I've always been unsure about showing Jimmy's tummy because I've had people comment on it, and I feel he will be judged. I realise now that it is my own insecurities that have caused this, not his; he doesn't give a shit. As you can see, he has a slightly off-centre scar above his belly button. This is from a gastrostomy tube. When he was very young, he just stopped eating and a lot lost weight. I wasn't in the best health either with my mental health. Which I believe affected Jimmy. So I did something about it. I went to the doctor and asked for solutions. We needed to get food and nutrition into Jimmy fast and for him to have a gastrostomy tube. So it was decided to tube-feed Jimmy until his health and weight improved.
After the operation and the tube was in, I was shown the stuff I would be giving to jimmy and how I was to use it. This is the beginning of where I realised that before you agree to anything with Doctors, make sure you know and understand everything about what will happen and what needs to be done. I was handed a drink! A drink called ENSURE. I said, "wait, Jimmy can drink" I had said from the beginning that he could drink, but I was told that this was the best option and we needed to get this tube in as soon as possible. So thinking I was doing the right thing, I agreed. Not knowing that the food given to Jimmy would be a drink.
I asked why I would use the tube if he could drink. They explained to make sure he got all of it. I said, "Ok" I figured this was the best way to get his weight back on fast.
I initially used it only a couple of times because Jimmy could drink the formula, and he loved it. A few months down the track, we had been booked to return and have the tube taken out and a peg put in. I tried to say I didn't want the peg, but they kept pushing it. So we still went down to the Mater in Brisbane, So I could face them and explain my reason for not wanting the peg. They still wouldn't listen, But I stood my ground and said Jimmy would not be going into surgery if they didn't remove the tube. They tried to say, let's just put the peg in for now, then he can come back for another surgery if you don't use it. I was getting upset, even arguing why I would allow Jimmy another unnecessary surgery. "I am not using the tube now as he drinks and also is back to eating solid food. What makes them think I'm going to start peg-feeding him. Conversations went back n forth for ages, and it wasn't until a nurse had cried after a conversation with me they finally listened and agreed that they would take the tube out because Jimmy was drinking and eating. I told the nurse this is my son; I am home with him 24hrs a day. He is not just another number to tick off a list. I was very polite to her, and she understood where I was coming from.
I think back to how persistent I was that day and really believe that if I hadn't listened to my gut feeling and just listened to everything the doctor was saying and USE the tube and then peg-feed him. Jimmy would not be able to eat as well as he does today, and that would have been life for him.
With everything I have ever done with Jimmy, I've done some things outside of what was "told" and treated him as he is. Not some very sick boy, as they told me he was or didn't fit in the "normal" range, so we need him to be "normal." That's what I heard a lot from doctors back when he was young. It was always "we need him to be "NORMAL." WTF
Take us today; he is thriving and living his best life, enjoying food as much as the rest of us! Even eats more than me sometimes.
Disclaimer; Even though you may have a gut feeling, check with your doctor and decide whether something is right for you.
Here are some other instances as well -
I even took jimmy off epilepsy medication very slowly after he hadn't had a seizure in years because it would make him tired and unmotivated. Well, it worked; he never needed it again. But this was after visiting Perth to visit my family and getting a second opinion on his blindness. This doctor explained a few other things to me to get checked when I got back home, and sure enough, Jimmy needed to be on thyroxine for his thyroid, and that's when the seizures stopped. So hence me making the decision to take him off epilepsy meds.
When Jimmy was older, the hospital called me and said I had a very sick boy who needed to be hospitalised. I was confused because Jimmy hadn't been ill for a long time. He was a happy little dude. But I was talked into taking him to the hospital while they ran some tests. Now, I believe these tests helped him a lot as we found out he has diabetes insipidus, which I trusted because he pees a lot, and made sense. I also found out he had panhypopituitarism which I also trusted was true. Before I allowed the medications to be given to him, I read up on the diagnosis and asked many questions, confirming many things were happening. Even though Jimmy was happy, and as far as I could see, they wouldn't let us leave the hospital for days. They kept telling me he was a sick little boy. But he wasn't. He just needed some extra help. This is where it gets interesting. They tried to get me to put him on growth hormones and testosterone. I said no, which is why they wouldn't let us leave, always trying to convince me. Finally, I could go home and "think about it."
Let's start with the growth hormone. I saw what it did to other children; I had a friend at the time tell me what it did to her, and nothing I saw or heard made me believe that Jimmy needed it. The doctor tried to say… "see this chart, he's here, and he should be here," and "he needs to be taller", constantly referring back to him being "normal" My answer I'm not tall. Maybe he's just short like me?…. "He needs to reach higher to get into a cupboard" was one of the things that were also said to me! My reply was, "He is blind and will always need a carer, so they can reach for things he can't" anyways blah blah blah, many dumb conversations were had because, in this doctor's eyes, Jimmy didn't fit into "normal society" and he wanted to make him normal. By "normal" give him medications that they wouldn't know would work or not. That is also what they they said to me. I started to get really upset. He then went on to tell me how much it costs for growth hormone and that I would be subsidised. I still flat-out refused, so this doctor put a piece of paper in front of me and said look, you don't have to give it to him. Just sign the paperwork, so it's there if you change your mind. WHAT THE ACTUAL FUCK!! That was the day I released that some, not all, doctors don't care about you. They care about the kickbacks they get if you sign a piece of paper saying you'll take this drug… after that, I walked out and never saw that endocrinologist again.
Testosterone - I had found a great endocrinologist by this time, and he would explain why something would work and how it would help. It was the right thing, and he also said it was ok about the growth without agreeing with why I didn't want to give it to Jimmy; he just understood. So Jimmy was first on a tablet form of testosterone and now a gel. That gets applied with gloves because I don't want that stuff to get close to my skin.
As he got a lot older, he started having seizures again. I noticed when it was happening, took note of my surroundings and what was happening and realised it was because of toxins from not going to the toilet regularly. Yet again, as his mother, I listened to my gut and worked out the problem. He hasn't had a seizure in a couple of years because he now gets a suppository every couple of days to keep him regular.
Lastly, when it comes to Jimmy, I never give in to pressure if something doesn't add up or feel right. I've done some stupid things in my life regarding me, but I always have followed my instincts. This brings us to today. I still don't and will never let someone decide what is healthy for us and pressure us into something I soul heartily do not believe in. Take what you want from that, but I know with every decision I have made, it always turned out great.