I kind of suck at writing lately. Which is a shame as I really like to write… but finding the time seems hard these days. Although really, what the heck do I do with my time??
Today is Wednesday. Wednesdays seems busier than most. Nora gets out of school early, Nadia doesn’t have pre-school but does have ballet in the morning, and Nora has gymnastics on Wednesday evenings. And starting next week Nora and Nadia will have gymnastics together! Oh, and it’s gloomy today. Raining, dark, not cold, but also not warm at around 40ºF.
Tomorrow Nora’s school speech therapist will be meeting with her. I have several concerns about her speech, stuttering, possible lisp, baby talk (a sign of PANS & PANDAS), and she still wants to spit out some chewed food, which I know is related to the muscles in the mouth and using them correctly. Or possibly a sensory issue with textures and such. Way back when we did feeding therapy with Nora, hopefully we don’t have to restart that.
Next Tuesday I’m getting back together with Nora’s teacher and their Area Education Agency representative to discuss the actual evaluation they want to do. I tell ya, this process is so long and drawn out! Just do the evaluation and let’s stop talking about doing it! Reminds me of all the meetings I had in my previous career life…
I will say, I think Nora is doing a lot better reading all the sudden. Maybe she doesn’t have an issue and just needed more time for it all to click… I guess we’ll see.
I’m still working with the doctor in Minnesota for Nadia’s PANS issues, and we are now having Nora treated as well. We don’t have an official diagnosis for Nora, but maybe it doesn’t matter. I’d rather treat the real issues than spend time deciding on a name for what’s wrong. In my mind, the real issue with both the girls is a combination of their crappy immune systems, and leaky gut, which are really tired together. Basically everything they eat and ingest, so not just the actual food, but the toxins on our US food, bacteria, viruses, the crap in water, the air, everything basically, leaks through their gut then into their blood and eventually crosses the blood/brain barrier. Their immune systems can’t fight everything like a ‘normal’ person’s could, thus we end up with all these random issues, including, but certainly not limited to behavior/mental health issues, skin rashes, sleep issues, stomach aches, brain fog, night sweats, God, the list is so long I can’t even really begin to list it all. So our treatment is varied as well, cleaning up their diets, which feels impossible with kids, cleaning up our environment to get rid of toxins, like our water filters, air filters, buying healthier of everything, and treating current infections and bacteria, plus making their immune systems stronger so eventually it can fight all this on it’s own. Which is all a lot easier said than done. I’m exhausted from preparing their medications and supplements each morning and night. They are sick of taking them. And even harder is cleaning up our diet. I’m trying to buy as much organic as I can. We are supposed to eliminate gluten and dairy, not because they are celiac, but because gluten and dairy cause inflammation in the gut in everyone. Of course the girls wants to live on white carbs. Probably part of the reason we are in this situation. So the eating is very, very difficult. And honestly, we aren’t completely gluten or dairy free. I fail daily. But it’s a process. Less is better.
Honestly, Nadia is doing really, really well currently. Not only is she wearing pants on a daily basis, she is also wearing underwear on a daily basis. THIS IS HUGE. I know it doesn’t sound huge, but it is, for us.
Otherwise, life feels very uneventful. There are only 35 more school days. Can’t believe that. I already registered Nadia for Kindergarten this fall, and Nora for 2nd grade. Can’t believe that either.
We had our final mental health evaluation for our surrogate process. Gosh, did I even mention all that?? Well, we did, so now we are in the waiting phase… We wait for the agency to find a ‘match’ for us. Our contract says they have ten months to do that, if I remember correctly. So we wait…