Posted at 10:02 am by Stefanie, on September 23, 2023
Our surrogate asked for full compensation regardless of when she delivers, with transfer scheduled just a month out. Our lawyer said he’s never heard of this… Our chat with our agency felt seriously awful. The agency owner is a three time surrogate who admitted she herself once requested full compensation. So you can guess how the rest of that conversation went. She basically attempted to normalize such an ask. I felt she was unprofessional and unethical, bringing her personal life into our situation. I felt she was completely on the surrogates side, didn’t emphasize with this surprise to us at all, even insinuated maybe this was my fault since I’ve yet to make contact with our surrogate. I was waiting until the contract is signed… So many things about this process with this agency and match has felt wrong. But to lose sooo much again as we already walked away from another agency who was bought out mid match and requested more money. Why does it feel like there is so much protection for surrogates and none for IPs?? Our surrogate is saying that she is asking for full compensation because our embryo wasn’t genetically tested. But why even match with us then? She knew that all along, and to ask for something, in my opinion, outrageous, so close to transfer, well, just feels so wrong.
Summer is upon us. The girls finished school May 19th, which actually feels like forever from now… I can’t believe Nadia will be in 1st grade and Nora in 3rd in the fall!
A nanny is hired and so far, so good! The girls love her, she’s taken them to the library, some parks, we might have her venture to the pool, we’ll see.
The girls had their ballet recital the Saturday after school ended, which was amazing as well, they both did excellent. Nadia was really nervous though and has since claimed she doesn’t want to take dance next year. We’ll see. Maybe she will change her mind!
With summer, though, comes the lack of a schedule, and that is slowly killing me inside as I tend to thrive on consistency and order. The days feel lazy to me, too lazy, sometimes almost wasted. Oh, don’t get me wrong, I have a ‘to do’ list, but it doesn’t seem to be getting completed any too quickly. Which reminds of the load of laundry in the washer that is slowly molding as I type.
Health-wise the girls are doing okay, though Nadia has had a bit more anger than I think is normal. And did I write about her tics I noticed back in March? She was excessively clearing her throat, though only when eating. Back in March when they started I made an appointment with our lady in Minneapolis who we love, but the appointment was just last week, as you know, booked out. So we ran some labs this week, which mostly looked normal, well, normal for Nadia, and switched up a few supplements, so we’ll see if any of that makes much of a difference. The tics lasted maybe three weeks, so thankfully those have been gone for quite sometime. We suspect they were due to an exposure of something, maybe strep, but hard to tell as who knows what people have out and about in the community and at school that the girls are exposed to from time to time. The presence of the tic tell us that Nadia is not all healed, so we might be missing something. So we keep fighting. It’s not easy, for them, taking all the icky medicines and supplements, and me, preparing it every night, keeping everything organized, worrying about it all, worrying about them. Some days, I don’t know, almost feels like too much. But what other choice do I have?
Speaking of choices, I ordered a rife machine. I’m guessing most of you haven’t heard of it. I’ll post more once I have it, it’s supposed to arrive Friday. The gist of it is, every virus, bacteria, fungus, etc., everything basically, has a frequency at which is too much for it to handle, basically a frequency at which it dies. This machines can target those frequencies and kill certain things. I bought it for Lyme and co-infections for the girls. It will be interesting. Google if if you’re curious, but I’ll update you as well.
I’ll leave you with a few more pictures of the girls, the pool, park, and ice cream!
Posted at 9:54 am by Stefanie, on February 15, 2023
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.
Posted at 12:47 pm by Stefanie, on September 14, 2022
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 🙂
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.
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.
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.
Nadia is… okay I guess. She has her moments of tantrums, melt-downs, whatever you want to call them. Times where she wants to claw and kick at her older sister. But she is five, will be six in August. Don’t all five year-olds have their moments? So it’s really hard for me to say what is normal, what is normal for her, and what is lingering PANS issues.
Nadia is still on maybe 40 or so supplements daily, several of which are prescription immune supports. I hate the medicines, and so does she. It takes me maybe 30 minutes each morning and night to prepare it all, measure it all out, as she can’t swallow pills yet. And has no interest in learning. When will I ever be able to forget my daughters’ have health issues?
I’m terrified for Nadia to start Kindergarten next month. Like, seriously gives me anxiety. She says she is excited but also a little scared, which I assure her are both normal feelings. But I guess the stress of her actually going, well, I’m afraid that will set back her health from a physical standpoint. Like, will some of her more serious symptoms come back after school starts and her body is stressed? God help me if her OCD returns. In fact, I have her weened down to just half her usual dose of that medication, and so far, so good. I’m scared to lower it any further though, thinking maybe she will need the support when school starts. At least for a little bit of time.
I do trust this doctor in Minneapolis, but gosh, we’ve been treating PANS for over two years now, I want to see some huge gains, and I don’t want 40 supplements forever. Maybe that’s too much to ask for at this point. I mean, she is wearing underwear, that’s is huge. Hopefully the school uniform won’t be an issue…
I hired a personal tutor for Nora. It’s over Zoom, which isn’t perfect, but gosh, everything seems to be over Zoom since COVID. I’ve been doing a ton of my own research. And I’m convinced Nora is dyslexic. I’ve read tons of books about it. I’m pretty much convinced. Of course, our appointment at the University to test for learning disabilities isn’t until November. Which is almost another half a grade away. We noticed Nora had an issue with sight words in Kindergarten, and here we are, two years later.
Our tutor specializes in learning disabilities, specifically dyslexia. She uses the Barton Reading system, which I’m told is one of the best. Nora’s first session was this morning, and so far, so good. Nora actually seemed to enjoy the time online. They will meet one-on-one three times a week for 50 minutes in the summer, and then drop down to just two days a week during the school year.
Nora will still meet with the special education teacher at her school for 20 minutes everyday. Although the tutor said, if Nora is dyslexic, the way the school teaches reading/spelling may very well just confuse her. In fact, she said homeschooling would be really great. Um… nothing against homeschooling, but I just don’t think I’m cut out for it. But I do know the school does do some things that seem to be killing Nora’s self-esteem, like taking turns reading aloud in class, presenting in front of the class, writing on the board, etc. Would an actual diagnosis of dyslexia change any of that? We have an IEP for her special education needs, but the accommodations don’t mention anything about not calling on her in class…
My heart hurts for Nora. She is so shy, hates school, hates reading, and I assume it’s because she finds reading and spelling so difficult. Fun fact, apparently as many as 1 in 5 people are dyslexic. Um… that’s a lot of people! I really want to talk to Nora about dyslexia, but without an official diagnosis, I feel like I may be putting ideas into her head that aren’t true. But how else can I convince her she is a bright child who just might need to learn differently? I hate to see her struggle… I want her to love learning and reading as much as I do.
Subscribe to follow my infertility, pregnancy, NICU, PANS, and surrogacy motherhood journey. Outside blogging I enjoy reading, coffee, and long chats with good friends. I live in Iowa with my husband and daughters, Nora (8) and Nadia (7).