watched. It was pretty great...After about ten minutes of me insisting and him refusing, he finally gave in and let me put it in his leg. Talk about a great first shot for me...

His next dose came at bedtime, and knowing the nurse would be in soon, he got out his blood sugar meter and checked his levels all by himself. Obviously I was way proud of him, but I could also tell he was proud of himself. I made a big deal about it and wrote it on his dry erase board for everyone to see. His night nurse was so proud of him that he earned himself an extra cup of ice cream. (He didn't need to know he needed the extra carbs!) The kid was glowing! He followed his ice cream up with a double serving of sugar-free jello.

I would like to say the sugar got him going, but it was apparent he was feeling more like himself that evening. We had just finished watching "Princess + the Frog" (his choice, not mine!) and he had just consumed all his jello when he started pranking his nurse. Because he had one IV in, he was hooked up to one monitor still. When his arm was bent, his hose would kink and his alarm would go off. This would cause his nurse to come in and straighten his arm, turn the alarm off and leave. He caught on to this process pretty quickly. As soon as she would leave the room, he'd get that evil little smirk on his face and bend his arm so the alarm would go off. He was dying of laughter by the 5th time though I was trying to get him to stop by the third attempt, reminding him she had other kids to take care of too. Regardless, it made me happy to know he was feeling much better than the he had been in the past week!
I stayed the night at hospital with him again but this time he willingly shared his bed with me. Thank goodness because I was freezing in his new room. The nurse and I woke him up at 2 am to check his blood sugar level again, and I gave him a correction dosage before trying to fall back to sleep again. His doctor showed up around 9 to go over a few things, and then Perry and the rest of kids showed up just in time for the second three hour education session to start. HD was able to sleep in until about 9 when all the commotion began in his room. JP was very interested in all the pokes HD was getting.
Before we were able to leave the hospital, Perry had to show he was able to administer his insulin as well. He *hates* just the word needle so this a was a huge thing for him. His hands were incredibly shaky but he got it done! HD even asked for dad to do his lunch dose as well.

It's a lot to take in all at once! We left the hospital with lots of information and resources to utilize. The staff there was AMAZING! Right now my biggest concern is with HD's impulsiveness. He often comes home and just snacks at will so that's a concern for me. In the hospital he was in the mind set of "I'm sick now at the hospital but they are going to make me better so I only have diabetes for a little while." It was heartbreaking to him he say, "when I'm done having diabetes" when we were discussing Grandma caring for him this summer. It'll sink in. This is fine. We are fine. Everything is going to be fine.

Sunday, April 15, 2018

We’re off to the Children’s Hospital

It has been quite the “Friday the 13th” for our household. As I sit in the emergency room with HD hooked up to an IV and Ms. Gail playing quietly nearby, I thought I’d take a moment to type out what’s been going on here.

As I mentioned in my previous post, we had friends come to visit us over spring break. I was surprised when HD slept in until 8:30 in the morning on the morning they were set to leave. I believe I may have even whispered, “Praise the Lord!” because this kid is usually up at 7:00a on the dot so I welcome the extra quiet time in the mornings when I get it. He knew we were going to go swimming in the morning, so it was unlike him to over-sleep when fun is to be had! However, by Sunday morning he was sleeping in until 9:30am. He didn’t seen quite like himself but Perry and I figured he was going through a growth spurt and just needed extra rest.

A couple nights later Perry and I were discussing him after the kids went to bed. He’s always been a small, skinny kid, but Perry thought he was looking extra thin lately. I hadn’t noticed because I hadn’t seen him without his shirt off in quite a while. He also prefers to snuggle with his aunt instead of his mom...because of that, I welcomed him to sleep with me when he woke me up late Monday night. I knew he had gone to the bathroom before he went to bed so I found it a little off for him to go pee again (a lot a lot) before crawling into bed with me. He woke up in the early morning to go again and then once more when he woke up in the morning.
 I had been in contact with his teacher, checking in on how he was doing academically so while I was at it, I asked him how he had been at school the past couple days. He also noticed HD seemed a little out of it. With his exhaustion increasing, I made an appointment with his doctor on Friday to be seen. The appointment couldn’t come soon enough. He took a two hour nap that afternoon and then still went to bed at his usual time. He wasn’t eating and was just overall moody. The day before he bawled at Costco when we didn’t buy more protein bars. Tears running down his face. It was horrible.

I had a good idea of what could possibly be going on with him by Wednesday night, thanks to Google. I searched for fatigue, excessive thirst (he has a water bottle from his aunt he had been drinking out of, but I had initially thought it was just because it was hers and he felt “cool” using his aunt’s things), excessive urination, moodiness... it all pointed me in one direction.

By the time his appointment came around this morning, he was hardly eating anything and was very fatigued. I was going to send him to school and then scoop him up later in the morning but I knew he wasn’t up for it when it came time to wake up that morning. I had let him sleep in the living room curled up in my chair, and he was not bothered in the least by people moving around. I managed to get him to eat *some* oatmeal before we left, but he wasn’t feeling it.

I was fortunate to have Robin come along with Ms. Gail, HD, and me to the doctor this morning. When listing out the symptoms, you could tell his nurse practitioner already knew what was up before we ran a few tests. Robin was good at helping me explain the changes we’ve seen. She’s been such a great resource to have this past eight months. Before we headed to Portland, it was confirmed with his blood sugar reading of 440 (normal is between 70-120 before eating) it was very likely he has Type 1 Diabetes but would need to be confirmed by the endocrinologist at the Children’s Hospital. Without my previous research, I would have been shocked to hear it, but I kept it together pretty well.
I’m feeling terrible about his weight loss though. Last fall when I was making weighted blankets, he hopped on the scale and clocked in at about 51 lbs. At the doctor today he weighed a measly 43 lbs. He did not have any weight to lose! Without his shirt on, you can see each one of his ribs. When looking at his legs, his knees are like balls in the middle of a rod. His wrists are incredibly small. I just wish I would have noticed sooner. Yes it’s the winter and he wears long sleeves and pants and sweaters but still. I’m trying to not be so hard on myself.
Right now the hardest part is seeing him so out of it. He’s not my bubbly little boy who has the tendency to drive me nuts on occasion. I want my prankster back. As much as I’m enjoying his willingness to let me snuggle with him, this is not the child I know. As his mom, it’s incredibly hard to see him in such a long state of fatigue, crankiness, and just  looking overly weak and pale. We’ve got a bit of a hospital stay ahead of us, but we’ll be leaving with a bunch of resources and so much new knowledge to retain.