A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Monday, February 23, 2015

Boy-humor

"R-E-S-E-A-R-C-H, Mommy what does that say?"
"Research"

"I-N-S-T-I-T-U-T-E, what is that?"
"Institute"
"haha, you said toot"

A couple days later...

"Mommy, do you remember that word I read that was on the wall behind your head?"
"Research Institute?"
"haha, you said toot"

The minds of boys





Monday, February 16, 2015

Walking with crutches

This Family Day Nick decided to show off. I have been trying to get him to use his crutches.


I keep hearing how well he is doing with them, but I really wanted to see for myself. We keep getting his crutches sent home from school and Nick keeps stubbornly refusing to use them. So this family day I got them out and I had a mission.
Nick will show me how he can walk with them.
He is much more comfortable with them than he has been a month or so ago. But he is still nervous. He wouldn't try them unless I was behind him and holding him. So that is what I did... at first.
I stood behind him, holding his hips and he started walking. And I started pulling less and less pressure on his hips. He kept looking behind him and saying "mommy you have to hold me". We did a bit of walking, then turned around and walked back. I knew he was ready to do it without anyone holding him. So once we got everyone watching... the pressure is on... I pulled out my video camera

 

 And he did it! Family Day strikes again!

 At one time he does look back and say he wants someone to hold him. But he just kept on going. I'm not sure how functional he will be with crutches, but you have to start somewhere.
Even with the smaller base I think he found it was more supportive than the smaller canes we have for him. Now we need to continue to motivate Nick to want to walk with the canes and I think he will. We were all so proud of him!


Saturday, February 14, 2015

Love

I finally got organized for our LOVE shirts for Valentines day. And of course took it as a photo-opportunity!


It wasn't all just smiles. 
I got some really, looks from Katheryn


And some no more pictures faces


But I still got some smiles


And some family love



Tuesday, February 10, 2015

Straight A's

Katheryn got her first report card. I couldn't believe it when I saw it. Now I know that she loves school, and is an incredible reader. And she is always bringing home work that she has done, but no homework.

And she got straight A’s. One A+ (in reading of course) and two A- (in writing and music)


We had to complete a section in her report card about what she needs to improve. Um... she got straight A's, what can she improve?
So then I get worried that she's not challenged enough in school and will get bored. So we do have some challenges for her. I have a whole stack of chapter books for Katheryn to read and we talk about her books as she reads them.
But her writing needs to improve (even though she did get an A-). I look at her writing from September to now and there is no comparison. She is getting messier.
Her writing in September is nice and neat. She obviously took time to concentrate on the letters. And now her writing is rushed, she just wants to get the letters down and move on to the next one. I understand being so full of words you just want to get them down! But it is still important to be proud of your printing.

Katheryn's favorite subject is gym. For her report card report, she had to write some goals for the next couple of months. Her #1 goal is to run faster. At my suggestion, she did put neater writing down too.

This is only Katheryn's first report card, and she doesn't really get why we are so proud of her. It's just her normal. We took her out for dinner to celebrate. Her choice! She was just really happy to go out to a restaurant. But I think he favorite part of the dinner was the coffee... just joking, the coffee cup they put her juice in


We had to complete a section in her report card about what she needs to improve. Um... she got straight A's, what can she improve? So then I get worried that she's not challenged enough in school and will get bored. So we do have some challenges for her. I have a whole stack of chapter books for Katheryn to read. And her writing needs to improve. I look at her writing from September to now and there is no comparison. Her writing in September is nice and neat. She obviously took time to concentrate on the letters. And now her writing is rushed, she just wants to get the letters down and move on to the next one. I understand being so full of words you just want to get them down! Katheryn's favorite subject is gym. She had to write some goals for the next report card. Her #1 goal is to run faster.


Monday, February 2, 2015

Dentist in the OR

Nick's OR day came. For his dental work.

I wasn't sure how to label this for Nick. Is it surgery? Not really, but it is under general anesthesia, in the big operating room. Will we prep the same for surgery? Yes because it doesn't really matter to Nick what happens when he is asleep, he is still going to the OR.

I didn't prep him as much as I did in July. We talked about surgery and watched the Sick Kids video and compared it to his MACE surgery. But we also said that he would not be staying at the hospital, when he wakes up we will go home and he will feel better that night.

We kept him well, and surprising no cough or sickness so far in the new year. We had a plan for Katheryn and ready for us. We knew there was going to be some snow, but I thought it was going to start in the late morning.

Our OR time was 8am, and we needed to be there for 6am.

The morning of surgery we were right smack-dab in the middle of a snow storm. And we weren't sure if Katheryn's bus would be cancelled (it was). So we quickly changed plans and my dad drove down to Sick Kids with  me. 3 hours later we finally arrived (safely).

Everyone was late. They rushed through all of the assessment, with everyone coming to us. And we were still in the OR almost on time. Nick didn't get his time to play on the computer.

The nurse who was admitting us questioned the fact that Nick is on latex precautions. Saying that it is unnecessary because hospitals have removed latex.

Without being rude I still tried to say how that was false. Spina bifida is still associated with latex allergies even with latex removed from invasive surgeries and early care (i.e. catheters). Kids and adults with spina bifida still develop latex allergies, so we use latex precautions.

  • Newborns who need invasive surgery (i.e. Congenital Heart Disease) were often exposed to invasive latex, latex gloves in surgery, very early in their lives and developed latex allergies. When this was discovered they removed latex from surgeries and the latex allergies decreased.... except for spina bifida.

They let me go into the operating room with Nick again this time (all dressed up in white overalls). He was a little bit more nervous this time, but did well. And when he was asleep I went back and waited.

About 2 hours later they were done. They did the x-rays, filled 3 teeth and shaved the sides of 3 of the teeth (eew) that had become too mineralized. They did a full cleaning and made some more space in the front of his teeth so that  there is less space for cavities.

He didn't wake up from the anesthetic very well. A lot of crying and "I want mommy" I wanted to climb onto the stretcher with him. He drank a little and then we were able to leave. Nick wasn't happy that we had to leave and he never got to play on the computer in the waiting room.


We did make a quick stop at the gift shop. Nick picked out a stethoscope, and I got Katheryn and me matching surgical caps.


Nick slept for most of the day once we got home. But no pain side effects from the anesthesia.


While this 'surgery' happened just like planned. I really hope that we won't end up in the OR for more dentistry work. While the gag reflex will still be there (which is what prevented doing this dental work without anesthesia), hopefully we won't get more cavities. We've stopped the oral ditropan and continue with tooth-brushing, even with gagging. But we have another 6 more months before we see our local dentist again.