MACE update

We continue to battle with the granulation tissue. Every time I think I have it healing something else brings us right back to the beginning. I also have a feeling that Nick has been scratching at it. If you have no desire to see pictures of granulation tissue in the belly button up close... just skip this post

There has been trial and error in the process. I have been taking pictures every night to try to look over the progress. Which gives anyone who looks at my phone pictures a bit of a double take.

We used an antacid, Milk of Magnesia, in a liquid that I put a small layer on with a Q-tip. I also tried to soak the Milk of Magnesia in a gauze square. After about 3 or 4 days I found that it wasn't making any difference.So I thought I'd try my other plan. The Tea tree oil.
I mixed 1 1/2 tsp of water with 3 drops of tea tree oil, soak a gauze pad and taping the pad in place for a couple of hours. The first couple of times the skin around the belly button turned red, so I added vaseline around the belly button, so that only the granulation tissue would get 'treated'.

 After doing it for a couple of days I started to have some difficulty putting the catheter in. Because the tea tree oil helps wounds to heal, I was afraid that it was helping too much and starting to close the stoma.
I looked up a bit more online and found that the sites that discussed the tea tree oil had a catheter left inside the stoma. So After our nightly routine I cut a line into a gauze soaked with the tea tree oil and wrapped it around the catheter. Then the taped the whole thing down and left it in over night. Kind of like how the catheter was left as the MACE started healing originally.

That worked pretty well.
Except for the skin issues.

Regular hospital tape left red marks, Clear tagaderm (the IV covering clear tape) actually left blisters. Paper tape and the white dressing tape were the only ones that Nick's belly did not react to. Except that it leaves his belly all sticky, but in the long run using some Remove pads helps.

I've left the belly button open to air some days and covered it with a bandaid other days. I think that the bandaid helps to protect it when/if Nick scratches at it. It will look like it is healing well, and then the next time I turn around it is right back to where it was. Any irritation no matter how small makes the granulation tissue grow. The progress we see is measured in mm. It is very frustrating.
The only thing that keeps me from really freaking out is that it doesn't actually both Nick. It is all just cosmetic.


One night the catheter came out and sat against the tissue and irritated it. Back to square one
Another day the gauze that is on the inside of the bandaid came undone and was resting against the tissue and irritated it.
One little scratch and we are back to square one


I am continuing to treat it with the tea tree oil and the Milk of Magnesia, but in the end I think that we are not doing anything to prevent the use of the silver nitrate. Maybe keeping the granulation tissue from getting worse?
I only hope that the silver nitrate will actually be a solution.

Because in a month between these pictures, I'm not sure how much progress we actually made

 Of course for those that are interested I'll follow up with how the Silver Nitrate works out. I've been in contact with the urology NP and she wants us to continue. We see Urology for follow up the beginning of November (and hopefully the Silver Nitrate).

A Thankful Family

Thanksgiving means that we see a lot of family, and do a lot of travelling from cottage to cottage. It was definitely more fun with this guy dancing away

The beautiful weather for Thanksgiving meant that we had a ready-made backdrop for some pictures.

We haven't had a nice family picture for a while. So I knew just what I wanted

And of course some fun of well

There were a lot of kids up at the Kushog cottage.

The older kids were all excited to show Katheryn and Nick how to have fun in the leaves.

Like rolling down the hill!

And running through the leaves

Dumping leaves on each other

Making a leaf pile

And of course jumping in the leaves

The lake was beautiful, even Sammie went in for a dip

The kids even wanted to pose for some pictures

This is the surf board pose

With 25 family members and 1 cottage we spent most of the time playing outside

It was a great time to catch up with family, the ones who live near and also the family that we only get to see once or twice a year.

What a weekend to be Thankful!

Thankful for Pumpkin Hunting!

 For Thanksgiving we went for our family cottage weekend.

All of the kids went to the pumpkin patch. The first things that they headed for was the maze. And found the way out. But after turning back in and making some other choices run through the maze

They had cow and horse wagons, so when Nick got tired then he could ride like the other kids. And Katheryn and Madi liked pulling each other too.

Nick liked taking some selfies!

Katheryn's favorite part of the pumpkin patch was the pumpkin gun! She got the target too!

Nick was very particular about what he wanted with his pumpkin!

While showing off his standing skills

The pumpkins were a great photo (and photo-bombing) opportunity.

The leaves were so beautiful! But I think that the kids got a bit tired of my pictures. But funny-faces are good too

Back at the cottage the cousins had some play time together.

And our last fire of the year.

And some hide-and-seek

 Talking about Thanksgiving, the kids were all very happy for their food and their family. And of course their cousins!

Shake it off

October is spina bifida awareness month in the US.
The parents and adults in my various SB groups are really knocking awareness up a notch this year!

A group put together this video, they asked for video's from the group to make up this video.
It is so fantastic!



In 5 days of posting, there have been over 17, 000 views!

Other part of their awareness campaigns are #embracethebif showing what spina bifida looks like, and a public group to show photos.
The SBA (American association) missed the mark (like the CEO... who does not have SB... advertising that she has a bum knee and can't run like she used to, as their campaign). All of this is driven by parents/adults with spina bifida.

Take a minute to watch the video and see what spina bifida really looks like!

Scout!

 Katheryn has been enjoying Sparks, the first step of Girl Guides.
She has had a lot of fun, selling cookies and playing games. Doing crafts and running around the gym with her friends once a week.

I thought that it would be fun for Nick to do the boy-version of Girl Guides as well. Which is scouts. I contacted them in the summer but didn't hear back from them regarding accessibility and the Beaver program.
OK, I thought, that is my answer.
But they contacted me the middle of September, and after a bit of back and forth we went to try out a night.

Nick had a blast!
There were games and crafts. They had some racing games the scout leader weren't sure he could play. I said that yes he could play and race, he will just be slow.
Nick felt very included. They do some hiking, so we'll see how he does in his wheelchair, but the leaders seem to be very inclusive with what they will do.
And none of the other kids seemed to treat Nick different at all.

So we officially have a Beaver Scout!

Nick is very excited

And if you want some girl guide cookies (mint-chocolate) we have some of that too!

(and popcorn coming soon)