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.

Fall

It’s officially fall. I think… Feels like fall here anyway, only 61F today. So certainly not cold, but definitely sweater weather!

I don’t have a lot of updates on Nadia’s health. Yesterday was her four-year well-child exam. And they confirmed my fear. She is losing weight, about 10% of her total body weight although wants to eat all the time. Even wakes in the middle of the night to eat. They ordered some blood tests, but I still need to take her for the blood draw. She got 2 vaccinations yesterday, plus the flu shot, so I felt like that was enough for one day… Otherwise her health is the same. She is still having lots and lots of meltdowns, lots of sensory processing issues, some OCD tendencies, still says she feels “wet” whenever she goes to the bathroom. She used to wipe and wipe and wipe, now she refuses to wipe at all, says that makes her feel like she has to go potty. Eric talked to his partners and they decided to try Ditropan. Per WebMD, Oxybutynin is used to treat certain bladder and urinary conditions (e.g., overactive bladder). It relaxes the muscles in the bladder to help decrease problems of urgency and frequent urination. Oxybutynin belongs to a class of drugs known as antispasmodics. So far I have noticed she asks to go to the bathroom less, which in itself is helpful, as every trip to the bathroom leads to a meltdown.

Aside from the weight loss, Nadia often complains large areas of her body itch, although we see no evidence of a rash or other irritant. And if you Google those two symptoms, scary stuff comes up. So for now, I’ll wait for the blood test results. We are also still waiting on the pediatric psychiatric referral. Our insurance denied our pediatrician’s request for us to be seen in Iowa City, but approved for us to be seen in Des Moines at Blank Children’s Hospital. I’m not as familiar, as we are in Iowa City all the time, but it will have to do. We will also see a developmental pediatrician there to screen for more general issues… whatever those are… I’m guessing Autism and such, which I don’t even want to think about right now.

Nadia still isn’t sleeping well. Which means the entire family isn’t sleeping well. I can get her to sleep, by rocking her. It’s now her only way of falling asleep. She does not like her bed, does not want to sleep in any bed, and certainly doesn’t want any covers if I can get her into bed, which is usually me laying her in bed after she falls asleep rocking. Getting Nadia to sleep though isn’t the biggest issue. It’s keeping her sleeping. She wakes several times a night, and almost always exactly at 4am. What the heck is with 4am?? And no matter how I’ve tried, she won’t put herself back to sleep. Although neither will Nora, so perhaps it’s a me issue. At this point I don’t care how any of us sleep, just that we sleep!

In other news, Nora seems to be adjusting to kindergarten well. Every morning she says she doesn’t want to go, but walks in without crying and seems excited to tell me about her day at pickup. Nadia is not adjusting to preschool well, big surprise. This morning she cried so hard I thought she might be hyperventilating. She says she doesn’t like the teachers. But I know the teachers, they are awesome, Nora even thought so… Nadia just doesn’t like being away from me, but to the extreme. I’m anxious for her referral appointment so we can talk about Nadia’s anxiety. Wonder where she gets it…

Life is slowing getting back into a routine. I’m back in Grove (Women’s Bible Study) on Tuesday mornings and MOPs (Moms of Preschools) on Thursday mornings. Nadia has speech and occupational therapy on Wednesday mornings, and both the girls have ballet on Thursday nights, although so far Nadia hasn’t been brave enough to attend. We’ll see, I’ll try again with her this week. I now have plenty of time to clean and organize the house, but God knows I’m awful at procrastinating. The laundry is staring at me right now… I emailed an interior designer that one of Eric’s partners used for their new home. I’m a little scared. An interior decorator sounds so… expensive. But I honestly have no clue where to begin on purchasing furniture for this house. The help would certainly be appreciated, if even for only a few main rooms. Below are pictures of Nadia’s bedroom curtains and bedding, my attempts at picking a paint color. I think I decided on Intimate White, which is number 8 on the paint samples. Oh, and the house we just moved from is going on the market TODAY, so let’s pray it sells quickly!

We went to a pumpkin patch on Saturday. Thankfully Nadia agreed to wear underwear, since she is stuck on dresses right now. And no coats. What am I going to do when it gets colder??? We had fun, although Nora was sad she couldn’t go down the giant slide all day.

And here are a few other random pictures I found on my phone, several taken by Nora.

Ah, somehow it’s 1:30 already and I’ve accomplished very little today. I guess I better start planning dinner!

Anxiety & COVID

So much to say, and so little time. Maybe I should start dictating these posts as typing it all out seems to take forever, and a lot of energy!

I don’t even know where to start… I guess with the fact that Nadia’s sensory, OCD, and general anxiety issues are so much worse since school started. Did I ever mention how Nadia constantly thinks her underwear is wet, even when it is completely dry? She goes to the bathroom very often and will sit and wipe and wipe and wipe. I mean like 30 minutes or more, crying that “it’s wet”. I have no idea how to convince a child it’s not wet, when clearly she/her body feels it is wet. I do think part of this is sensory, as now she is to the point where she won’t even wear underwear. But given it’s gotten worse since school started, there has to be an element of anxiety mixed in. Strangely enough though, her messy hands issue has changed in the past two days. She still wants a wet wipe with every meal/snack, but this morning when she ate a bagel she was extremely messy with it. Stuck almost one whole hand in her mouth and had cream cheese everywhere. Very uncharacteristic of her. We are still doing OT for sensory issues, but so far our visits are limited to 30 minutes of playing with shaving cream each week. I have no clue if it’s helping.

Refusing underwear is quite an issue though. How does one go anywhere when they will only wear dresses? And no underwear. Last Thursday she didn’t go to school for that reason. Her epic meltdown was just too much, couldn’t get her to get dressed, get off the potty, stop screaming and kicking… And now she is walking around with one hand holding herself, like kids do when they have to pee really badly. We checked her urine again, no UTI. My mother found an interesting article though… Sounds like exactly our issue, called phantom urinary incontinence, and strangely enough, the actual medical research was published by a good friend of my husband’s who he completed residency with. Eric, though, had never heard of this issue, perhaps because it’s extremely rare, and while Eric does see a lot of children, he is not primarily a pediatric urologist like his friend. So… the treatment… is apparently what we already are doing, go to the bathroom often, treat constipation, which she doesn’t even have… I guess this is a phase. Ugh.

A few weeks ago Nadia’s pediatrician referred us to a pediatric psychiatrist in Iowa City. Who knows when that appointment will be. I asked her doctor yesterday what we can do in the meantime, as this is completely disrupting our lives, not being able to leave the house, spending sometimes several hours a day trying to calm Nadia. They said they would push the referral through ASAP. Whatever that means. Clearly going back to school is causing her extreme stress, maybe on top of moving to a new house. And naturally as I mom I want to protect her, so my first instinct is, if school is too stressful to the point where we are considering medicating her, maybe she needs a break from school. I mean, it is only preschool. But doesn’t that just push the problem back in time? Whenever she would go back to school, wouldn’t we start the stress and separation anxiety all over again? Doesn’t she actually need to go to school to get over this stress of it being new? I’m so confused!

So on top of all that. As if that isn’t enough to deal with, as if I’m not still living in a pile of packed boxes… and rooms that need furniture… Yesterday I was tested for COVID. The girls and I woke up yesterday with sore throats and stuffy noses, and I also had a headache, diarrhea, and chest pain with deep breaths. I knew school would send them home, and their current policy is they need a doctor’s excuse before they can come back to school, so we headed to urgent care. Strep tests for all three of us was negative so they wanted to rule out COVID. Apparently this place’s policy current is to only test one family member and assume the rest of those in the household would have the same result. (Um, that doesn’t seem very precise, but okay!) So they picked me, as who wants to test a 4 or 5 year old… The crappy part, the results take 3-5 days during which time we have to isolate from everyone. I know they have tests as fast as 90 minutes, so what a waste of time… Anyway, we are home, again, for a few days until we get results. And God only knows what happens if it’s positive.

July 10th

Wow, July 10th. I haven’t written in over a month. I have no idea how that is possible. The month of June somehow flew by, but yet each day felt like 17 years.

June was basically the same as May, only hotter. We played in the pool a lot, see some pictures below, as we still aren’t going out in pubic. It’s been somewhere around 119 days in isolation. I keep saying I might lose my mind. Perhaps I already have. Today is especially bad, it’s near 100F so we haven’t been outside much… and they are obviously sick of being stuck inside. They fight. Nadia is quite physical. I feel like I keep pulling her off Nora. No amount of sending her to her room does any good. I suspect a lot of Nadia’s behavior is sensory related, more on that in another post, but regardless, we need to discipline. And I have no idea how, as nothing I have tried works. I know we can’t stay inside forever, but with cases rising again, I’m just not all that comfortable taking the girls out yet.

In other news… WE BOUGHT A HOUSE. Eric keeps teasing me that it’s our annual real estate purchase, as we seem to move every one to two years lately. It’s a really pretty house, I’ll post a few pictures once we are moved in. We close July 27th but the movers don’t come until August 8th. I guess I should be packing.

Nadia had her first occupational therapy (OT) session last week. They gave us a reoccurring appointment, every OTHER Thursday for 30 minutes. I’m annoyed. I don’t feel like it’s nearly enough time, as I can hardly tell them my concerns much less have them work on anything with her. I feel like they are just too busy to really give any patient the attention they need. Maybe I still need to consider another therapist in another nearby city. Nadia also has a speech therapy appointment at the end of the month. She was in speech, and actually physical therapy also, when she was younger, but I feel like she still needs some help with speech. She doesn’t talk much, although can, but sometimes she acts like she wants to say something but can’t think of the word. Other times she will make a noise or point for something she wants. We’ll see what they have to say.

I can’t think of what else is new… since we don’t leave the house much. We did go to my sister’s house for the 4th of July which was fun, lots of good food! Otherwise, same old same old here playing LEGOs!

It’s June!!!

How it can be June, I have no idea. May took three years to pass I swear. Our state, Iowa, is starting to open back up, but we are still staying put for the most part. We have been out once really, for Eric’s birthday to dinner which was last week. It felt very weird to be out, almost wrong. And the girls were kind of wild, but of course, can you blame them after being stuck at home for months?? After Eric’s birthday dinner he enjoyed a homemade chocolate cake at home. Super yummy!

I feel like I have lots of updates… probably because I haven’t written in quite sometime, but also because I feel like all the things put on hold due to COVID-19 as slowing coming off hold status.


The occupational therapy clinic FINALLY called and Nadia’s appointment is next Monday morning. I’m nervous, and I so wish Eric could come too, but they only want the patient and one parent due to COVID. More to come on this!


And… the IVF clinic called to make an appointment to start the gestational carrier process from their end. I have no idea what to expect, I guess we will find out. They suggested some appointment dates in July, but Eric is on-call those days, so I’m waiting for them to call me back so we can figure something out! Stay-tuned!


Alright, back to cleaning the kitchen and laundry, which I’ve been putting off forever. Seems the more time I have, the less I accomplish with poor motivation. I’ll leave you with a few more of my favorite photos currently on my phone.