That one teacher. ..

I think everybody has had that one teacher. The teacher that seems to pull a class together and get the kids to LOVE going to school. Learning becomes fun and not a chore. This kind of teacher is a once in a lifetime for the kid.

I still remember my year. It was 6th grade. My teacher loved science, hockey, cows and flying planes. We had a flight simulator in the class, dissected pigs (ew) and had to do income taxes.  It was challenging, but fun. I was a goof off and whether he knew it or not, I loved that class. It was over 20 years ago (omg!) and Ill never forget it.

Ty had that this year. He was actually fortunate enough to have the same teacher (and classmates) last year too! His teacher pushed them, motivated them and encouraged them...for two years.  He is entering Jr high with something he didn't have two years ago. He has learned so much more than just academics. He has learned perseverance, confidence and pride.

His teacher held his class together. They joked and laughed, all while learning.  The kids formed a bond. She set high expectations and pushed them to do their best. She truly gave so much of herself to these kids and genuinely cared.  She visited Ty in the hospital (twice). She cried tears of pride when they presented their businesses.  She loved the kids and it showed. She is amazing. She didn't just teach. She dedicated her time and her hearts to these kids. She cared about their academics, their safety and their emotional well being. She helped me raise my son and prepare him for this scary grown up world.

End of the year gifts are so tough. We never know what to give.  Gift cards are always great, but they don't have much sentiment.  Ty wanted something special for his teacher.  He worked ALL day long... typing thoughts, memories and quotes.  I think it turned out cute. His class made a scrapbook too and I'm sure through the week, we will come up with some more gifts for her (including a gift card).

Deck of Memories

Inside of case: Ty's pic

The back: To Mrs. O
From Ty
2011-2013

Each card has a memory, a quote, an inside joke or a thought about his experience in her class.

 He wrote out 52 thoughts/quotes. Some of them are just simply perfect. Some are inside jokes that I don't even understand. These are some of my favorites he used.
"I will always remember you"-Ty
"Thank you for going above and beyond"-Ty
"You made me a better person"-Ty
"The object of teaching a child is to enable him to get along without his teacher"- Elbert Hubbard
"What a teacher writes on the blackboard of life can never be erased"- Author Unknown
"Teachers touch the future"- Author Unknown
"You helped me see what I could be"- Ty
"A good teacher is like a candle; it consumes itself to light the way for others"- Mustafka Kemal Ataturk
"A teacher affects eternity; he can never tell where his influence stops"- Henry Adams
"Best two years of school EVER"- Ty
"What a teacher is, is more important than what he teaches"- Karl Menninger
"The best teachers teach from the heart, not from the book"- Author Unknown
"You gave me strength"- Ty
"Thanks for always encouraging me"- Ty
"The art of teaching is the art of discovery"- Mark Van Doren
"Thank you for giving me courage"- Ty
"Thank you for dedicating your time and your heart to us"- Ty
"I <3 you!"- Ty




I hope she knows how appreciated and loved she really is. I hope she knows that she gave us peace knowing that through the turmoil we have had at home the past two school years, she was Ty's rock and his stability. She has impacted him forever. She was THAT teacher to him. That's an amazing thing!

What I want for mothers day

Mothers day is quite a holiday. We pack in thanks to our mothers for the entire year...in one day.
My kids always look forward to mothers day. I think its just below Christmas on their important holiday list. But why?
I want mothers day to become mothers year! Skip the cards, kids. They are cute and sweet, but defy the point.
This is what I want for mothers year.
My kids not to suck. No more attitudes. No screaming, fighting, crying and tantrums. Id love to not have to break an ankle trying to navigate their bedrooms full of junk scattered. Id love for someone to just the refrigerator door or flush a toilet when done peeing. I would love to take a bath without kids dangling over the edge playing in my water. Id like to go potty  without someone saying "I see your peepee". Id like a can of Pepsi...untouched and mine.
I want my kids to be healthy. I want them to sleep, eat, play, grow. I don't want to check heartrates and blood pressures. I don't want to do calorie and fluid counts. I would rather chop my arm off than sit in the hospital one more night. I don't want to clean up vomit or diarrhea. Id love a full year of no nebulizer treatments, pulsox machines and feeding pumps. I want regular, healthy kids.
But then...
They wouldn't be who they are. I don't want that. My kids are one of a kind. They make mistakes. They aren't perfect. They have a great understanding of life, are braver than most and see the world in a unique way. They learn to fight their battles. They make me appreciate how lucky I am.
I love that all of my kids still snuggle me. Even Ty, at 12, likes to sit with me and talk. I love that they are secure enough to get pissed at me. They know my love for them is unconditional. I love that they think I'm supermom. They push me further than id ever had pushed myself.
Their giggles are worth it all. The hugs and "I love you" makes a bad day great. When Leeya looks up at me and says "you bef fen" (your my best friend) melts my heart. Watching them become little people is amazing to me. I've got super cool kids, most of the time. I'm lucky to be their mom!
So, I guess I have to take the bad to get the good. Id rather have THESE kids than any other. They are the reason I'm breathing. I love them beyond words. And they know it. That's really all I need for Mother's year.
Maybe the card will be nice again this year too.

Abby changed Leeyas's gtube/tutorial

This is what the AMT mini one balloon button looks like. 

The balloon is what holds the gtube in the stoma .

Abby did her first gtube change (without any help) on Leeya tonight!!!  I'm so impressed with how well she did.
I'm also kinda laughing inside. She is only 10. So many people (adults) get nervous about Leeya's gtube. Its hard for them to believe that its actually quite simple to replace.
I do get it though. I remember being so scared when Jaxson got his gtube placed. Its almost impossible to screw it up though.
Changing the button still is dreaded. Its a little gross and neither Jax or Leeya like it. They cry. It doesn't hurt, it just feels weird. Typically, I change out their tubes every 3 months (or sooner if they pull it out....I have very active kids)


Here's a little photo explanation on *How to change a gtube*.

1. Get your supplies ready. I have the spare button covered in  lubricant, an empty syringe, a syringe with 4ml water, paper towels, baby wipes (out of view) and the plastic blue tee (its an amt mini one thing). 

2. Insert the empty syringe into the side port of the button.( It actually says "BAL" on the spot, so you cant forget. ) Pull out all the water. 

3. Pull out the button. The hole you see is called the stoma. It is the entry to the stomach and does not need to be sterile. It doesn't hurt, but some stomach contents back out. Kinda gross, but no grosser than a little vomit. That's why we use paper towels. Before inserting the new button, we wash the stoma off good.It does close FAST. If a new button isn't inserted quick, it will close. Which the requires either a painful dilation or a new surgery. Some people claim the stoma wont close for an hour. In my experience, it starts closing up almost instantly.

4. Once you wash off the stoma, stick the new button in. Its seriously THAT simple. Just push the stem with the balloon deflated right on the stoma. You may feel a bit of resistance, but its usually because the kid is tightening the stomach muscles. You cant screw this part up. The only place for the new button to go is in the right spot! I'm sure there is a rare occasion that this hasn't gone smooth for someone, but Ive never heard of it.
Once its in, insert the syringe with the water in it and re inflate the balloon. 

And..................Its over! :) The only thing left to do is kisses and snuggles!

Dear judgmental mom...

Dear judgemental mom (*If you need to question if I'm talking about you, then I probably am.),

I'm not perfect, I know that. You make it very clear that you know it too.
I am overprotective. I am too permissive.
My kids are too loud. My kids are too shy.
I spoil them. I don't give them enough. 
My kids don't have enough responsibility. I don't let them be just kids.
I discipline either to strict or too lenient.
The kids are in too many activities or not enough.
I'm well aware of my faults. 

What you don't see is this:
My child is taking her clothes off because she has sensory problems. She gets occupational therapy for that.
My child wears sandals in cool weather...its because she is at an age to take responsibility for her own decisions and I'm trying to teach her to be independent. Nobody has ever died from chilly feet.
My son throws a tantrum or starts crying...its because he is stressed out because you won't stop hounding him to speak to you. He has a speech disorder and is aware that people can't understand him well. He gets embarrassed and that is how he reacts.
I can't be a room mom or volunteer,although id like to. Instead, I'm home taking care of my little ones, doing therapies and appointments. Its not that I don't want to be there, I can't be.
Yes, my younger two kids are tube fed. That wasn't my choice. Its not because its easier. Its because without it, their health was suffering. They won't eat if they get hungry enough. Its not a matter of pickiness. Its a medical condition and if left for battle of the wills, they'd rather starve. 
My car is a mess, I forget to sign permission slips and sometimes(often) I call my kids by the wrong name. I am exhausted a lot and have bad days. However,  I wouldn't have it any other way. My kids are worth it all. (and they know that)

I used to be like you, judgmental mother. I never saw the world like I do now. When I see an 8yr old throwing a temper tantrum, I understand. If I see a 4yr old with a bottle, I get it.  I might not know why, but I know there's a reason.
I don't always make the right choices. I never got an instruction book. Some decisions I make are based entirely on being tired or worn out. There is a reason for that too. 
I like my imperfect life. I like to learn from my mistakes and allow my children to learn from theirs. I'm not afraid to admit to them that Ive screwed up.  They need to know its OK. Nobody is perfect. I'm raising independent, strong and very well loved children. They are happy. They will grow up to be great adults, no matter if they choose to believe me they need a coat on or not.  That's really all that matters.
So, judgemental mother, I hope you understand. I'm not going to grimace at you for all the things I disagree with. I just want you to remember, I already know how imperfect I am.
Sincerely,
Mom of the year

Playing doctor....

How a GJ looks. The ballon holds it in (in theory).
The long tube is threaded down his
stomach into his intestines.

I remember when my older 3 kids  were young. They used to play so nice. They loved playing house, school and...doctor. Back then, they used their crappy plastic stethescopes and looked in eachothers ears. Cute and harmless.


Oh, how things have changed!!

Yesterday, Leeya got her stethescopes out to play doctor with Jax and pulled out Jaxsons GJ tube!! For real. They don't play around with colds. My kids imitate surgical procedures.They take playing doctor to a whole new level. 


AND YES, I flipped my lid. I never claim to have good language, but at the moment I saw Jaxsons gj dangling halfway out of his stoma, I think I beat world record for using the f bomb. There was blood dripping, brown stuff pouring out (no idea wtf that was-his formula is white) and I panicked. Big time. The tube was only half out. I couldn't remember if I pull it out, push it in..or cry.


My first thought, besides F***! Was to call 911. But, after a second, I remembered our prior (2) 911 calls (different kid) and realized that they can't handle this. I need to. Its not a huge deal. I got this.
I grabbed my emergency kit. Inside, I keep a new g tube button, packet of lubrication, a syringe, gauze and tape. I pulled the rest of the gj out and popped in a shiny new g button. It went in fast and easy. Relief!
I immediately took pics and posted on my feeding tube support group for reassurance. I was still super panicky. These women are smarter and faster than any Dr we have dealt with. I cleaned up the blood and goo and paged the GI on call.

 
No response from GI, but Jax was happy by now and playing again. I set him up to sleep on the couch so I could keep a close eye. He fell right asleep. I totally overreacted with my panic. I just wasn't prepared. He was fine. It hurt me much more than it hurt him.

  After a million phonecalls and pages, GI finally called back. (today) Jaxson is to start g feeds at a rate of 40ml/hr. If he starts puking, he will need to be admitted until they get his size tube in stock. This could be as early as Monday, but most likely Wednesday. Because it will be so long without nutrition, they will need to start him on tpn temporarily. (which for the record, I think it completely ridiculous) Barf. It also means I will need a babysitter for my other 4 peeps. Its also Skylan's gymnastics banquet and Mothers Day weekend. Ugh.


Im hoping I can keep him hydrated at home. REALLY hoping. So far, so good enough. :) 

*Update: Sedation team called. Jax is now scheduled for a new, shiny GJ tube on Monday afternoon!