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, April 8, 2013

Spina Bifida Clinic - Carry On

We had our spina bifida clinic this week.

It has been almost 14 months since our last full appointment, and even though most things have stayed stable and relatively in control, I still was ready for this appointment. I had a couple of focuses - school and poop. And we had a whole group of families who were going to be able to meet up at lunch!

Nick got his game face on!

We had him walking around in his walker the entire time. Showing off to everyone who got to see him grow up until our baby group ended in last spring.
I had some things that I wanted to focus on.

Number 1 - I want a bowel routine. (Skip ahead to Number 2 if you don't want to talk poop). Something effective, something that will help us get out of diapers. Something that is not suppositories (which we have been trying for the last year). I have been trying to get a routine for almost a year! I talked about it in this post last May. And we have (knock on wood) solved our constipation problems and want to work on our clean-out issues.
The advice that we got was to continue with the suppositories, that it will take weeks to get results. To be consistent. To time things appropriately (sit on the toilet 20 minutes after eating, knees elevated).
We have been doing this. For a year. OK so we haven't been that consistent in the last couple of months, because it seems to be messier for the day after we do this, because it seems to work well for consistency but not for routine.
And even though I trust our nurse Julia and value her expertise and opinion, I also trust my own instincts and believe that we are past this point and should be trying something new.

Number 2 - I want to be as ready for school as we can be. And I talked about my concerns. A lot.
We talked about how far he has come in the last year. I sometimes forget that 18 months ago he wasn't talking at all. And now he talks as well as Katheryn.
But I'm worried about his learning. I am always aware that spina bifida makes him more likely to have learning difficulties (but I'm not sure what that looks like yet). And I'm worried that some of the things that I'm seeing now with his learning are more spina bifida/hydrocephalus related and less 3 year old/boy related.
Specifically that he is counting, counting numbers and counting things (to about 15 - which he has been doing for a while) but he isn't able to recognize numbers, or letters. We've been working on it, but he isn't showing any progress with recognizing numbers or letters.
I'm not sure if it is how I am approaching it - "Nick what letter is this" and he freezes. Or that he just isn't getting it. I've started pretty simple. When he does reply he usually says "A" or "4" for almost everything. Or just doesn't say anything at all.

We talked with the clinic psychologist as well, about school needs and expectations. But at the moment we still don't know what school we will be going to (but since we haven't heard and it is April, we are hoping that means yes to Campbell's). So we will follow up with her in the summer some time.

Number 3 - I wanted the opinion from physiotherapy about forearm crutches. Pretty much she blasted that idea out of the water. (This is the same physiotherapist that told us that Nickolas functioned at the L3 level, which I have never believed.) And it is not the physiotherapist that we have seen primarily at Bloorview, so I'm not actually confident that she is aware of Nickolas' potential. So I won't always agree with her opinion, but still listen to what she has to say.
Kyle and I have been thinking of fore-arm crutches for Nick, to make something that going around the classroom easier and less bulky than the walker. And last summer he was doing so great with the canes that I have been looking on and off for some canes for us to purchase. But somewhere along the way the idea of the forearm crutches came up.
After we got over the initial strongly negative reaction to discussing crutches, I actually heard what she was saying. The base of a crutch is one point, whereas the base of the cane (quad cane) is 4 points and a stronger base. But he has to have pretty good balance for it to be effective for mobility. Right now his walker gives him the ability to stop and rest when needed, and this isn't there for canes. He must be stronger and more solid to use something that is not the walker.

We went through all of this before lunch.

And lunch was a very important event for us.
Because we had a date.
Through the facebook group we discovered that 4 of us families were all going to be a Bloorview for clinic on the same day. So we all exchanged numbers so that we could connect. There was actually a whole lot of people that we knew that day. Unfortunately our times didn't meet up with Stefanie and her son, but we did get to have lunch with little Alejandra and mom, and also meet a little girl who I knew before she was even born, and her parents! Another family who I have talked to online was also there to meet for the first time in person.
This was our lunch group:
Josh, Amberly and Claire, Antonella and Alejandra, Nick, me, and Kyle - and in the corner (no realizing she was in the picture) is Shauna, who tries to be at all of clinic groups. As a representative of SB&H.

We hurried through lunch, to wait and wait and wait in the waiting room for our afternoon appointments. During this time we got to connect with some other families we knew from baby group. And see how much everyone has changed!
Nick had a lot of fun playing with another little girl on the carpet. They were chasing each other around, she is walking but spent a lot of time crawling on the floor with Nick as well which he really liked!
Nick gave up on his walker to crawl around on the floor. Or what he is doing in this picture - which is raising up on his knees. He has been spontaneously doing this for a couple of weeks, getting stronger and stronger! (And higher than in this picture)

The end of the day was spent with the docs. They didn't tell us anything that we didn't already know. Orthodically he is great. (I can a concern about his legs bowing a bit, but the bone doc said it wasn't anything to worry about - so I won't).
Urologically we got a lot of information from a surgeon. Because that is what he is. He spent the entire time talking about the MACE surgery versus a caecostomy button and explaining the 2 different procedures.

This is a surgical procedure that gives us (and in the future Nick) the ability to clean out the colon from the top down (antegrade enema). So that enema solution can go in the top of the colon through a stoma (hole) from the outside of the body to the inside. It is supposed to be a very effective way to achieve social continence and is more effective than the bottom up (retrograde enema) approach of regular enemas. 
There are 2 different ways to do this, 2 different types of surgeries. Including a simple radiology procedure to put in a tube from the outside to the colon (like a g-tube) - the caecostomy. Or a laproscopic surgery to use the appendix to make a natural tube from the belly button to the colon  - the MACE.

It gave both of us an opportunity to ask questions, get answers. I have looked extensively into these surgeries and made my decision of what I would want (MACE) but Kyle hasn't. And while the doctor said we could do this at any age, I'm not ready to put my son under the knife until I am confident that we have tried every other option there is out there. It also gives us an idea of the procedure to follow once we make the decision that it is time. In my mind I'm thinking 6 or 7. But the idea of an elective surgery for my child still makes me a little sick.

So that was our clinic visit in a nut-shell (like a coco-nut). I hadn't expected to write so much.
Clinic didn't have any big news, it was pretty low key. It mainly reinforced things that I already had in mind and gave us a plan.
Good thing nothing major happened, because this visit actually fell on Katheryn's birthday. And our day was jam-packed full of birthday-traffic-clinic-traffic-birthday-dinner-sleep.

Hopefully we will have an uneventful (but community filled) clinic visit every year!

1 comment:

  1. Caitlin doesn't recognise letters or numbers either no matter how hard we try she isn't getting it yet - she is about the same age as Nick, and I bought it up with her teacher last week who said at this age its absolutely nothing to worry about, she thought she wasn't behind at all in terms of learning at this stage :)We use suppositories too, and they keep C clean for about a week before she starts having accidents, nurse said Peristeen is the next step but have to continue with suppositories as well for at least another month. Hope it starts to work a little better!