Do Better

As we were leaving Sebastian’s nutrition clinic the doctor said ‘You are doing a good job. But you can do better.’ Um, thanks?

I bit my lip to hold back the tears. I felt defeated. Again. It had been a tough week and rough couple of days especially. Of course he had no idea what we are going though right now. Not many people do.

Never mind that he arrived at the appointment at the end, after I’d argued with the nutritionist about Cisepride, a drug that was taken off the market in several countries because it can kill you. And to use it in Canada you have to get an EEG and special permission. Probably sign a waiver too. Never mind he was just poking his head in and came to make sure that he could tick all the boxes; ‘Has Sebastian been to the eye doctor, has he been to the dentist? Is so and so still his neurologist?’ Then looking at his growth chart. Never mind that Sebastian grew 5cm and is bursting out of his wheelchair again. His weight increased but not enough. It is never enough. And apparently it is my fault.

Four weeks ago Sebastian was in the ER getting diagnosed with strep throat. He couldn’t eat for a week. I have him a fully organic blended diet, made by me, via gtube. Meals approved and calories checked by another nutritionist. I increased his feeds since his throat hurt too badly to eat. The antibiotics were extremely painful for his stomach and he couldn’t sleep for almost the full week either until we switched them so even the food by tube was intolerable at times.

I feel incredibly proud and happy that for four weeks Sebastian has had a fully blended diet. He’s also eating orally again. And he’s living without constipation naturally. He goes through bottles of flax oil, avocado oil, and coconut oil quicker than I replace one bottle of olive oil for the whole family. His blends include coconut milk from a can and avocado. Plus countless veggies and various proteins. There are carbs in there too like quinoa, cous cous, and rice. I was actually looking forward to his weight check because I thought it would be higher even despite his illness. And it was. But not enough.

I can do better.

I’m going to wave my magic wand and his reflux will be gone. That’s it. Because I can do better. I’m going to stuff him like a turkey until he’s bursting. Because I can do better. I’m going to hook him up to a tube to feed him all night. Forget sleep. Never mind that his reflux and gassy tummy will keep him up all night. Seizures smeezures. Because I can do better.

They have been following Sebastian since we moved here. 6.5 years plus. First they offered Duocal. We used it despite the reflux it caused. Then they pushed for a g-tube and when we finally got it they pushed Neocate formula even though I asked for help with a blended diet. They offered Pediasure and other enhanced formulas that Sebastian can’t tolerate because he can’t have dairy and soy. They offered Miralax for constipation. They increase his Prevacid and talked about adding another medicine to help with motility. One makes him lethargic and the other one could kill him. They just push this and that and tell me more more more. Add more oil. Push him til he pukes. Because you can do better.

Why can’t THEY do better? Why can’t they find out what is best for my son without just pumping him full of corn syrup solids and medications? Why can’t they fix his reflux? Why didn’t they fix his constipation?

Guess who did?

Me.

For four weeks Sebastian has had a fully blended diet by tube. He has had no reflux from food intake and no constipation.

I do my best. Every day. And every night. When I’m blending food and separating it into glass jars to freeze. When I’m waking up early to get his pump ready and prepare his food for the day.

When I’m lying awake thinking about the list of things I will do tomorrow to make my son’s life better. Ticking all the boxes in my own mind.

I wake up and do it all again. Every day.

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12 thoughts on “Do Better

  1. I’m so sorry that you had to deal with a hastily dropped comment that was so lacking in understanding and kindness. Please know that it is very clear to all of us who read your posts that you are doing your very best for your sweet Seb, bringing all your resources of love and intelligence and creativity and every ounce of energy that you have to caring for his physical needs. Not only that, it is remarkable all that you bring to make life in your family such an adventurous ride. I hope you can start fresh tomorrow. Courage, wonderful Mama!

  2. As a mum of a child with CP who also uses diet to manage constipation, I can totally sympathise… the medical profession has its place but honestly, you know your child best. You are doing the best for him and I found myself nodding at so many of your comments… you are awesome, and he is thriving because of you. Keep up the fabulous work!

  3. First off I want to say Kara you are doing AMAZING! You can see it in the pictures, you can see it in your writing, you can see it in person!
    I think unfortunately many times that doctors do not want to accept that they don’t know how to help you. They don’t want to accept that they are wrong. For some doctors the mindset is I have more education, I am the medical expert therefore what I know is the law. They forget that parents are the expert on their children and that adults with disabilities (I am saying disabilities in particular because I also find that doctors try to take advantage because we are not as able, not all but some) are the experts on themselves.
    I am not typing that to sympathize with the doctor in fact I am so completely on your side, it is not even funny. What the doctor said was so unprofessional. it is unfortunate there are doctors and other medical professionals out there like that.

    Keep doing what you are doing because you are raising two absolutely amazing children.
    Here if you ever want to talk

  4. Praising God for His goodness, mercy and Grace as He guides you through this season of your life. Thanking Jesus for watching over Sebastian and giving him you as a mama. You’re a beautiful young women with many gifts, your greatest being the strength and tenancity He created in and through you…..For such a time as this. I love you Angel.

  5. Annie is now 13. On same boat. I have learned to hear with one ear … And then let my brain decide what is best for my kid. Diagnosed with failure to thrive at 4 years old … She is doing just fine now on blended diet.
    Breathe momma! You are a rock!

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