What was the longest night you ever had as a parent?


Lots of people have been wanting an update so I thought I would do that.

The months after surgery were sort of a blur. We went back to the hospital several weeks after his surgery for an MRI. His skull is healing fine, plate is stable but I can feel the screws through his scalp, his head is asymmetrical now with a noticeable flat spot unless his hair covers it.

i believe it was June or July 2021 we went back for an EEG and while his readings weren’t 100% normal, no seizures were detected, so that was fantastic news. He’s had a few more EEGs since then and so far we are clear. He needs to stay on his epilepsy drugs for the foreseeable future, but now they compound them into chewables for him, so he’s a little happier, the liquid was nasty.

But Dom did have some side effects which were more disabling to him. He had to have occipital lobe resection so he’s lost more of his vision and now had cerebral visual impairment, he can see but it’s confusing to him and has large cuts in his peripheral vision. He’s getting some visual therapy and learning some skills to help him navigate his world.

He’s also dealing with some fairly severe sensory and behavioural struggles. We have to plan our day quite rigidly, otherwise he struggles. This may improve with time, but with the resection and lobectomy it just might be part of him, we are working on coping mechanisms for him but there are days when it’s just a stay at home day for his own comfort and safety.

He is walking and moving around fairly well, his left hand use isn’t the best and his left leg doesnt always clear the floor when he’s tired and that causes the occasional fall. We have noticed that his stamina is not equal to other children his age, and when he’s used up his energy he will just drop, refuse to move and can go meltdown quickly We borrowed an adaptive stroller for the summer to try out, but he hates that stroller, like screams his head off and tries to escape hates it. We are kinda stuck on this because I can’t carry him around anymore for long periods, but there’s not really good options right now. We don’t think he needs a wheelchair or a walker, but as he gets bigger it’s become a worry for me. I’m hoping his physiatrist will have some options in the fall.

Dom also is a terrible terrible sleeper, when he was in his crib we at least knew he was contained and safe and I could listen to him without disturbing him. But December 2021 he escaped his crib and I caught him running around the house at 3 am playing with light switches. Dom doesn’t really know when he’s doing something dangerous and it scared me. At this point no matter what we tried Dom would consistently wake up between 12–2am and would be awake for hours if not the whole day except for a brief nap during which I worked, so I went through a period of extreme sleep deprivation. Safety beds for kids are like eye watering expensive, and there was no coverage for it anywhere and truthfully we weren’t expecting him to outgrow his crib so quick after surgery. We finally found an option after several months and when I say I cried tears of joy when it worked I cannot accurately describe how relieved I was. I don’t know if it will work long term, but this gives us growing up time and hopefully he will learn to stay in his room.

He got accepted into a preschool with an aide in September 2021, and we struggled whether or not to send him, but he desperately needed the extra help and extra time in a classroom so he went. We had a fantastic aide and she really helped Dom get used to his classroom and some routines. But while in school we spent from November onwards sick with one thing or another. He needed steroids a few times and in June we had to call an ambulance because he was struggling to breath with severe croup. During this time we found out he was quite iron deficient so we started treating that, hopefully this help his immune system and we don’t spend another year sick.

Truthfully this last year has been hard, as he gets older and bigger it’s easier to see the delays/disabilities he has. When he gets into meltdown mode it takes all my attention and strength to keep him safe. Hes talking but his words don’t make sense about 50% of the time and a lot of things we have to guess, we figured out recently that if he says 8.7 it means bad and if he says 8.9 then it’s good. We are going back into a communication device class in the fall.


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