Skip to main content

he keeps loving and trusting me

Trevor has felt nauseous since December. He's complained every.single.day of feeling "tired sick" or "throw up sick" or "tummy sick". His appetite has decreased dramatically and he's lost 10 lbs since his symptoms cropped up. We are working with his specialists (and adding new ones to the team) to try and get to the bottom of what's going on. In the meantime, this is the very reason why, at last year's physical, when he was at the top of the BMI scale, I was secretly thrilled on the inside. It was the first time in a long time that he physically looked healthy, regardless of what the charts say. I despise standardized anything, not excluding those silly healthy weight charts. I knew that anything could crop up medically to change his health and weight. It did. And here we are. 



He is unable to swallow pills, so I crush his pills and sprinkle them in food. We've used everything under the sun, but applesauce has worked best for as long as I can remember. 


However, with the nausea in play, he's been, quite literally, gagging his meds down. It's pathetic to see and my heart wrenches every time he's heaving at my own hand's offering. 


Here's the thing, though. Even though he complains. Even in spite of gagging and feeling generally crappy. He still swallows. He still swallows AND he keeps loving and trusting me! 


This is just one singular reason why he's the bravest person I know.


Today, I tried mixing in apple juice to see if maybe having less texture would be helpful.


It was a success.


Of course, it's only ONE day and one dose. But I hope it continues to help him. Any little thing I can do to improve his quality of life, which encompasses taking necessary medication daily, is a win. Today, it was an apple juice med cocktail for the win. We'll take it. 

Comments

Brenda said…
Bless his sweet ,trusting heart. I've had some of those meds he takes and wow! And as I was reading I was thinking how does she fight him everyday to take his meds? But then I got to the part where he does it, just takes it like a champ!! Cause he trusts you! And then I had to stop reading cause I couldn't see for the tears!! I love that kid!! And yes he is the bravest kid I know. And I don't really know him. Just his story and that makes him "A true rock star!!"
Danielle said…
He's truly such a champ.

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...