I’m still here

I haven’t written in a really long time. So much going on, you would think I’d want to get my feelings out, or at least document life. But… I don’t know. With a very long to do list most days, this sometimes felt like one more to do.

First, our surrogacy journey. Our current agency, ARR, which is located in Chicago, IL, and was only really our agency because it was the only one our fertility clinic would work with… has been acquired by KindBody or KindEOS or something. Which to my understanding is a large corporate surrogacy agency. I know very little after them. But I also know that the communication they have sent us lately, about this transition to the new company, has been anything but organized. The would send us one thing, demand we sign new documents, require thousands and thousands more dollars, and then the next day send another email that said all that was wrong and there is a new policy that applies to us instead. They seem like they have no freaking clue what’s going on. Which is not how you want to feel when you’re thinking of having someone CARRY A BABY FOR YOU! So we are cutting ties with them and seeking out some new options with an agency in Iowa. So far all I’ve done is fill out their initial application and we’re in the process of scheduling a phone call with them for next week, I think. So much money and time wasted. But such is life.

Valentine’s Day was yesterday. And can you believe I didn’t take a single picture of my girls and all the ‘things’ we did to celebrate?? Clearly I need to set my camera out and make a point to take some darn photos. But I guess at least I can say I’m living in the moment, and not behind my phone. The girls wanted a fancy dinner, and to them, fancy meant something similar to Thanksgiving. But since a whole turkey takes awhile to cook, we did a chicken instead, but still with potatoes and gravy, dressing, brussels sprouts, rolls, fruits and veggies, and an ice cream cake from Cold Stone for dessert. Nadia ate well. Nora demanded mac and cheese. I have no idea how to get that child to branch out and eat more healthy foods. If feeding therapy way back when didn’t help her, is there any hope?

Which brings me to how the girls are doing. And I’m happy to admit, incredibly well! But… I contribute it to the ton of hard work I do every single freaking day to get their supplements and medications into them. And it’s exhausting. Seriously. Most night as I’m spending 30 minutes or more getting everything ready for them to take I just want to cry. To give up. This is so hard. The time, the money, the organization, it is all so much. But I do believe it’s working. Along with a lot of other things, like filtering water, filtering air, cutting out as many toxins as possible… And the Neurofeedback! Nora has had 26 sessions now and is doing so well. Nadia has only done 13 I think. She is harder, younger, and doesn’t want to sit still as much, obviously. But we’re getting there, slowly but surely.

My business, The Mended Mind, is doing so well! I’m busy, as busy as I can possibly be, as busy as I really want to be. And making money! Which is great. It is. But my goal was never to make money. It was to help people. Which I am. I’ve been really conflicted this week though. Someone I rented a system to wants in on my business. And I’m not sure how I feel about this. She saw great results and thinks it’s amazing. I mean, it is. I wouldn’t have started this venture if I didn’t really believe that. But this person who wants in, I don’t understand how they can be in… I don’t need investors. I don’t need employees. I’ve got it all under control in the means I want it under control. My first and only concern has always been to help people, but I don’t believe this person’s first concern is the same. I think it’s money. And that is not where I want to head this business. Pay off the systems, yes, but not to get rich. I fear she doesn’t understand my back story, my years of heartache with my daughters, which led me here, why I even got into this. I fear she just wants to take my years of research and run with her own ideals and her own benefit in mind. I see no way for her to benefit me. Am I looking at this wrong? Well, how would you know, without knowing the whole story. But I don’t even understand her whole story. It just doesn’t feel good. And I get it’s business. Anyone could start this same business, just as I did… But if they start their own, that’s their business. My business is based on helping people. Period. I’m just feeling torn, like someone is crowding in on me. Does that make sense? So I’m feeling lost. And maybe even a little sad that someone would turn helping people into money.

Update

I don’t have a lot of time, but wanted to share a few things.

Yesterday Nora and I were in Iowa City for her learning disability testing. They diagnosed her with dyslexia. Which wasn’t a huge surprise, but seeing it written on her discharge papers made it feel more real. So of course I’m sad. I’m not sure what an official diagnosis really changes, waiting to hear back from her school and special education teacher.

Last night my 16-year-old nephew ran away from home. From what we know, he took his parents jeep and left around 1:45am with some personal belongings and any money he could find in the house. So it’s been almost 24 hours since he left. The police have searched everywhere, although now the search has been expanded to nationwide as it’s possible he isn’t still in Iowa. I have no idea what to think… If you’re the praying type, would you mind saying a little prayer for Ryan tonight?

Letter Back to Agency

So this is the email I sent back to our agency. I guess it speaks for itself.

Good afternoon, 

Eric and I carefully reviewed the potential surrogate’s file, and I must admit that we are very sad and quite disappointed. When we first met with your agency months and months ago we were given the impression that your gestational carrier candidates are extensively vetted and held to the very highest of health standards. That said, we have a few concerns:

  • The potential surrogate has been pregnant five times and suffered three miscarriages, one with her current partner. 
  • The potential surrogate has had two c-sections and her file indicates her OB/GYN did not approve her as a candidate for a VBAC. 
  • The potential surrogate hasn’t given birth in over nine years. 
  • The potential surrogate currently has a Mirena IUD. Even if that is removed this week, the hormones can remain in her body and alter future pregnancies six or more months into the future. Plus, she isn’t having periods. We have no indication her body would cycle normally. 
  • The potential surrogate was rejected by Surrogate Solutions just this past April 2022.
  • Last, and possibly the most concerning complication, the potential surrogate’s file mentions Chorioamnionitis, a very serious infection of the amniotic fluid. 

We are not comfortable working with a surrogate with this many complications. I’ll follow up with a phone call soon to discuss next steps for Eric and I. 

Thank you,

Stefanie

So Much at Once!

Ya know how life is so boring, and then all the sudden, everything happens at once?? That’s today.

With the girls both in school now, Nadia in kindergarten and Nora in 2nd grade, I’ve been finding myself with a lot more time. Which means a lot more time to ponder my life and what I want to do with it. I definitely haven’t been cleaning the house more, LOL. But as my sister told me last night, I don’t have to do anything. But a life with no goals or dreams feels somehow unfulfilling.

So here’s what I’ve had up my sleeve for the last few months… I’ve been researching and studying for certifications to open a Neurofeedback Center. Haven’t heard of it, here’s a very short clip, but seriously, just google it, there is a ton of information out there. Like, so much information, this is just once tiny look at what it is.

So I’m super excited. I already have one system which I’ve been treating myself and my family? I looked at commercial rental space, and have a place I really like picked out, although haven’t signed a lease yet, so it might be taken by tomorrow, LOL. I have some furniture in mind, a plan to buy more of the equipment I need… you get the idea. Website in the works, although I still need a good name for the business. Anyone creative out there??? And there Nora and I am, all hooked up!

Also, a few years ago I look into a program at The Institute of Integrative Nutrition. Years ago it felt too overwhelming, as I was just starting to learn about health and how eating plays such a huge role in our overall wellness. But now, after a few years, and lots of learning from my daughters’ practitioners, I think I’m ready to officially take all this knowledge on and become certified as a Health/Life Coach. I know, not where I thought all this would take me… But I’m super excited. Our family has been through so much hell with our girls’ health issues. If I can help even one person, make our journey to health a little bit easier, than awesome! The program is all online, but takes a year, so not something to jump into lightly. I just got off the phone with the advisor and we talked about me starting with the next session, which begins later this month.

And then guess who called? The director of our surrogacy agency. They want to present a surrogate candidate to us today. I have no idea what to expect, but I’ll let you know!

Ways to Help…

I’m trying to figure out a way to use this blog for good. Any ideas? I have a lot of knowledge about PANDAS and PANS, raising preemies, etc… I want to help others. But I’m not a doctor. I can not legally give medical advice. I can share what has worked for us… Or any general questions about our experience others might have. I can give recommendations for doctors, although those I know are limited to the Iowa/Minnesota area. So… I added a link on the bottom right of my homepage to book a chat session with me. Or the link is also below. Stay tuned for more ways I’ll be giving back 🙂

Book Chat Session with Stefanie

Appointments, Appointments

The ‘nanny’ I hired over the summer sucks. I’d fire her, but we have only this week and next with her yet before she moves back to college for the school year. I’m home currently, in our office, while they are playing hide and seek. The girls can’t find her so they are in bothering me to help them look for her. I know she is in one of their bedrooms, and thus can hear them bothering me. Wouldn’t you just come out to prevent the mom from being bugged? Clearly she doesn’t understand why she was hired. And honestly, for two weeks, I don’t have the energy to train her.

Nora’s tutoring is going well. They are on lesson 7 of 12 of the Foundation in Sounds program. I was afraid at first Nora wasn’t catching on, but she must be now. I’m excited for her to realize her own progress! Hopefully a boost in her self-esteem.

Last week was Nora’s first play-therapy session, and our next is this Thursday. Hard to say after only one visit, but as we walked out Nora said she loved the woman. So that’s a good sign. The only downfall is that the woman is a 35 minute drive each way, I know, nothing to you who live in bigger cities, but that’s 35 miles to us, and only sees patients during the day, so for most of our coming sessions I’ll be taking Nora out of school, and hopefully not Nadia too based on driving and school pick-up times. I know school is very important, but I think this play-therapy could help Nora a lot, so it’s important too in my mind.

I had an appointment with Nadia’s doctor in Minneapolis last week, over tele-medicine, of course. We are going to focus back on the basics, mainly healthy eating, so gluten-free for sure, and hopefully dairy-free in the future. We did cut out some supplements to maybe add back in when Nadia’s gut is healed. And we switched to some combined supplements so I don’t have to give so many different items each morning and night. We are doing okay gluten-free. I don’t purposely give her anything with gluten, but sometimes I mess up. I have no idea how to eat out, so everything so far I’ve made at home lately. Which is so hard coming from a family who ate out maybe half the nights before COVID shut down the world. Of course I haven’t seen any improvement in Nadia yet, I realize it’s too soon. But her anger issues are just AWFUL! So awful that I emailed the child psychiatrist Nadia sees at the University of Iowa and made an appointment for August 18th to talk. I don’t love her on medicine, so my fear is they will want to add in another… Ugh. They seem to love medication. She is so young for medicine in my mind. I worry how it will affect her growing brain long-term. Honestly, that is my biggest worry right now.

Googling

The more I Google, the worse off I am. Seriously. Ever since Nora’s teacher mentioned seeing signs of ADHD in Nora I’ve been reading. Both online and a few books. And now I’m convinced both my girls have it. Which I can’t handle. No more issues! I can’t take it! I’m gonna lose my mind!

Speaking of losing my mind. Ya know how Nadia is on Prozac, at only five years-old. Well, she’ll be six in a month, but still. I’m certainly not against medication in general, but she seems soooo young. So I was attempting to wean her off it. She was on 8mg daily, and I had weaned her down to 3.6mg, but last week I saw OCD symptoms returning, mainly lining up toys and lots of sensory issues with her socks and shoes feeling weird. So I increased her dose up to 5mg. How soon I’ll know if that will decrease the symptoms though, I’m not sure. It breaks my heart to see her so upset with her socks. I know she doesn’t understand why they feel funny to her, and then she gets upset, and then doesn’t understand why she is so upset. It’s a nasty cycle.

Last Thursday we had a playdate with a girl in Nora’s class. I’m friends with the mom, so Nadia and Nora both went and I chatted with the mom. Their house was built in maybe the 1970s, needed a few updates and fixes, and this mom has mentioned several times to me that they’ve had water damage in the past. Well, I shit you not, about 45 minutes after we got there, Nadia had an epic meltdown, like how she was two years ago at her very worst. She was kicking, screaming, out of control, I could hardly pick her up to even remove her from the situation. We immediately went home, I gave her Motrin and she seemed to calm down. But her pupils have been large since, a sign of brain inflammation. Looking back, her reaction has to be from the house, I assume they have hidden mold somewhere. And I feel awful I took her there, that the environment set back her progress. So at one today I have a tele-health appointment with her Minneapolis provider to discuss next steps. I’m really just discouraged. We’ve been fights PANS now for two full years. I want to see progress, sustained progress. Below are the supplements she takes daily, if you have any interest in knowing. If you are treating your own PANS child, please don’t assume these supplements will work for your child. Each is unique and this is not to be considered medical advice. It’s all too much. Plus trying to cut out gluten, and dairy, and sugar. Ugh. I know this is very much a long process. Maybe the immunotherapy we do monthly will start to kick in. Something has to work soon!

Nadia – Medications as of July 24, 2022Download

When life gets you down, you know what you gotta do? Just keep swimming.

Dory

Haircuts, Tutoring & Gluten-Free

Finally got the girls’ hair cut. Tangles were seriously getting the best of us on a daily basis. One night after baths I considered just cutting off the tangles myself… They cut around five inches each. So much easier to handle!!

Nora and her tutor are slowly progressing. The original plan was to start on the Barton Reading program, but Nora didn’t pass the third section of their screening. So instead we need to complete the Foundation in Sounds program first. I swear they were on lesson one, which teaches the sounds for m and n, forever. But today she finally got to move onto lesson two, which I believe is the sounds for v and f. Slowly but surely I guess. The more review the better, but of course I’m anxious to see progress. I actually own both of these programs, but getting Nora to sit down with me and learn feels darn near impossible. But with this tutor she is excited to meet. So that’s a blessing.

This particular tutor has been a teacher for over thirty years, so quite a bit of experience. And while she has no medical background, and thus can not diagnosis any conditions, she mentioned some things to me last week… She sees a lot of ADHD symptoms in Nora. This was actually a little shocking to me, as school has never mentioned such. So of course I started researching… I highlighted the ones that apply to Nora from my perspective. I have no idea if these are enough symptoms to qualify for such a diagnosis, or who even handles this sort of thing. We have that learning disabilities evaluation in November, but that seems so long from now. And even if she does have ADHD, then what? Medication with tons of side effects? That doesn’t sound very fun. My further research pointed me right back to square one… remove gluten from the child’s diet. And dairy, and soy, and sugar. So everything. Okay, sorry, I’m being snippy. But Nora is so picky already. I was doing kind of good with cutting gluten, but lately I’ve gotten more lax, ya know, because it’s really hard, and takes time to cook everything at home, from scratch. But I guess I need to be better at this.

This morning I was feeling a little ambitious and made these gluten-free blueberry muffins. I honestly thought they were quite tasty. Nadia tried them, said they were gross. And Nora refused to try them. And this is why gluten-free feels so hard. So much time and food is wasted. And then I panic and need to feed them and go back to something that is horrible for them. Dinner tonight is supposed to be this chicken and rice casserole I found online. Although I’ll be using dairy, so butter and regular cheese. Which I probably shouldn’t be, but… Anyway, I have a strange feeling they won’t eat it, won’t want it all mixed together. I’ll try to think positive. Am I making meals too complicated? I mean, there are so many meals to make. They can’t have plain chicken, or salmon for every single meal. And they don’t do veggies all that well. Ugh, motherhood.

School Supply Shopping

Is school supply shopping supposed to be an awesome tradition kids remember when they’re older? I picture the girls and I going to Target, getting Starbucks, and having a grand ol’ time. Except that the year I actually took them with me, it was a disaster, them begging for toys which were so nicely arranged right across from the school supply section. So last year I think I just went and bought everything they needed on my own. I mean, it’s not like you get much of a choice… And I was planning to do the same today. Bad mom? Or organized and efficient mom?

The nanny, if you can really call her that, is here today, so I have a few hours to myself. I should be doing laundry, or dishes, or organizing the house, or cleaning it for God’s sake, but I really just want to get away with this rare opportunity for alone time. Or sit and read my current book selection, The Woman in the Library. Which so far I can’t tell is really good, or horrible. My Kindle says I’m 39% complete. But sitting around reading makes me feel lazy. So instead I will probably go wander Target and get school supplies and at least feel like I’ve accomplished something today.