better late than never

Better late than never.


We are about 7/8 months out from our first Monti/Mace surgery for Toby. And looking back oh how I wish I had started this then.   But hey better late than never.


This has a lot of basic information but also has pictures.  I work well with pictures so I'm sharing the link.   I know most of you will know lots about this already because if you are reading  most likely you are and have been looking into a surgery like the one I'm talking about.


Some background information.

Toby has Spina Bifida. Toby has neurogenic bladder. Toby has kidney reflux.


We have tried numerous things to keep him dry or to help him "appear" socially dry.

1. we tried a pad in underwear.  completely impractical as he leaks all the time. we had to change him 100 xs and he still go soaked.

2. we tried pull ups. they came up so stinking high in the back and looked just like a diaper.

3. we tried a diaper with boxer shorts over it.  when toby would get dressed he would forget the boxer shorts, or he would think we were staying home and not care, then we would go out and he would care.

4. we tried cathing every 3 hours every 2 hours every 4 hours. he is like a faucet that is constantly running it just didnt work.  we would get 10 cc out at a cath and then be completely soaked 10 minutes later.

5. we discussed doing injections to bulk up the bladder neck but all the research leaned toward it not working and if it did it wasnt long term.


For bowels

we tried the balloon enema. where its this balloon thing you blow up inside his anus and then the tube fills his tummy up with water from the bottom up. the balloon keeps the water in.  This for some reason did not work for us.  it was a nightmare and we hated it.

around the age of 3 we started using the cone enema. we loved it. it worked great. the older he got though the more embarrassed he seemed by it.
the leaning over and having your mom shove something up your rear just isnt all that awesome.
but we did it and it worked.
then about 2 years ago it just stopped being reliable.  we struggle with every part. constipated, too much poop, too hard poop, too soft poop.
we had tethered cord surgery and it seem to help.
and then a year later it started again. poop at always the worst possible times, and once we had one accident we would have about 3 the same day.  he hated it.



The reason we chose this in a nutshell.

He was ready. He was consumed with the fact that his pull up or diaper might show. He would stop playing 100s of times to pull on his pants, to tuck in his shirt and to otherwise check.  We had young kids see it (it undoubtly snuck out the back of his pants) and yell "WHY ARE YOU WEARING A DIAPER!!??) Toby was devastated.  I knew he thought about this kind of stuff all the time. He worried his friends would know. He worried someone would open his backpack. He just worried adn it consumed him.
 It was hard to keep the smell of urine off of him and he was starting to not care about that part. We wanted to do this early enough that he still cared and that he still wanted this.


So obviously this is the very first entry and very very basic.   but so far. thats the way i work.  I hope this process helps.