Almost Christmas

How is it almost Christmas??? I can’t even tell you what happened to the past several months since school started. Nadia turned five and now Nora is already half finished with first grade! I have lots of wrapping to do yet, gosh, I don’t even know if I’m finished shopping for everyone! I’m even behind with Christmas cards, which are actually happy new year instead, which aren’t addressed yet. I’m hoping to do some baking with the girls this week, as they only have school today and tomorrow, and maybe watch a cute Christmas movie. One of these years we will slow down and enjoy the season…

School has been a struggle. Nadia is actually doing really, really well, but she’s only going to the actual preschool sessions which are in the afternoons four days a week. The rest of the time she is home with me. I wonder how she will do next year in kindergarten full days..? Nora is still very, very sad each morning at drop off. Her separation anxiety seems worse than Nadia’s lately. Sending Nora back after the long Christmas break will be hell.

We had COVID at the beginning of November. And while it was an incredibly LONG ten days home together… we survived. I felt really crappy, but thankfully had been vaccinated and thus survived without any medical intervention. The girls seemed completely fine and rather enjoyed the ten days home playing Barbies.

Nadia’s health is ever so slowly improving. Although with anything, there are setbacks along with the small steps forward. She’s still on a ton of medications, immune therapies, and supplements… And now we’re focusing on eliminating gluten, dairy, and processed sugars. Which is basically her entire diet, so it’s been very, very hard for me. I really am trying, but feel like I fail every time she refuses a new food we try, and hence I go back to the old standby crap that is awful for her.

We’re starting to investigate Nora’s health, just to make sure we aren’t missing anything with her severe separation anxiety… more to come on that. We have some lab orders, but I’ve been dreading it, so maybe over Christmas break as she needs to be fasting for them anyway.

Eric has been working like crazy, but thankfully is off for a week starting Christmas Eve. The time together will be nice as I feel like his schedule takes him away from home more often than not. How long until he can retire?? Ha, just kidding. Years and years I assume.

I wanted to share a few pictures from the past several months, but I got a new iPhone and I now realize it’s taking pictures in some weird format that isn’t compatible with this blog. Ugh. I need to figure that out. And I’m not that techy, so wish me luck.

I’ll write more again soon…

Orientation & First Days of School

I don’t even think I wrote about the last days of school, or most of the summer… But… Moving on! So they say, the past is the past!

Orientation was the Friday before school started. Nadia’s preschool session was during the day, so just the girls and I went as Eric was working. Nadia seemed a little hesitant but she showed me around, pointed out where she painted last year, where they wash their hands, have snack, etc. I wouldn’t say she seemed excited, but she didn’t appear terrified either, as I kind of expected. It’s all the same teachers, so that’s good, but mostly new students, as I think most of her previous class went onto kindergarten. I just didn’t think Nadia was ready yet… she needs another year to heal and prepare I think. God, please let her be ready next year…

Nora’s orientation was in the evening, so all four of us attended. We met Nora’s teacher, got a bit familiar with her classroom and walked around the school a little. Her teacher seems super, super nice, and so far Nora really likes her. Nora even went as far as to say her teacher is funnier than daddy! Imagine that!

So aside from Nora now being sick with RSV and missing most of this second week of school, I’d say things are going well for her so far. She does whine a bit each morning that she doesn’t want to go to school. Same as last year. She must be fine once she’s there though, as always smiling in pictures and when I pick her up! I did feel horrible the very first day though. The kids all lined up outside with their classmates, and Nora had tears in her eyes, waving to Eric, Nadia, and me. It was heartbreaking. But nice to see her teacher comfort her, I knew she would be fine.

Nadia has been attending just her afternoon preschool sessions so far, so not the morning daycare portions. Which is fine. I wanted to ease her back into school, and plus, I’m home all the time, she doesn’t have to attend the daycare part.

We’ve had a few tears with Nadia so far. She whines most nights, and days too, that she doesn’t want to go to school. The first few days she happily walked in, and according to her teachers, did very, very well. She is always smiling when I pick her up and all excited to show me her work from the day, paintings and such, so I take that as a very good sign. Still no underwear or pants. Her teachers said it would be fine for her to attend school in long dresses, and so far that has been okay. She is learning to sit properly in a dress. Scares me for next year though, when she has a uniform. Or heck, even this winter when it’s cold and they go outside to play for recess! Ah! What if she is still claiming the ‘wet’ feeling then??

Yesterday when I dropped Nadia off she was crying, and I felt horrible leaving her there so upset. The thing is though, she wasn’t just upset about school, she was upset about her socks, saying they felt strange. This sock issue isn’t completely new. We’ve been dealing with sensory issues for years with Nadia, although lately, especially since school started, they seem worse. Anxiety about school I assume is the cause. I also question how much is strictly a sensory issue, and how much comes from the PANS/PANDAS/Lyme. Anyway, yesterday we must have changed socks three times, and even then she was still uncomfortable. I have purchased every single kind of sock I can find, including multiple brands made for sensory issues. Nothing seems to help her. I’m at a loss on how to help Nadia. So I do the best I can, change socks multiple times a day, keep fixing them and re-fixing them, changing shoes, whatever calms her. Although sometimes nothing calms her 🙁 I wish I knew how to help her. OT for years and still I have no real fixes for Nadia. In fact, I don’t know if we’re going to continue OT, as I’m not seeing improvements, so what’s the point, you know… I

’ll post again soon about Nadia’s Lyme/PANS/PANDAS progress. Oh, and about her 5th birthday too! For now, I guess I should find the girls and myself some lunch.

RSV

I know I don’t write enough, and then when I do I feel overwhelmed with how much I want to say, as how much time has pasts, all the pictures I want to share…

We’re a week into school. And Nora has RSV. Thankfully not COVID. I guess. RSV can be bad in the very young and old, but I think Nora will be just fine. So far she has a sore throat, runny nose, nasty cough that sounds like croup, and a fever that seems to come and go, mostly coming on at night. This is her second day home from school. It’s a Wednesday, which are normally their short days anyway, and Nadia doesn’t have preschool on Wednesdays, so she is home as well. I’m hoping Nadia doesn’t get this, but… how can I really keep the girls apart? I mean, they were together before Nora had symptoms, so obviously shared germs already. Nadia was supposed to have her post op appointment tomorrow for her ear tube removal, but I cancelled that as I can’t take a sick Nora along. And Friday was supposed to be Nadia’s first of three behavioral health appointments in Iowa City… If you remember she was referred to them by the autism clinic when they didn’t know where else to send us, which was months and months and months ago. I hate to have to reschedule. But I’m not sure what else to do, and plus, Nadia might be sick by Friday. It’s always something, isn’t it?!

It’s a gorgeous day so we’re out on the patio, me typing away while the girls search for roly-polices, or pill bugs I guess they are also called. Yuck! I don’t know how they are my daughters! At least we are getting some fresh air and sun out here!

Doom & Gloom

The doctor I saw at the pain clinic was very, very nice. But he didn’t have a lot of encouraging words for me.

Basically he said there isn’t really a fix for me except surgery, although even that isn’t a fix per say, but more of a more permanent correction for the pain.

As far as what the pain clinic can do, he offered a cervical epidural but my insurance requires I try physical therapy first before they will pay for injections. Although an epidural isn’t a fix either, just a fix for the pain. I’m not sure what PT does for this, I guess I will find out. I’m a little nervous though, as PT’s around here are full with months of waiting lists, so who knows when I’d even be able to start treatment.