Ryan has been doing AMAZING! We treated him for a PANDAS flare and he's totally back to baseline. He was a bit snippy with me yesterday and today, and apologized unprompted both times. The funny thing is that now that he's back to his old self, his little quirks are back in full force. I love it because that's how we know he's happy. He toe walks, makes noises all the time, and is big into physical affection. He actually cuddled me today while we were at OT waiting for him to get called back. It was awesome!! OT is working on handwriting and core strength. He's currently in a day camp, Minecraft Camp, at our local rec center. So he's learning to to build a Minecraft server, something with LAN, coding, and other computer words that mean nothing to me. But he loves it! He called me after the first day and said, "Mom! I wasn't nervous at all and I made friends with everybody!!!" The excitement in his voice made me tear up. I found out he's the oldest kid in the class by a year or two, and I was hoping for more same aged peer interactions, but I'll take it! He has a week off and then goes to another computer camp the following week. I love that we've tapped an interest for him! We've tried every sport under the sun (gymnastics, swimming, hockey, soccer, baseball) and he just does not do well in team sports. He is starting to try golf with my dad and he really likes it. I've noticed a little more struggles with eye contact with adults lately, so that's taking a little social coaching, but nothing we can't handle. He has a good friend in our neighborhood that really seems to draw Ryan out of his shell, so I am super hoping they get put in the same class in the fall. At his school, every grade has 4 classrooms, so it's only a 25% chance. He's still a giant and is probably around 4'8" tall and right around 100lb. I bought him some school clothes today and I tried on a shirt of his that we might have to fight over, LOL. His feet are officially bigger than mine now (and I wear a women's size 8!)
Lauren has been awesome. She's walking so well, but her gait is terrible. She has the cutest little walk on the entire planet, but it's hard for her to get from point A to point B. She's wearing her brace probably 75% of the day while she's awake. We're hoping she might lose some weight now that's she's walking so much better, after not walking for 3 months. It goes without saying, obviously we view her weight from a health standpoint only. I am going to set up an appointment with a dietician to discuss portion size, food choices, etc. She'll eat pretty much anything but she's been eating adult man sized portions since she was about 10 months old so I admit I'm not really sure how much I'm supposed to be feeding her. She doesn't have a "full sensor" and would legit eat 24/7 if I let her. Today I was successful with chicken breast and veggies, along with salad for dinner. She had grapes for a bedtime snack. She asked for chips, but I said no. I'm so proud of myself! This is hard for me! She's in speech therapy, occupational therapy, and physical therapy each once per week for the summer. Hence why we are so busy! I was able to coordinate her PT and speech on the same day, and Ryan gets OT while she's getting speech. This will not be a surprise to anyone who knows her, but she loves speech therapy and hates physical therapy. We had to see hem/onc last week because her recent bloodwork was off enough to warrant a consult. Can we stay stressful?! We LOVED the doctor and she said, "I love her, but I don't need to be her doctor." Best words ever. Behaviorally she's been doing okay. We increased her thyroid medicine recently due to her labs, and her energy has majorly increased. Along with that, she's a little more impulsive and has started pinching and scratching again. She even bit my stomach on day. She really hasn't done that it months, so we're weighing the pros/cons of increasing her Tenex. Tenex can cause weight gain. But we need her behavior controlled, especially as school starts up. I think I've been pretty transparent about her behavior struggles, and I feel like we have a delicate balance of her amazing personality shining through vs her ability to be behaviorally successful in her community (home, school, church). She's been bolting away again, which might just be because it doesn't hurt to walk anymore. We were almost spoiled by 3 months of her not walking because at least we didn't have to worry about her eloping. Tonight my sister and I took her to the park and she kept trying to "climb" down a part of the park that is actually a straight drop from the very top of the equipment, probably close to 15 feet high. I tried to physically block it, which made her more angry. My sister ended up sweet talking her down. But verbally she has been SO NICE! She tells me she loves me about 50 times a day. She's nice to her brother. She gave Monte a giant hug today for not eating her dinner while she went potty. Overall, things with her are pretty dang great.
I've been dealing with health challenges myself. I've lost 30-35lb in the past year, most of it in the last 6 months and totally un-intended. I now weigh 112lb, which is less than I did when we got married 10 years ago. I have some pretty significant GI issues that initially got better with a gluten free diet, now it's hit or miss. I've been having shortness of breath with minimal activity, dizzy spells and periods of significantly elevated heart rate (as high as 144 bpm). The fatigue is unreal, but I've been pushing through it as best as I can. As a result, I've earned myself a GI consult (later this month) and a cardiologist. So far with cardiology I've had a visit, an EKG, and I currently have a holter monitor in place. I go next week for a tilt table test, the following week for an echo, the following week for another follow up. And I'm following closely with my primary care doctor. It's been extremely frustrating to just plain not feel good. It impacts my ability to care for my kids and enjoy life. We're currently thinking Crohn's vs Celiac vs POTS or maybe even something completely different. It's really hard feeling like I'm being a bad wife, mom, and friend but I really am doing the best I can. The best way I can say it, and pardon my french, is that currently I give no fucks. I don't wear makeup other than to work. If by rare chance I'm at home with nothing to do, I take a nap if I'm tired or I go to bed at 9pm. My house is often a disaster because it's one more thing I have to fit in at the end of the day and sometimes I just can't. I'm snacking constantly to try to stop losing weight. Gluten free snacks are not as as exciting, but I have found some great things to eat that are a little more calorie dense. If I feel like I can't physically or emotionally do something I just say no. I've mostly been doing what I have to do for my kids, my family, and myself, and that's about it. My parents help a lot when they can. Greg's parents have been lifesavers when we're up north and I can't parent the way I should. Greg has been amazingly supportive through this which I appreciate more than I can say. He's working 6-7 days a week and still being an amazing partner at home.
Overall it's been a pretty great summer and I think we've made a lot of fun memories. My hand is getting better, but my nail is still weird, the tip of my finger is numb, and I have random days of pain. I'm excited for the fall to get back into our normal family routine!
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