Hospital Stay for Functional Neurological Disorder

(Watching Star Wars together).

 I love that I am writing a blog post like people might actually read it or something. Hah! My blog is actually dead in the broader world, but for some reason I feel like posting and I can always go back and read my own old posts and that is reason enough to write a blog post. 

Anyway, today Enoch (12) started an in patient stint at the Children's hospital an hour from our house. He will be doing physical, occupational, speech and cognitive behavioral therapy six days a week, and will be able to rest on Sundays (but still at the hospital). He will be here for 2-4 weeks, the length depending on how he is doing. He doesn't want to be here, but has (very, extremely) grudgingly agreed to come. Avram and I both feel very good about it. I really think it will be good. 

We spent the whole day with him here today, and Avram and he are now watching the long promised (by Avram to Enoch) Episode III of Star Wars before we leave him for the night. That is one of the things he is the most upset about, that we can only visit him from 5-8 pm six days a week and all day until 8 on Sundays, but no spending the night. I mean, I get it, I wouldn't want to be left alone in a hospital every night for weeks either as a kid.  But we know the returns will be so good - we are really hoping he will be able to start walking again, and be able to play with legos and write again and turn pages so he can read physical books again. So many things we want for him. It is hard to be the parent of a chronically ill child. 

For those catching up, Enoch has Functional Neurological Disorder that he developed after getting COVID in November 2023. It isn't curable, per se, but it can be managed well for life, which is what we are hoping and planning for. 

January 2025 Recap

 It is now April, which tells you how successful I have been at finishing this post. Oops. I actually finished the writing months ago, but never added in pictures. It was my hope to try and do a post for every month. At this point my only hope is just managing to get this post published in 2025.

2025 got off to a great start. We had our dear, long time college friends, the Aedos, over for a charcuterie board and board games. 

Of course I somehow only managed to get a picture of the charcuterie. This was actually a get together that had been rescheduled multiple times because of our sick kids, and sadly not everyone could come who had originally been planned on (one was already back in Minnesota, even), but we had a lot of fun finally seeing our friends and not being sick. The older I get, the more I value our friendships that have stretched back through decades. 

In fact, MLK Jr. Monday we got together again and had an Asian feast and roleplayed our long standing game, a western fantasy game where we play Mormon Marshalls in Deseret.  

Throughout January we worked on being more social in person. Avram and I went on a couple of dates with another couple friends of ours (also from college), the Reeds. For one of them we got Chinese takeout from our favorite Chinese restaurant that we have been patronizing since college. Oh, dear, as I write down our month I sound like we are just trying to stretch out of our college days, and perhaps we are. We also watched a movie together, the Ladykillers, which was great fun. It was a dark comedy that was somewhat reminiscent of Arsenic and Old Lace in some ways to me.

We got one snowstorm that produced sufficient snowfall to finally sled as a family. Sadly it was probably our one and only snowfall that lasted long enough to do so this winter. Going sledding as a family is a lot of work to round up the sleds and dig out the snow pants and boots I have collected over the years for our once or twice annual sledding event, but the kids love it and I think it is worth it in the end, although always a bit of work on the outlay. Nothing quite compares to siding down a hillside on a sled, though. I do love it. And this year we got to introduce Rowena and Artemis to the joys of sledding. They only cried when we packed up and left, and then they wailed all the way home - a sign of a successful trip with kids!

I also have been focusing on playing more board games (another post coming about that - no really, it started out as a part of this post and grew so large I had to cut it off into its own post). In January alone we played 14 different games a total of 24 times. Considering in previous years we have struggled to play much at all, I am extremely happy with this increase. I have been looking for a new/old hobby and also a way to spend structured family time together without leaving the house, and playing games has been great for that.

In other ways our January has been quite difficult. In November of 2023 my son Enoch, then 11, got Covid and directly developed Functional Neurological Disorder from it (as well as Hashimoto's) and it has been a real roller coaster ride of difficulties and struggles ever since then. This post isn't the place to go into long details (or else we would be here for many thousands of words), but long story short he ended up spending a week in the hospital over Christmas 2023, hasn't attended school long term since then, and since the end of October 2024 hasn't been able to walk or do fine motor skills things either (like write, play with Legos, etc), as well as being in a severe brain fog that affects his ability to think or reason. He also often moans continuously and is in a lot of pain, which is neurological and so very real, but does not respond to pain medication, so it is not treatable.

 It has been a lot - a lot of appointments (PT, OT, Cognitive behavioral therapy), a lot to physically take care of him, a lot emotionally for everyone in our family. A lot of kids who get FND do get much better, and we are hoping and praying for that for Enoch, but we just don't know. Over July and August of last year he got much of the way better, perhaps 70%, but has been in such a long flare-up now that has lasted for four months and we don't really know what the future holds. We just keep moving forward one day at a time, just doing the very next thing in front of us.  

Nevertheless, life keeps tricking along and it is a strange melange of socializing and family, our new home and family games and Enoch's FND which weaves its insidious self through it all. But our January also included:

Twins! Man I love our twins. It is so much work to have them, but they are so great to have. If one toddler is cute, two are cuteness overload. Rowena (on the left) has finally started taking steps (she also has a Physical Therapist and two (!) SpeechLanguage Pathologists who work with her on eating, but thankfully two of those three specialists come to our home and work with her here.) she isn't fully convinced to bring a full walker uet, but I love seeing her little zombie baby steps. Artemis (on the right) is also darling and cute and they are just so aware of each other.  

Here they are doing Lydia's hair, a favorite activity of theirs second only to having their own hair done.

Sunsets! I love seeing  the sunsets from our new home, and the kids know to call for me to come and see one of it is looking good. Artemis loves looking at the sunsets as well (Rowena is more into books than what is happening outside our windows). 

(This sunset is actually from the beginning of February. Don't tell the blogging authenticity police I fudged it. Compared to what most people flagrantly lie about online these days, this isn't too bad, right?)

The library! I love the library. Ours is old and beautiful and they have toys you can check out to play with there, which is a wonderful way to have toy variety for the kids. We also have been checking out games that you can take home from our library, and it is a great to try out games we have read about online. Lydia and I even made it to two story times for the twins during January.