Day #34 post IVIG #5
IVIG #4 did little to nothing for Max. It seems the Bear is more vulnerable to odd numbers when it comes to Max. #2 didn't do squat either. #5 seems to be working. He is starting to be more open to eating foods he doesn't much like. His tics are down 90%. He plays happily with his siblings and takes gentle care of Auggie and Lena. Last week he went o the science center and did a ropes course even though he was afraid. We're not anywhere near 90% but there's hope.
And there's the cannabis.
He started on medical marijuana two weeks ago and so it's difficult to separate out the IVIG effect versus the cannabis. Whatever it is, I'll take it. Tics are down. He sleeps now. Appetite is up. He laughs more. His older brother is also on it and his aggression and irritability are down. And he's eating less. I assume because his overeating was an OCD thing. The marijuana is balancing them both out. And so, our family is balancing back out.
Now that Max is doing better, I am doing better. I have started cleaning up my eating and working out again. Partly this is due to the practice hiring a full time receptionist (yay!) and my actually having time to do anything other than work and manage my kids' PANDAS. And a big part of it is the fact the kids are improving.
I find it really, really difficult to be healthy when my kids are crunking. It's illogical and unhealthy. My husband says it means I'm co-dependent. If so, I imagine there are a lot of co-dependent PANDAS and autism moms out there.
I am seeing the benefits of my returning to healthy eating and working out. Auggie is bonkers for carrots now.
The house is never without fruit and veg to snack on. And Lena is working out with me. Soon enough I will ensnare Mies and Max to join me. Mwa ha ha. They've no idea my scheme. Where mom goes, so goes the family. For better or worse.
I have also come to the end of my urgent care side job days. My last day is May 31st. So long.
It has been a long road here. Over the past year I have run my practice full time while working urgent care full time. I then went part time and eventually was able to hire our amazing nurse Jo and now our receptionist Courtney. And soon there will be no urgent care shifts. It's a leap of faith. This entire practice is a leap of faith. But one worth the risks.
Our daughter Lena has weaned off both her antibiotics and we are hoping a round of steroids will get her to the point she no longer needs ibuprofen. Mies and Max are down to prophylactic dosing of only one antibiotic. Mies is doing so much better than a year ago and is almost off of his antipsychotic, something we have not been able to do since he started it nine years ago.
It could all fall apart in a moment. It could all come to a halt and we could never see that 90% finish line we are hoping for with Max. The exhaustion of my practice takes its toll. But we have made it through another winter and spring is here. Soon it will be summer and the germs will dry up under the sun. The Bear will go into hibernation and we will steal what joy we can until the leaves start to fall again.