Clinic Time

We haven't been that eventful in the Ridding house! Seems like I haven't blogged in ages!
We had our spina bifida clinic again on Friday.
Pretty unexciting - which is what I expected. Always a good thing.

We had actually been at Bloorview on Thursday to deal with a red spot that Nick had on his heal.
That red spot worried me. Nick's foot had been coming out of his AFO and Kyle had noticed a dime sized red spot on Nick's heal on the weekend. So no more AFO's, no standing, no walking and waiting to be able to see orthodics. But they hollowed out a bit more of the heal, added some padding and away we go!

Today was an actual clinic day. All good news.
Urology/nursing - kidney/bladder ultrasound, all clear, no problems, continue as we are doing, see us in 6-9 months
Physio assessment - all good, he is doing amazing
Ortho - no issues, all clear for 1 year
The only thing was that Nick's scar makes it hard to tell if his spine is straight or not just by looking. He also has a part of the scar that got infected and is all indented, the part that runs along his side and isn't red, it is actually indented while the rest is pretty flat. (Out of Nick's scar, this is part I hate the most, but what can you do?).
In the end, they think that yes, his spine is straight, but it's something to pay attention to.

The best thing about the spina bifida clinic was that I got to spend it with Shayna and her son Gage - who is absolutely adorable!!! (You might remember Gage as the baby who was born last May, and I got to be there).
Instead of sitting around waiting for everyone to come and see you, Shayna and I got to wait together and people pretty much just found us.
That was great!
I think every clinic visit should be like that!
We talked about getting a picture of the boys together but didn't get a chance to.

We had some time for Nick to play with the fish tank.
I have a video of Nick (slowly) wheeling his chair around the fish tank, but it won't load. So I'll try to load it for another post.
Nick likes the fish so much I thought it would be good incentive for him to stand at (still working on getting him to like simple standing at things). Needless to say Nick was less than impressed about standing at the fishies.

Once he got his balance and realized that no, he wasn't going to fall he got a little more brave with the standing. (Sorry for the lousy pictures, my camera's flash stopped working - something about not liking that last fall to the floor or something, electronics these days!).

 The clinic is divided into 2 half days. The morning is when you see the nurse, physiotherapy and get necessary ultrasounds. Then there is lunch, the physicians get the opportunities to review all of the tests and assessments. In the afternoon we get to visit with the doctors, get the results, get the plans and go from there.

At the end of all of this Nick and I still had one more exciting meeting (never thought I'd say that!). But I'm going to leave that for a new post!

Appointments, appointments... and ... wait for it... more appointments!

Our summer has been very, very busy!
I feel like I've been a little lax on the updating. Sure I've posted a bit, but not as much about what we are doing. Why? Pretty much because we are doing it!

We started physiotherapy at Grandview in June.
We continue to see Katie our infant development worker.
We continued with our private physio.
We had speach therapy with Katheryn
We had an MRI at Sick Kids
We followed up with neurosurgery at Sick Kids
We saw a developmental peditrician as part of a research study
We saw our regular pediatrician for a weight update (27lbs 9 oz)
We had the spina bifida clinic (split into 2 days)
We had the Conductive Education consult
And finished the summer with 2 weeks of intensive Conductive Education

We also had trips to the zoo, a number of weekends up at the cottage, a family reunion and a whole lot of birthdays (and 1 birth-day)! Oh, and I continued to work part time, luckily I have a great work partner and we were able to schedule around each other well. The joy of 12 hour shifts is that I work less actual days (or nights), you are just wiped out when they are done.

When I look at my calender of July - I have 5 blank days. 5!!! And August was the same!
Kyle claims I bring it on myself - and I guess I do.

But its summer time! Its the time to fill the days with fun things to do when you have time off. And fill the rest of the time with what you need to do!

At the end of the summer (OK I know its just the end of August and not actually the end, end of summer) I want to look back (and have the kids look back) and think that they had alot of fun with parks and zoos and lakes and cottages. And at the same time we have Nick in tip-top shape - completely checked out.
Neurosurgery cleared us for 1 year!
Spina Bifida clinic cleared us for 6 months.
We are nearing the end of our block for Grandview Physio. (and we have a borrowed walker for now, and will order one at our next visit)

We are investigating some other therapies. We have our private physiotherapist and a second private physiotherapist that is also an osteopath (and fantastic!) and we are going to continue the conductive education (weekly). So September is looking slightly less busy, but still productive. And some recreation activities.

I'm amazed at how productive and great Nick is doing!
In May Nick was not transferring lying to sitting. And now!
Pulling himself up to stand, climbing over a single step. Kneeling really, really well. Kicking up, down, side to side.

He has a couple of words too (weird words, and he'll say them for a couple of days and not repeat them). And when we try to get him to say something - he gives me a look, like he's saying - Ha! You can't make me and I will grace you with some words when I feel good and ready!

Hugs all around!

Spina Bifida Clinic - part 1

We had our spina bifida clinic on Friday. This is part of our crazy, crazy, super crazy month of July! It happens every 3-6 months or so, when we cluster all of our appointments. So for a couple months we seem to live in the hospital or clinic.
Nick is happy to just sit in the waiting room chairs like a big boy!
Get used to it baby boy!

And we brought lots of things to do! And tried to keep things a little fun while we waited...

and waited....

and waited!
I think the waiting may have turned Nick a little goofy!

Nick totally rocked the developmental pediatrician!
Lots of smiling and interaction, even a couple of babbling words. And waving good-bye (once she left the room). And we have some goals to work on more words. She suggested we try animal sounds! Sort of like cheating at making words!

This is Doctor Church with the spina bifida clinic at Holland Bloorview. Not only is she easy to talk to, friendly and great with the kids! But she has spina bifida herself! How cool is that?!!!

We made it through pediatrics, kidney ultrasound and tried to fit a quick trip to orthodics before urology.

Then it's back to more waiting. And fooling around!

And trying to sleep - mainly because Nick doesn't like to nap when we are out. He didn't actually sleep. More like lay his head down, and then pop it back up and ready to go!

That's not working! So let's try to escape!

And pull out the bottom of my distraction activities! 2 new books!

And we'll round it out with some standing!

Nick's newest favorite word - uhoh! That's a word right?

Nick had the opposite of white-coat syndrome with the urology resident. Every time she left the room (to get an answer for a question I asked her) Nick wanted her back! Poor resident was asked about starting a bowel routine, increasing ditropan, changing the mode of delivery (what about right into the bladder?) and a prescription for the UTI.

Then she said she was going to come back so we could problem solve why he got a UTI. What?! What is there to problem solve. He is cathed regularly for the last 20 months, he's had 1 UTI (without fever or crankiness) I'm pretty happy with that.

Over all, Nick checked out well for everything. We got some antibiotics (finally) for a UTI Nick has been fighting since last week! Not happy with my home pediatricians response time to that one! AND I signed our family up for another research study. (Ask me to participate in research and I'll jump at it!) I have to read it over, but I'll blog about it later (it is for the drug company for birth control to add folic acid, and the experiences of living with a child with spina bifida).

One thing that I like about the clinic is the ability and opportunity to chat and socialize and network with other families. Now I should add that I'm a touch social. I'm not quite sure how that happened. I used to be the shyest person.

During various waiting times I was chatting with Shauna, who is the representative for the SBHAO who tries to be at all of the clinics. Thanks to her I got to connect with 2 new families who live in Durham region by us!
She connected me to a family who lives in Bowmanville and have a 2 month old! I think I might have talked their ear off a bit!
I had also talked to Shauna about a family in Newcastle who had a HUGE SWWR walk that I was sorry that I missed. And she wrote a book that I just ordered (so excited, can't wait to get it!) It was amazing to watch her 4 year old daughter RUN with her brothers!

That's what I love about the spina bifida clinic!

Clinic Visit

We had our second spina bifida clinic this week. I can’t believe it’s been so long since we first went to Bloorview Kids Rehab (now Holland-Bloorview), but it was only 4 months ago. It feels like we live there sometimes. I could drive there with my eyes closed! But everyone there is so focused. So great with everything. We go to Bloorview for physiotherapy weekly, and then once a month they have a mom and baby/child support group, and then our clinic visits. So we can see everyone at the same time. We only need to go downtown to Sick Kids for neurosurgery appointments and tests that can’t be done at Bloorview.

Our appointment started at 3pm, so I knew it would be a long afternoon – we got out at 7pm. We saw the developmental paediatrician – Dr Church, had a renal ultrasound – all good, and we saw urology. The urologists that we see rotate, so the one we saw in January at Sick Kids are part of the same rotation that we see at Bloorview, but so far we have seen at least 3 different doctors.

So the first thing he asks is what medication are we on. Restoralax (Miralax) is the major one – but I keep forgetting it is a medication. But also Trimethoprim, an antibiotic that we are using for a prophylaxis (to prevent infection) because we are cathing. Well it was decided to stop the antibiotic – perfect I was going to ask because he hasn’t had a UTI and I don’t want him to have too many antibiotics unless he needs it. Then the urologist wanted us to start ditropan. Ugh!

The dreaded ditropan. I’ve heard of it before – it is one of the most common medications that kids who have SB are on – second only to Miralax it seems. This medication is to relax to bladder, this prevents reflux (urine being forced back into the kidneys – not good). But wait a sec! I thought Nickolas’ bladder was relaxed – the ‘lazy’ bladder. Well no we don’t know what his bladder is like. We need further study – urodynamics (which we get done in the next month or 2).

OK so I get the reason for ditropan, and I get that it is important to prevent reflux. But I don’t want to start a medication that is unnecessary. Oh and did I mention the side effects? Constipation (give me a break!!!) and over-heating, as well as dry mouth. And he won’t pee on his own.

I’m not entirely happy with our visit – in fact in kept me up at night.
What to do?!

Update!

We had a couple of appointments in the last couple of weeks. All with good news.
Nickolas got the all clear from neurosurgery. We were in and out in 30 minutes. Everything is looking great and we will go back in 1 year and get a followup MRI at that time. YAY!
Physio is going well, he is improving so much. He keeps trying to sit up, work those abs, and when he is sitting up it is much more solid. He used to sit very far forward, with his belly resting on his legs, now he is still leaning forward, but off of his legs and twisting around. All very good progress.

Katheryn got her language assessment. She got admitted to their service. I was concerned that they were going to say that she was ok. I know it sounds weird, that I want someone to say that my daughter is behind in something. But when they recognize it, it gives us help. So we had the assessment and Katheryn's language is at a 21 month level - 6 months behind. I'm amazed at how much she has improved in the last couple of months. And I am very glad I asked for an assessment at 18 months - when I found out that she was a little behind - because after an 8 month waiting list we finally were seen! But now the real work starts!

Whenever I think about how I want Nickolas to sit up by himself NOW, roll over more, start to crawl ect. I want it all now. I'm finding we are progressing, just not fast enough. But it will come. It is the same with Katheryn's language.

So yes both my kiddies gotta get some kind of therapy - my mom tells me that I went to speech therapy, and she is so much like me that I'm not really that surprised. Or worried. I guess that is the key, when to be concerned and worried and when to take things in stride and just go with the flow. We are busy flowing down the river right now!