How is it almost August?

Time has been moving so slowly and flying by at the same time. August is in just a few days! I feel like this has been an endless summer vacation for the kids since they've been home since mid-March. Tomorrow our district has a school board meeting to discuss returning to school in the fall (or not). We got the okay from Lauren's immunologist to send her, praise God. I'm a little leery with her immune deficiency, but if school starts we need to send her. We stress about the childcare costs every summer and just can't afford to pay it during the school year as well. Ryan is at that weird in-between age of needing and not needing a babysitter. He'll be 11 in December. Lauren most definitely needs a babysitter. Finding a babysitter is a little tricky because Lauren has an, ahem, strong personality. We need someone who can be firm with her, yet still loving and kind. We need someone willing to help an 8 year old with bathroom needs. We are working so hard on independence, but the care she needs is still certainly beyond what a typical 8 year old needs help with.

I'm actually going down to part time at work next month. It's exciting and scary all at once. I've worked full time since Lauren was 3 months old and being a full time working mom and RN is such a huge part of my identity. That being said, I need to put my family first. Ryan is struggling academically and it's not realistic to keep getting home from work at 6:30-7pm four days a week, then make dinner, clean up dinner, supervise bath time for Lauren, and get homework done with Ryan...and get the kids into bed at a reasonable time. And possibly adding school at home during that time? Nope. I'm gone from home 11 hours a day (at least) including commute. I feel like a shitty mom sometimes because I am guilty of using YouTube as a babysitter during the times I am home with my kids just so I can get necessary things done...like straighten anything up, take a shower, make dinner, help one kid with homework, talk to my husband, etc. The good news is that I'm done with school (finally) so at least I am no longer also trying to do homework and manage a 4 credit class every 5 weeks while working, wife-ing, and moming. We are lucky to have a lot of help from family and I know a lot of families don't have that kind of help.

Ryan has been a dream child during quarantine. He's only expected to socialize with people he already knows really well (aka, our family). What socialization he does with friends is online, not face to face. He hasn't been anywhere so he's had zero exposures to trigger a PANDAS flare. I don't think things have ever been this great. He had a tonsillectomy June 22nd and has recovered beautifully. While in the recovery room we noticed a bullseye rash on his leg and we spend lots of time up north (wooded areas), so we treated for Lyme. We're working on getting medication right for his attention and focus. He has a tutor coming weekly. We're hoping 5th grade isn't too much of a shit show, but realistically it's going to be hard. I unfortunately just cannot help him with math. In hindsight, I clearly had a math learning disability. My brain does not do math. Even now at work with medication calculations, I have to get a coworker to help. I have to remind myself that I turned out to be a productive member of society and not worry that I'm failing my son.

Lauren is doing pretty well! We've worked on some useful skills so far during quarantine, like independence and self help. She's regularly getting herself dressed in the morning and in pajamas at night. We're working hard on not arguing about things or whining. I've become much more firm out of necessity, which means once I say no I generally stick to it. This is so hard! Often times, this revolves around Lauren asking for food and to sleep in my bed. We've improved her diet, which has led to a decreased use of Miralax. She hasn't lost weight, but her clothes are fitting noticeably better. She's exercising, either walking (she's up to a mile and a half at a time!) or riding her adaptive bike almost every day. She got some new braces for her ankles/feet that make her feel more stable when she walks. I'm going to order her some more "just right" readers because she's about ready to move up a reading level! It's amazing me to how well she reads. She's currently on Level D, but she's really mastered them (we have a set of 25 fiction and 18 nonfiction). She's sounding out big words in books like The Gruffalo.

My health is meh. I had a month-long period of feeling chronic illness free and it was glorious. Then 90+ degree weather hit and things got worse. It's hard for me to know which treatment strategies are working and which aren't, what's going to trigger an episode of gastroparesis and what's going to trigger my POTS symptoms. Or which disorder is causing symptoms on a particular day. My primary care doctor wants me to see a POTS specialist at Mayo Clinic but my insurance doesn't cover it. And I really don't think it would help. My cardiologist is great. A lot of medications are off the table because my blood pressure is low and my heart rate goes into the 40's while sleeping. It's hard to tell if IV saline works or if it doesn't. It definitely helps when I crash, same as it would help anyone. When my gastroparesis is really bad, the IV fluids certainly help because I can't take in enough oral hydration (or nutrition). The medications for gastroparesis have some pretty scary side effects, so I'm hesitant. I'm really hopeful that going down to part time at work will allow me to be more kind to my body.

We're facing the same dilemma as working parents all over the country...what the h-e-double hockey sticks are we going to do if schools don't open? Neither Greg or I have jobs that allow us to work from home. Good thing these two are extremely cute.