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.

OT Feels Pointless

Occupational therapy feels so pointless. This morning the OT rolled Nadia in a large tube back and forth across the room for awhile. Apparently it’s supposed to help with her sensory issues. And then they played a memory game. I feel like these are things we do at home… But of course I don’t really want to quit therapy as I don’t want to feel like I’m not doing everything possible to help Nadia. I think Nadia could benefit more from physical therapy as she is still tripping over one foot that turns in. All her doctors keep telling me that she will grow out of this and her foot will straighten, but when??

I collected Nora’s pee this morning for her organic acid and mold/mycotoxins test. I think it takes a few weeks for results, I’m seriously curious…

Please pray that Nadia bounces back after stopping the Singular…

Vaccinated!

Well, I’m sort of vaccinated. I received the first of my two Pfizer COVID shots last week. A sore arm for a few days, and maybe a little tired the second day, but really no big deal.

It’s another Monday, and Nadia is still home with me. We are still struggling with her not wanting to wear pants or underwear. I had her try a pair of underwear on this morning… Nope she took them off, said it makes her feel ‘wet’ with them on. We did have our first physical therapy appointment last week. The therapist put some sort of electrodes on her upper legs, hips, and bottom. She said it appears that Nadia is tensing almost all the time, meaning when she was just sitting on the exam table, appearing relaxed, she was tense as if she was pushing to pee or poop. I have no idea how that is possible… We were given a list of a few exercises to do several times a day and told to try to make her go to the bathroom every few hours. Nadia lately hates going to the bathroom, so that’s going as well as you can expect! We have another PT appointment this Friday.

I have another follow-up with our naturopath tonight at 11:15pm my time, as she is in Australia. We’ve been slowly increasing some doses, so now we are up to one Candex tablet three times a week to kill yeast. And Nadia is tolerating the first of three bottles of herbs the provider sent us which we can do twice a week as prescribed. Yesterday I gave Nadia a small dose of the second bottle of herbs, and I didn’t notice any reaction, so maybe we can increase that to the maintenance level soon as well. The herbs are for a variety of Nadia’s problems, one being to remove mold from her body. I will say that Nadia seems a lot better lately (sleeping awesome too) except for this lingering wet feeling. It’s odd to me that this still remains, as in January we were able to get her over that… but now it’s back. So frustrating.

Tonight I also plan to chat with the naturopath about Nora. I’m not sure if Nora technically has any issues we can work on, but I want to ask. Nora is so so so picky, only has a few foods she likes, and none of them are healthy. Often she just looks sick to me with very dark circles under eyes. It’s tough to get Nora into school, like I have to almost push her in, the teachers sometimes escorting her in the building. I mean she goes, unlike Nadia, but it’s not easy to get her there. She also cries/whines a lot, somedays on and off most of the day. She doesn’t sleep well, clings to me often like Nadia… I don’t know. Just makes me wonder. I am sending in a urine sample of Nora’s for the organic acid and mold mycotoxins tests. Just starting with those two to see if they show anything before we investigate any further. I figure it can’t hurt to see what is all going on in Nora’s body too as I assume both the girls have been exposed to similar things over the years.

Ah, somehow it’s afternoon already and I still haven’t showered!

Laundry and Catch Up

I’m playing catch up this week, lots of laundry, emptied out my voicemail, returned a ton of calls, rescheduled some doctors appointments for the girls, you get the idea.

Nadia had her 18 month (15 ½ month adjusted) check-up Wednesday. She is now only three pounds behind Nora!

At Nadia’s appointment we talked a bit about her development, revisiting the idea of speech and physical therapy. Nadia is obviously not at the level of an 18 month-old, but we don’t expect her to be at this point. Our doctor was a little concerned though, so she asked we work with her at home and re-evaluate in a few months. Problem is, I have no idea what to work on! The doctor gave us a few suggestions, but beyond that, I’m a bit at a loss… Our pediatrician said Nadia should have 15 words, with meaning at this age. Hum… she definitely has way more than 15 words, as she will repeat most words I say, but I’m not sure 15 of them have meaning to her. Our doctor said she should be walking up stairs, with help, at this point, throwing a ball with a forward hand motion, rather than just dropping it, and now I forget what else. Ugh. Sometimes I think maybe getting her back into speech and PT would be easier. I mean, I know it’s two appointments a week, but at least then I’d know what to focus on each week.

Also, Nadia still isn’t sleeping through the night consistently. It seems she wakes maybe every-other night, and whines/cries in her bed until I take her a bottle. She’ll suck down 7 oz and then go right back to sleep. Our doctor suggested trying just water instead of the toddler formula I’ve been giving her, but I assume because she is worried about the sugar from the formula sitting on her teeth all night. Honestly, maybe that should be my concern, but I’m just happy she is growing well, and I contribute that to her nighttime bottles. She does eat well during the day, but she is obviously hungry at night, or wouldn’t want the bottle, right? I know we need to ditch bottles soon though… Maybe one day I just throw them away and not look back!

I should go… I planned a playdate at my home tomorrow morning. Do I frantically clean the entire house? Or let them see how we really live? And Eric left this morning for another week on-call, so it’s just me and the girls for the next seven days. I guess I should do some kid-friendly meal planning!

Motivation

I’m finding it harder and harder to write these days. It’s not that I don’t want to, or need to. I have the thoughts in the head. I just seem to find myself filling my time with other activities… Maybe once we get back into a routine I’ll find more time. Below is what’s going on in our lives!

  • Thanksgiving was fun! Eric and I hosted at our new home. He smoked a turkey, I made some sides and my mother brought a bunch of food as well, and my sister too. It was a small gathering, just 6 adults and 4 kids, but it was nice, and fun. But in true form, the day went way too quickly. And I was so busy I didn’t take a single picture the entire day. Ugh. As you know how much I love pictures. On to Christmas I guess! I better start shopping!
  • Speaking of our new home… I’m still in the process of unpacking and decorating. It’s supposed to be fun, right? Why does it feel like work?? Our Christmas tree has been up almost a week, and yet still stands with only lights… Maybe today?
  • I went yesterday to get some ideas for window treatments. What are your thoughts on shutters? We have white trim, so probably something similar to this picture. Would you do the entire house in these? Bedrooms too?fullsizeoutput_17b9
  • Nadia had her 15 month (12 month adjusted) checkup this past Monday. I’m totally mom of the year, she has an ear infection and I had no idea. She’s been teething and cranky lately, but I guess I just figured it was her teeth and nothing more. I did ask her pediatrician about continuing physical and speech therapy. Her thoughts were… lets hold off for now. Nadia is babbling more, and says a few words. Also, she is close to walking, as she currently walks around furniture quite a bit. Her recommendation was to see how well she walks once she does. Our PT in Cedar Falls thought she felt some tightness in one leg, but our pediatrician wasn’t able to find that. So for now, I guess we’ll see. I trust our pediatrician, as she has lots of preemie experience but I also recognize she is not specifically trained in physical or speech therapy.RX99vTMmVzPUA1jdGrQ
  • At Nadia’s checkup we also discussed the cyst on her foot again. It started on the bottom of her heel shortly after birth, but now as her foot is growing it seems to be positioned more on the back edge of her heel. Our ped and Eric both agree it was caused by so many heel sticks in the NICU for blood tests. My understanding is its dead skin cells stuck under the skin. It seems to be getting larger so needs to be removed, otherwise the fear is it will bother her when walking with shoes. Problem is… with children, they like to put them out, as it will involve cutting and stitches. Ugh. Eric wants to do it at home. I said no way!
  • Girls are healthier this week and back to ‘school’ as we call it. Nora seems pretty excited to go each day, although is still a little weary of me leaving. Nadia on the other hand, screams as soon as we walk into her room. Yesterday her teacher did send me a few cute pictures of her playing. So she must not cry the entire day! Neither of the girls are napping well there, in fact, Nora hasn’t napped at all this week. So bedtime is fun. And she isn’t doing as well sleeping through the night either lately like she used to. I hope we all adjust soon.
  • Eric has been gone since last Friday, and even with daycare help, parenting alone is hard. Really hard. A part of me hates all this responsibility. I have so much anxiety toward the girls eating, especially Nora. We are still relying on some bottles of Pediasure. Nadia is still taking a few bottles too of toddler formula, but she loves eating much more than Nora ever did!
  • I’m struggling with figuring out my purpose… This probably needs a post all its own… My original intention with daycare was to get the girls some socialization with other kids a few days a week. Everyone tells me though, that the girls will adjust much better if they have a consistent routine, meaning they should go everyday. Do you all agree? And if so, what the hell do I do all day? I can only decorate this house and consider working out so many hours a day. A job is the obvious answer. But I’m scared that would take me away from the girls too much, as I still normally get them from daycare late afternoon. And with Eric off every third week, I don’t want to be working during that time, as then I would never see him. I need a really flexible job. But no clue what that would be!

I’m sure I’m forgetting a million things I was going to mention, but I’ll leave you with a somewhat amusing story…

Yesterday morning I spent several hours remaking our bed. I had purchased a new memory foam mattress topper, a gel mattress pad, and new pillows. So I washed all the new stuff and put on a clean set of sheets as well. I was worn out, so I threw all the dirty stuff into a basket in our bedroom, vowing to do laundry soon. Yesterday afternoon the cleaners came. And put all the dirty stuff back on the bed and piled all the clean stuff in the laundry room. Only in my life, right??