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!

Wednesday, March 31, 2010

The art of the catheter

When you first get the SB diagnosis you get the whole walking speech and then "bladder and bowel issues". Depending on what side of the fence they are sitting, the doctor can spin it either way (easily manageable or diapers for life). You think ok I can deal with that. He's born and the cathing schedule starts.
I had a head start and experience cathing so it wasn't that bad. Beyond the need to stick that tube into my little newborn's penis. And it goes in how far?! And its worse at the beginning when you are learning, he can't be on his back, you have to wake him up, he is screaming and you are upset and tired.

After doing this for 4 1/2 months I could cath him with my eyes closed! Now the challenge isn't the actual skill of cathing.
Nickolas' cathing has changed in the last month. I had it down to only cathing once a day, then the volumes started increasing. I was getting upset (you might have noticed in previous posts). As if there was something I could do. There isn't. What will pee, will pee.

This is the art of cathing. When you spend 10 min watching pee drip, drip, drip and fill up the container with higher and higher volumes you have to calm down. When you have 10 min to think about it you really need to talk yourself down. There isn't thing you can do to get lower volumes, a neurogenic bladder can be managed but trying to cath less, when his bladder needs to cathed more, does not help.

I've described it to others like an elastic. If the bladder doesn't completely empty and stays too full then its like the bladder is a stretched out elastic. And it can't get back to a tight elastic that can pee on its own.

Nick's volumes are starting to go back down, but I'm trying not the think about decreasing the times I cath him. Yes it would be nice to go back to cathing once a day (or be that lucky baby that doesn't need any cathing!) But that is how you get stressed. Please let me accept what I cannot change. Like the art of cathing.

Ohh big news! Kyle cathed him for the first time on the weekend!!!

Saturday, March 27, 2010

Clinic Days

Sometimes I don't know where the time goes...
We had 2 clinic days last week. One was with Grandview Children's Rehab, which is local. We met with the developmental pediatrician, PT, OT and language pathologist. Pretty much I sat in the middle of this group of professionals (oh yeah Nickolas' infant developmental worker came for my support) with Nickolas and they fired questions at me.
Is he doing this? this? this? what about that? that? that?
And they are trying to see what he could do. He got really grouchy and I had to feed him in the middle of the meeting.

Or (worse question ever) what is he doing?
I try to think of what he should be doing and comparing. Well... he can lift his head, grabs for things, babbles. I've been keeping away from the developmental charts. They ask if he can do something and I think oops I've not tested that. Oops I didn't notice. Ooh he's supposed to be doing that?
It was a bit overwhelming.
He did well in language development. OT and PT both said he would be "admitted". Pretty much that means he gets put on a waiting list. OT (occupational therapy) is fine motor skills. He isn't grabbing things and using his hands as much as he maybe should - but getting better every day. But he did spend 2 months on his belly. How can you develop hand stuff when you spend half your life looking at the ground! (So his 'adjusted' age for reaching and gabbing things is better).
And of course we knew he'd need PT.

Bloorview Kids Rehab we saw on Friday. Another pediatrician, urology and orthopedics. Ortho was in for 2 seconds, looked at his hips, his feet and said he was good. No problems with his heal bone. (Whew).
I talked alot with urology. Pretty much we keep up with the cathing schedule. We cath 3x a day now, and can do less if his volumes go down, but 30cc is his cut off - he should be less than that. And its better to cath too much than not enough.
We don't want this bladder to stay full and not empty. Like an elastic. If his bladder is too full for too long then it stretches out and can't empty. And when we start with food in a couple months and have bowel issues, urology helps with those too. So I'm just keeping with 3x a day - it's just depressing hoping to get 10-20 and getting 50!

We see PT and OT on Thrusday when we go in for a mom and baby group. Pretty much Nickolas is staying his happy self. and he's enjoying his swimming lessons!

Monday, March 22, 2010

Spring is here!

Last week was a better week. Whenever there is something to complain about you are more likely to write about it. When things are going well, you don’t really write saying how great things are. So not writing last week just reflected (I guess) that I was in a good place.

Nothing changed very much from the week before. I am still cathing Nickolas 3 – 4 times a day. I’m still going crazy over my paper (which is ALMOST done). We are working with Nickolas’ head and body control. For some reason I decided last week was the week to start getting Katheryn ready to potty train. Pre-potty training. We’ve combined a bunch of different techniques I’ve read about. We bring the potty with us when we go visiting, we have a book we talk about, we have her dolly who sits on the potty and I bring her with me when I go to the potty (and her potty is in the room too). But I’m trying not to force her to sit on the potty. Her potty sings when she pees, I think she’ll be excited once she can make it sing.

Between the potty adventure and cathing every 4-6 hours all I’ve done is pee! Pee and paper. (For those who don’t know, I am completing my masters and have been writing my final research paper – currently 70 pages). I am soo close to submitting my paper – my due date (personal) is March 31.


Spring is officially here. Boy did we enjoy those last days of winter! Wednesday, Nickolas and I sat outside (while I worked on my paper). Thursday I loaded the kids up to visit grandma and grandpa Ridding and have a play date with Madison and Shannen. They really enjoyed walking up and down the street in the wagon (by they – I mean the adults and the children). They we played in the backyard. All of this without a jacket. Friday the kids got loaded up again to go walking along Petticoat creak with Papa Bartley. We walked – Katheryn ran, and Nickolas slept.

So last week was a good week. Nothing really changed, but me. This week is full of appointments. Tuesday we have swimming lessons with Nick (yay!) and an assessment at Grandview Children’s Centre. Then Friday we have a spina bifida appointment at Bloorview Kids Rehab with urology, orthopaedics and paediatrician. I guess we should get some answers about the things I was worried about last week.

Friday, March 12, 2010

I wish

I wish things were simple. I wish I didn't worry. I wish I didn't spend half my time online looking up things Nick might have. I wish he was fine. I wish I could do something. I wish I didn't think of things Nickolas couldn't do. I wish I didn't worry about his shunt, his neck, his peeing, his pooping, his feet, his development. I wish, I wish, I wish!!! (feet stamping)

Ok now that that is out of my system. I'm thankful for my Nickolas, I'm thankful he is such a happy baby. I'm thankful he smiles and kicks and ha ha's and grabs at me. I'm thankful he is easy going. I am thankful he pees (especially when he pees on me). I'm thankful when he kicks at me. I'm thankful there is an internet I can learn so much from, and wonderful forums with supportive people. I'm thankful I have such a wonderful family that is so supportive. I'm thankful Nickolas is here with me. I'm thankful Katheryn loves him so much, that we all love him so much. I'm thankful, thankful, thankful.

So I balance between wishing for things I can't change and thankful for what I have. Apparently Nickolas has made me philosophical. I can wish for things to be perfect all I want, but perfect is what I make it. Sometimes I think life is so perfect, we are right where we are supposed to be. Other times I'm upset things didn't work out as planned, that I can't have 'normal' worries my parent had, that I'm not carefree. Luckily I'm in my 'happy place' more often then not.

What brought this all on? I've had a couple of worries this past couple weeks.

I've been getting larger volumes when I've been cathing Nick, so I need to cath more often. We see urology next week. I'm also worried about his feet, he has extra padding on his heels. Which ??? could be something called row-bottom feet (this is me looking it up online and seeing it is a foot disformity associated with S1 level of spina bifida). It means that his heal bone is sticking out. To fix it, could mean casting and surgery. Crap! It just caught me by surprise. We see orthopedics next friday and I will ask about his feet and see what they think. Maybe its nothing and I'm just worriing myself about nothing.
Nickolas is also not holding his head up as much as I'd like. So we've been working on tummy time (which he hates). He does hold his head up better over the last week, but tilted. He also tilts to one side (R side) in his swing which could be because he doesn't have the muscles to stay straight. I think because he moves so well I don't want there to be any problems, and I'm fooling myself. I just want things to be the best they could be. We've also been working on playing with his feet, bringing them up so he can see them and touch them. He has his big belly in the way, but they reach. He likes doing this and lifts his hips and bum up.

I think the only thing I do have control over is this Spirit wheel walk ride I've been involved in. It gives me something to do to help Nickolas. It lets me stand up and scream - this is my son, he has spina bifida and I'm proud to be his mother!

Friday, March 5, 2010

Mom and Baby Group!

So we went to our first mom and baby group at the spina bifida clinic at Kids Rehab. It took us about an hour to get there, an hour and a half (rush-hour) to get back. But I'll definitely go again.

There were 5 other moms there, 2 others with infants and 3 moms with toddlers. It was great to go out and be with other moms and kids with the same problems we have been facing (and will face).
The first hour was with physio, occupational therapy, nurses, volunteer and social work. It was a bit of a free for all with playing and seeing how the kids have been doing. One of the kids, 2 years old, was completely paralyzed from the waist down, and it was just amazing seeing him move around and play. He was such a happy boy. It’s wonderful the resiliency these kids have.
For the second half all the moms left to have our own meet and greet. The online forums and everything are great, but I really do like the face to face as well. When the hour was over I wish we could have stayed longer. The next clinic isn’t for another month.

I would be holding Nick and he would just be staring up at me. He did like playing with another little girl his age. Just staring - his first girlfriend. He really is a face-man. You give him a toy and he doesn’t care. You stare at him and he loves it!

Physio also gave me some more things to do with Nickolas. We are working more on tummy time. When I put him on his tummy he doesn’t like it, so I’m working more on that. He can lift his head, but he doesn’t like to. Nick can move his feet but I don’t think he feels all that much. If I hold him up with his feet on the ground he doesn’t really push against them. Sometimes he does, but I don’t think he feels it. So we are trying to teach him what his feet are, and getting him to play with his feet.

I need to take a video of Nickolas in the morning. He wakes up and talks and talks to him mobile, he also talks to the lion on the wall above his crib. About half an hour in the morning I can get out of him. This allows me to get Katheryn ready in the morning. She doesn’t like getting changed at the moment. Screaming when I take her pj's off. But once they are off and she's getting dressed ... sweet and smiling!

Did I mention Katheryn’s new favourite word - MINE!

Monday, March 1, 2010

Olympics!


The olympics are over - I've had alot of fun watching them. And of course dressing up the kids to help cheer. Watching the gold men's hockey game (dear to my heart) we had to scale down our cheering because we finally had the kids napping. In fact, Kyle couldn't move at all for the final winning-overtime goal!


But we did get some cheering in before hand.

I also enjoyed information about the upcoming paralympics. It was interesting to see all the different sports. And to see how CRAZY the athletes are! Downhill skiing! Do I think they are crazy because they are people who are disabled? No way! I think its crazy what these athletes put their bodies through.

Some other non-olympic postings - Katheryn's favorite word - mine. Everything is mine, mine, mine! and Nickolas' newest acheivement - Laughing! Yay! My favorite sound ever!! Listening to Katheryn (and now Nickolas laugh). What was he laughing at? His jungle mobile. In the morning now he wakes up and just lays in his crib looking at his mobile and talking and talking and some little giggles.