One of the precious moments with you.
It’s one of those summer days in Toronto; warm, damp and rainy.
Lying on bed with you is the best way to spend such a day.
One of the precious moments with you.
I guess all you needed was your own bed and room to calm you down. And probably also the fact that you don’t have an NG tube any more.
On Tuesday, June 7th,2011 you got your G tube insertion.
The operation went fine and you tolerated feeds after 12 hours very well so you were able to go home tonight.
However, what made things challenging was the dissapointing fact that the “Ketogenic Diet” still isn’t well recognised at a big hospital as the SickKids Hospital.
Your father and me had to question every act the specialists wanted to do because simply none of them showed their full understanding of how critical your ketogenic diet is for controling seizures.
It felt like we were dictators who wanted to suppress any saying or act!!
But all we were doing was preventing you from the harm of giving you ignorantly any carbohydrates.
We got things under control and nothing was given to you without first checking with me or your father.
I have to say you seem so delighted that the NG tube is finally out 🙂
Tomorrow is going to be our first day alone with the G tube. I hope things will stay fine and no complications.
Sweet dreams love.
After your addmission to SickKids hospital on Monday and getting an NG tube we were discharged wednesday late afternoon.
Thursday morning you woke up with your shirt wet and soaked up with green and yellow colors. Your NG tube was leaking non stop.
I checked the placement of the tube then made some phone calls to get an advice of what’s the best thing to do. The GI clinic nurse at SickKids said it’s nothing to worry about and to just tape the tube.
My instinct told me something is wrong, so I prepared meals for you for a full day and drove to SickKids. Good thing your baby sitter was with us to help.
At the hospital in the emergency department we had to wait 6 hours until you were seen by a doctor. An X-ray was done. It showed that the NG tube was in your stomach too deep. It made total sense for you to cry in pain when I gave you your medications through the tube. But somehow it wasn’t a concern at all for pediatricians when you were admitted at the hospital when I told them that you are crying!!
The NG tube was pulled out two inches. I insisted that they do another X-ray to put my mind at rest. The second X-ray showed the NG tube was still too deep. They pulled it out another two inches. After that I gave you some water through the tube and you were fine.
Finally we left the hospital at 12 am.
So sorry sweetie you had to go through all that only because a specialist didn’t want to pay much attention to a mother’s worries.
I’m writing to you while you’re sleeping on my shoulder in the emergency department at SickKids hospital, room 22.
You’ve been admitted to the hospital because you’re dehydrated due to not drinking enough fluids. And since you’re on the ketogenic diet and one of your meds have the side effect of kidney stones, enough fluids intake is critical for you.
So far they are helping you out by giving you fluids through the IV. They’ve tested you for kidney stones, you’re fine 🙂
A new plan will be discussed tomorrow morning.
Hope you and I will have a good sleep tonight.
Sweetie Nemer, March 26 is the day your grandfather left us. Remember baby that loosing him is loosing so much.He was blessed to see you before he passed away, and you were honored to be held between his arms. He was a wonderful man.
Dad and mom miss him a lot.
This video was a tribute mama made in the memory of him.
Nemer Sweetie you got me worried today. You had a good star of the day but then you woke up from your afternoon nap crying and it seemed to me that you were in a lot of pain.
What bothered me the most is that I couldn’t tell what was wrong with you! And I guess THAT what got me worried for the rest of my day.
I still need to guess and think hard and search between clues. Sometimes I would stare at you like an unprepared student starring at his exam paper not knowing what is the right answer.
It’s hard for one to not be able to express, as much as it’s hard on someone to not know how to deliver for a beloved one.
All I could deliver today was to hold you close and walk around hoping that my body’s warmth will ease your pain somehow.
Sleep tight sweetie. Hope you’ll have a better day tomorrow.
You have a new buddy now. His name is tag junior. He likes to read books with you with many different interesting voices and sounds. You love him. Honestly I do too 🙂
Reading time is so much fun for you with your new buddy. He greats you with your own name each time you turn him on, wherever you place him on a book he makes fun sounds,he sings, he imitates animal sounds, he read alphabets and teaches you about colors and shapes and so many other fun and educational things. And when you want to say goodbye for him he wishes you a wonderful day 🙂
It’s such a cool tool to enhance reading time.
Hi baby Nammor,
I thought it’s going to be cute to remember that today is the first day for your eye to get swollen. You woke up this morning with the upper led of your left eye red and swollen a bit. We call it in our mother language “fasfoosa”. You look cute with one eye red and half open ;p
Although I can imagine how much it’s bothering you especially while watching your favorite cartoons.
Hope it gets better soon sweetie.
Brings warmth into my soul.
Sends my heart into rapture.