Another piece to the puzzle

Last week Mr. C was admitted to a children’s hospital for bowel impaction treatment. Any of you who know our family personally, or have read past posts, are aware this is not a new issue for our family. We have been struggling with regularity for years.  

We first started working on this issue with E. Due to sensory issues related to his autism, he had issues with constipation which lead to blockage and painful elimination. This lead to fear and withholding. With a lot of work and medication, we were able to clear these blockages and retrain his body and now he has very little issues in this department.  

Now we are facing this issue again with C. We know the drill and we have tried ‘cleanout protocols’ from various doctors, yet we are not having the same success. Unfortunately, he ended up admitted to a hospital with an NG tube feeding him medicine to make things move. This is the worst-case scenario for him so far, and as unfortunate as it is, at least he is making progress to being healthy again.  

Most of what we have learned this visit is not news. He is diagnosed with Encopresis and Functional Constipation. So, we were sent home with a follow-up visit scheduled 8 weeks out and told to medicate daily with a stool softener like Mirlax and a laxative.  

Once home, I was reviewing lab notes that were available through the doctor’s web portal and learned something new which may or may not have a huge impact on how we deal with this situation long term, but was still something interesting. The x-ray that we had done to locate and officially diagnose the “fecal impaction” also caught something else. C has Spina Bifida Occulta. 

Thankfully the mildest form of Spina Bifida and we really don’t know yet how this will evolve as C grows and we deal with his various issues but it really does help add another piece to his puzzle. This could be contributing to his elimination issues and may even be a factor in his ADHD diagnosis. I’m constantly fascinated by all the tiny things that add up to an issue. Time to study more and learn as much as I mother can and make more notes in the ever grown health binder I keep for these boys.  

Advertisements

Last Night I Cried 

I tried not to cry as I woke up to the sounds of boys screaming at each other. 

I tried not to cry as one of them came sobbing into the bedroom with hurt feelings. 

I tried not to cry while I had breakfast and listened to and watched my sweet E stim to calm his nerves.  

I tried not to cry as I discovered that our new puppy had suddenly gone lame and could not stand on his own.  

I tried not to cry as I headed to the hospital for an x-ray on Mr. C for another bowel impaction. 

I tried not to cry as I saw the image on the computer of a bowel so packed that I’m surprised he was able to walk around normally. 

I tried not to cry as his hospitalization was confirmed and we were admitted to our room. 

I tried not to cry every time he cried because he was scared and starving from the liquid diet restrictions. 

I tried not to cry as he was sedated before having an NG tube inserted into his nose.  

I tried not to laugh as he got goofy on the sedation and started talking nonsense and being silly. 

I tried not to cry when I had to assist in holding him down and restraining him as he screamed and cried, begging them to stop putting the tube in his nose.  

I tried not to cry when we went through that fight three more times before the tube was successfully in. 

I tried not to cry when I found out that we had to return our puppy to the shelter for long term care and potentially give him up if his health is just too bad. We’re already so attached to him. 

However, when the lights were down, and C was finally asleep, I laid down on my couch-bed in a sterile room and I cried.  

I needed to be strong, to handle what was thrown our way, and get my boy through the day that seemed unending and horrible for him but, I also needed a moment for me. I needed to release some emotion and stress. 

I’m sad that my adorable C has to go through this. 

I’m sad that this is the fourth time in the hospital for this. 

I’m worried about my dogs, both at home who have adapted to the new addition, and for the one we may not get to keep. 

I’m worried about my kids and my husband. 

I miss my own bed. 

This morning however, I feel refreshed. I’m me again. Calm, cool and collected. I will get through today and have a positive outlook. Just another reminder of the need for caregiver self-care. It’s so important to do something for yourself every day. Our lives are hard. Obstacles are thrown at us all the time. We need to have our “game face” on at all times. To be ready for anything. But, every once in a while, we need a break– we need “me” time. Even if it’s just a moment to let us feel, to cry, or to just sit and stare out the window. It allows us to carry on. 

So please mommies, daddies or other care-givers out there, remember to take care of yourselves too. 

Weighted Blankets and more

A lot of changes here on the site. I’ve rebranded as Chasing Calm – Adventures with Quirky Kids and have a new look to my blog. Please be patient as I work on these changes. You may even see a few reincarnations on the blog while I work to find a look that really feels like us.

The “About” page has also been updated. Nothing earthshatteringly new, but it was a wee bit out of date. The home page is now set and the blog posts are on their own page. Let me know how it feels. I debated changing all these things, and do feel a bit out of my league, but it also feels good to get a fresh look. Sort of like how it feels good to get a pedicure but you aren’t sure if you went with the right color.

Recently I opened shop on Etsy under the name ChasingCalm. At this point, I offer a variety of weighted blankets, lap pads and eye pillows. These products help to calm kids when their senses are overloaded, and are known to help them sleep better. Everything I offer can be customized to your needs and specification, and I hope to add more products soon.

0 to 60 

Are we really moving forward, or are we stuck in a loop? That’s a question that runs through my mind almost daily now. We’ve been in our new location for almost 4 months and things continue to feel more like home.

The issue causing me worry is, are we doing too much too fast? Do we really need to be going 60 miles per hour so soon, or would a slower pace be better?

Before our move, we had the boys taking speech, occupational and physical therapy. It was hard to have all three therapies fit in one day for both boys and it was hard to take three days out of every other week to make them happen that way. We had homework assignments, but they seemed simple enough and we were able to get that done.

We are still doing these three therapies but now doing them each week and not all in one day. The appointments are more spaced out and things should be simpler but, for some reason, they are not. The boys seem to have more therapy homework and seem to be having a harder time coping with the added load. In addition to these sessions, Mr. C also has started vision therapy, which also has homework.

We moved and hit the ground running. We got our doctors in place, and got really good therapists. So far, they have seen things we hadn’t yet, and we are learning more about our boys’ needs. Different ideas are being tried for their sessions.

For example, our speech therapist noticed that Mr. C probably has an issue with chewing and jaw movement, not just how he uses his tongue to speak. She noticed that both boys have trouble with sensing time so she has us working on estimating how long things take. She has us using games to help the connection between brain and body. Not exactly what you picture when you talk about speech therapy, yet it is all part of the bigger picture.

C needs his vision therapy because it plays a big part of his processing issues. Both boys need physical therapy to help strengthen the core muscles of their body and gain strength which they are behind average on. They need occupational therapy to help them learn how to cope with their sensory processing issues and writing skills. All these are all important.

It’s amazing, it’s wonderful. We have been so excited to have access to all the services that we need for our kids within an easy distance. However, I now wonder if we’ve taken too much on at once.

They need these therapies. We wouldn’t have gotten the referrals if they weren’t needed, but now we are being told that it’s too much for them. We are being told that most people don’t do three or four therapies at once.

It’s overwhelming. How do we know if we’ve made the right choice? We feel like the boys need each one of them, but how do you choose which one to pause until a later date? How do you tell your child that they need to wait to learn how to see better because they are overwhelmed and need fewer activities? Or do you tell them that they have to wait to learn how to cope with things that overwhelm them?

As a parent trying to give my kids the best leg up I can, I’m choosing not to tell them that. I choose to continue therapy as it is, knowing it may be a bit much right now. Doesn’t that teach them adult skills as well? As adults, do we get a choice to “pause” this obligation or “take a break” from that situation? No. They are young and resilient. They may have challenges, but they will adjust. Part of that is dependent on me as the primary caretaker. If my attitude promotes success they will succeed.

So, while it may be challenging, we’ll continue this 60 miles per hour pace we’re currently at.

I just hope that I can handle it.

%d bloggers like this: