The MD & Me

~ my not so glamorous but oh so blessed life ~
The MD & Me
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  • Author Archives: Stefanie

    • Awesome First Day!

      Posted at 8:40 am by Stefanie, on January 7, 2021

      You guys, I can’t even tell you how thrilled and proud of Nadia I am regarding her first day back to school, which was Tuesday afternoon!!

      I told Nadia ahead of time that she was going back to school, although I think she thought I was going into school with her, and maybe she thought I was staying, I’m not sure. She asked if I could go in with her, and I told her I’d see what the teachers said, as due to COVID this year, we just drop off at the door and parents don’t go inside. So… she put on pants on her own and seemed in a good mood, I wouldn’t say excited to go, but not dreading it either.

      When we arrived at her preschool I helped her out of the car as usual, got her backpack and bag of snow gear to play outside, and up to the door we went. She would not walk in alone, she tugged at my hand and asked me to come in with her, which the teacher allowed, thank God! We put her coat and bags away, I went with her to wash her hands, and then the teachers came over and asked her if she was ready to play. She started crying that she didn’t want me to leave. I gave her a big hug as the teacher picked Nadia up and peeled her away from me. I walked out, wanting to cry myself, and drove straight to Starbucks. I needed a treat.

      Not five minutes after I’d left the teachers were already sending me pictures of Nadia playing, smiling with friends, even a video of Nadia participating in the clapping and singing during circle time. I was honestly floored. They said she cheered up literally a minute after I left. I spent the rest of my first free afternoon in a very long time at HomeGoods looking for decorations for the house now that the place is bare since Christmas decor was removed.

      And when I picked up Nadia, big smiles! This afternoon will be the next time she goes back, I pray we have a similar outcome.

      Posted in Motherhood | 3 Comments | Tagged PANS, preschool
    • Pediatric Neurology Appointment

      Posted at 10:00 am by Stefanie, on January 5, 2021

      I apologize for not being more clear about Nadia’s back to school start date. Bless your souls who inquired about how her first day back went yesterday. I do appreciate you all checking in. Nadia will be returning for the first time this afternoon, in a few hours actually. And I’m terrified. What if she has a panic attack? What if she refuses pants since she knows we aren’t going somewhere fun, like Target, to look at toys? I think I have PTSD over her epic meltdowns, as I’m seriously a mess over her going back. I’m as scared for her as I am for myself. I don’t want the stress of preschool to undo all the great progress we have made over the past two months… So yes, it’s today.

      Yesterday Eric and I took Nadia to see a pediatric neurologist, a referral from our PANS specialist. We were there over two hours, so much medical talk, good thing Eric was there! I’m not sure I can say exactly how a neurologist treats PANS, my understanding is that it’s more to rule out any other brain abnormalities. There isn’t really one, or any definitive tests to prove a patient has PANS, therefore we need to rule out every other possible condition that could cause similar symptoms.

      If you remember back to Nadia’s premature birth, it’s customary to do an ultrasound of the brain on the seventh day of life to look for brain bleeds. They found one in Nadia’s brain and thus performed an MRI that same day, which ended up showing a portion of her brain hadn’t received oxygen at some point. They couldn’t pinpoint when, they assumed a week before or right after her birth, if I remember correctly. A pediatric neurologist did follow Nadia for the first two years of her life, but as her development was on track compared to other preemies her age, they released Nadia from their care, believing the brain had healed itself. Baby brains, especially preemies, as they are at an even earlier stage of development, are extremely ‘pliable’ so to speak. Damage is often able to heal itself by forming new and different pathways. Or so the doctors told us!

      So fast forward to now… Given Nadia’s neurologic history, they want to do another MRI with contrast to see how her brain looks now… They want to make sure that the symptoms we currently believe to be PANS aren’t better explained by some other condition. Honestly though, I’m not sure what we expect to see on this MRI. Inflammation in the brain, the biggest sign of PANS, doesn’t necessarily show up on MRIs, but again, we aren’t trying to rule PANS in, rather rule out anything else.

      On the drive home we ran through McDonalds. Nadia was so worn out she fell asleep mid-fry!

      I did ask the teachers about the chair. Apparently there is such a chair, that is set a bit away from the area used for circle time. It’s only for those children who are being EXTREMELY disruptive I’m told. Nadia has never needed to sit in this chair… Perhaps though she is afraid of having to? I don’t know… She is so easily embarrassed if corrected in front of others… I guess we’ll just see how she does today. Pray I can actually get her there!

      Posted in PANS | 1 Comment | Tagged anoxic brain injury, brain bleed, MRI, PANS, pediatric neurologist
    • The chair…

      Posted at 9:03 pm by Stefanie, on January 3, 2021

      As I was putting Nadia to bed tonight I was reminding her how she’s returning to school now that Christmas is over. We’ve been trying to keep reminding her so it’s not a shock. Anyway, she told me if you cry at school you have to sit in the chair. She said the almost all black chair. By the desks. Is that weird? I mean, she is four… I asked her if she has to sit in the chair and she said no. But then why is it so vivid in her mind? Especially since she hasn’t been to school in almost two months? I guess I assumed it was punishment, as if crying at school is wrong. Is that how you would have taken it? Could there be another explanation? I’d like to ask about this chair, but the last time I asked about something, which was why Nadia kept getting bitten at school, we were kicked out…

      Posted in Motherhood | 4 Comments
    • Play Therapy

      Posted at 8:41 am by Stefanie, on December 30, 2020

      I received my second rejection from play therapists last night. Apparently the good ones, or only ones, in this area, are just too busy to take on new patients. I have one more name to contact… I’m still considering dropping the occupational therapy, it doesn’t feel helpful. Most of the sessions are Nadia playing with toys, for example, a Mr. Potato Head. I mean, maybe that would help some children, but I’m not seeing the benefit for Nadia. I will admit Nadia is pretty far behind in what her classmates are learning in preschool. This break for her has definitely determined when she will enter kindergarten, which is certainly not in August as we had originally considered.

      Yesterday we had a follow-up telehealth appointment with Nadia’s PANS specialist. Mostly to review her GI Map results. They are mailing me a copy, so I haven’t actually seen details, but her doctor said nothing all that significant showed up. Since Nadia is doing so well currently, the plan is to continue on her current medications until at least through the winter, then we will try to take her off the antibiotic and see how she does. We are also adding in CBD oil in an attempt to lower her anxiety. Nadia is currently taking Zoloft, but we don’t want her on that long-term, so trying this to see how she responds.

      Speaking of CBD oil, does anyone take it themselves? In reading about it, it seems like a miracle drug. Is it really as great as they say? It’s not cheap… so hesitant to order any for myself.

      I feel like Nadia is currently taking so much, my days are full of trying to get all the medications into her, as some I have to hide in food or drink. I’m constantly following her around with a cup of apple juice asking her if she’s thirsty! I wonder what the CBD oil tastes like, and how I’ll get her to take that one. Some things she takes, like her probiotic, as capsules I open and mix into applesauce. Thank goodness she LOVES applesauce.

      Posted in PANS | 3 Comments | Tagged CBD oil, GI Map, PANS, play therapy
    • And… It’s Over

      Posted at 12:02 pm by Stefanie, on December 29, 2020

      And just like that, Christmas is over. How, I have no idea. I swear I was just sitting at my computer frantically searching Amazon for the perfect gifts. I guess I was… Below are some very random pictures I took over the past week. I’m realizing more and more I need to plan my photos a bit better! We did end up having my side of the family over, despite COVID, and because Eric was on-call and couldn’t leave the area.

      Nadia is doing remarkably better. Although hard to tell what helped, as she is on several prescription medications and quite a few over-the-counter supplements. I’d list them all, but it would take me forever… Nadia still has some angry outbursts here and there, but not like before. Way fewer meltdowns, although she is still quite physical sometimes, hitting, slapping, scratching, kicking, usually Nora. Hand washing is much less frequent now, and she doesn’t have much of an issue going to the bathroom, and has only said she felt ‘wet’ once in the past week. She even put on pants a few times all on her own. Of course, she knew we were doing something fun those days… Putting on underwear and pants for school might be very different. The girls are off this week and then our plan is for Nadia to start back next week. I’m nervous, for her. Her anxiety around school is so great. I did just email a play therapist, hopefully she is taking new patients.

      I’m sitting here staring at my new, still blank, planner, wondering where to even start this year.

      • Continuing Nadia’s treatments and getting her closer to 100% better is definitely a priority. I’m not sure if we still know what exactly caused all the inflammation in her brain… we are still awaiting a few more test results.
      • I’ve been working on a business venture. More to come on this as I need to find time to actually proceed with it, hopefully once the girls, both of them, are back in school. Could be really exciting though! Well, if it works out.
      • We need new furniture. We still haven’t ordered anything from the interior designer who was here months ago… I really don’t know how to decide. I thought having her come would make it a lot easier, but so far, that hasn’t been the case. I feel like most things she suggested are more appropriate for my mom’s house than mine.

      The girls need lunch… always something!

      Posted in Holidays, Motherhood | 2 Comments | Tagged Christmas, goals, interior design, new year
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    • About the Author

      Stefanie

      Stefanie

      Subscribe to follow my infertility, pregnancy, NICU, and PANS motherhood journey. Outside blogging I enjoy reading, coffee, and long chats with good friends. I live in Iowa with my husband and daughters, Nora (5) and Nadia (4).

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    • Popular Posts

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