May there be Poop!

Anyone who is squeamish or not interested when they see the initials T.M.I. you might want to skip this post.

I have been looking and thinking about poop for the last couple of months.
The polite way of discussing poop is 'bowel management'.

I am so ready for some bowel management!
Nickolas has been dry between cathing for a while, so it's just poop right now.

I have dreams of getting him in big boy underwear.
I know it is just a dream right now. I know it. But I still have it.
So I've been looking at ways to get there.

I've talked alot with Julia our nurse at Bloorview, both on email and at baby group, about what we need to do, and she's had a number of suggestions. As well, our January education session involved poop talk, and we all got copies of this chart.

 I have started to record what we get and when, and how. I have a whole excel spreadsheet (that Jennifer - our daycare - has been wonderful in not thinking I'm crazy and filling out).
My plan is to try to figure out what works and what doesn't.

We have been fighting differing degrees of constipation for a while. And I'm really sick of it. I want something to clean him out so we don't have the constipation.
And of course being clean in between.

 I know this is not something that happens over night. And I know that we are super early in trying to get a handle on this. But I still want to try.

I've also been doing my research.
Through SB University and their bowel session. Also I watched a online web session with Dr Levitt at The Colorectal Center through Cincinnati Centre. I've looked all over and can't find the link.
I took notes.
They have a whole bowel management program to get kids out of diapers starting at about 3 years. (OK we aren't at 3 years yet, I know that).
Part of this program is a 1 week program using contrast and x-ray to actually visualize that what you are doing to clean kids out, actually is cleaning them out.

So we are just in the beginning of my clean-out project. I know this is going to be one of the most challenging parts of our spina bifida journey. I know we'll get lots of bumps in the road and I'm probably setting myself up for failure by starting so young, but I'm a bit impatient.

So far our experiences have been
Glycerin suppository - doesn't move anything.
Fleet (or saline) Enema - works, only if it stays in. And very messy
Julia doesn't recommend the enema because it is more difficult to stay in. She recommends going the suppository route for now.
- and after a couple of recent messy attempts that really got us nowhere, I'm finally listening to her.

Our newest line of defence, which seems to be working is another suppository. Child version (5 mg - or half of the 10mg).

Sorry again if this is all TMI, but I did warn you.

I have also been looking at getting out of the store diapers and into more cotton ones - more big boy underwear?
Not really ready yet, but these are where I've looked so far.

http://www.etsy.com/listing/72908455/cotton-toddler-boys-training-underwear

And these from Pampered Tush - Gretchen raves about them, and so they have experience with spina bifida.

http://thepamperedtush.com/gallery/cotton/trainers/

I'm amazed at the products that are out there today!

Physio, physio, physio - Back to Basics

I have a feeling I’m going to have a lot to say about this in the coming weeks.

We’ve been looking at our options after being ‘dumped’ by Grandview. Yes I know that is not what actually happened. But that is how it feels, so I’m going with it.

We met with Katie, our infant development worker (who we LOVE) and she brought us information on private physio. Today we went to mom and baby group at the SB clinic at Bloorview. We have assessment by the RN/PT/OT/SLT/SW (I think those are all the letters) for an hour, then parents leave for our own private education and group. We end up socializing and talking amongst ourselves for about half the time and squeezing in some education at the end. It’s almost as if we need another hour to socialize and get to know each other. (Actually we talked today about meeting at noon for lunch and socializing before group).

At group today I had the opportunity to talk to the physio at Bloorview. We talked a little about what he was doing (because he really refused to show off anything). We talked about what went on with Grandview, and how I feel we really need to get more physio.

I left kinda feeling like we have been totally on the wrong track for the last couple of months. And I’m not sure how we got off track. OK that’s not true. I do know where we got off track. We tried to skip some steps.

So I have some goals, some plans to follow up on. We are going to work A LOT at home. A LOT more than we have been doing. Thank you Gretchen for helping me realize that we will be doing the actual doing of physio (commenting on my post when we got 'dumped'). So a break doesn’t actually mean no physio, it just means more effort on our part. As long as we have some guidance of what to do and not to do.

So our plan. Standing frame, standing frame, standing frame (I guess I just feel like repeating myself a lot today). Work on lie to sit. Consistently. As well as hands and knees, and kneeling. All of these I know Nick can do. It’s just getting him to do it more often. Also more ball work (core, core, core).

These are basic. And they’ll lead to the next steps. Stronger legs, stronger core, more confidence. So that when he’s standing at the couch, he’ll be stronger and more ready to take those steps. Because then he will have some basics behind him.

I think before we were concentrating more on the standing (which is great), but not enough on making sure he had the skills to back it up.

It reminds me a little about learning how to play piano. I took piano lessons when I was younger. I enjoyed it, mostly. But what I really wanted to do was play my Les Miserable and Phantom of the Opera. So once I took a couple of years of lessons, played lots of very basic stuff and learned how to read music. I could read the music, and could play some of the music and stopped lessons. I can play sorta well with my right hand, and only 1 or 2 songs with my left hand. I can do a couple of the songs but that is it. I am not a very good piano player. Pretty much, because I skipped a bunch of steps. The basics.

Physiotherapy Woes

Physiotherapy.

A core therapy in our daily life. A key member of our health care team.
Exercises and working with the goal to reach Nickolas' full potential.

And one of the things that makes me doubt and worry. Are we doing enough, can we do more, are we doing it right? (These are not new Questions). THIS is the thing that is supposed to help getting Nick mobile, getting him independent. THIS is the person who is supposed to work with us and help us reach these goals.

THIS is the person who made me so excited 2 weeks ago when she mentioned the 'w' word and helped us with exercises and activities once Nick started standing. Was it really only 6 weeks ago?

We still have more to work on. It is more than just standing, and trying to get him to cruise. Getting him stronger on his feet and more aware of how to move his legs. Strategies to help him.

 Nick hasn't sat himself up  until Tuesday, and we've been working on it for months and months and months. We still have kneeling and 4 point on the goals list. Getting more core strength. And there are probably other things on this list of things for us to work with physio that I can't even think of. Nick is juggling lots of different balls to reach his goals. Instead of just concentrating on one thing!

For example, I don't know if some of the games I play with him are actually helping or just play. When I'm changing Nick and cathing him. I get him to try to kick my hands when I hold them above him. So that he is bending his legs at the knee and not the hip and controlling his foot. Is this just a game? Nick likes it so yes. Is it helping? I have no idea? Is it hurting? No. Is there anything better I can do that would help more? I am out of bright ideas.

So not that we've established the importance of physiotherapy, we get to our woes.

Our physio block, that we had just started 6 weeks ago (and missed 2 weeks because of sickness) is done. Not only is it done, but when someone will call us 'in May or June' we will have a new physiotherapist. Because caseloads are being shuffled. So now Nick will get another new face he has to get used to. And we had just started getting some work out of him without crying!

I felt like we were just getting started, getting comfortable and then had the carpet pulled out from under us!

So now I'm looking at private physiotherapists. Because waiting until 'May or June' is just not acceptable. Nick is 16 months old (well, actually 16 1/2 months). He has had 5 PT sessions since he was a year. That is just 5 session since he got his standing frame, since he got his AFO's. 4 sessions since he started to stand on his own.

This is the therapy that is supposed to help his mobility, help him reach his potential. And here we've been doing (what feels like) nothing for the last 4 months! Either waiting for physio to start, or waiting for him to feel better, or finally getting to physio, just getting started, just starting a plan and it's over. For another 2 months!

In May he will be 18 months. So that is 5 PT sessions in 6 months!
There is NO WAY I'm letting that happen!

You tell them Nick!