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!

Sunday, July 17, 2011

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?

video

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!

4 comments:

  1. I'm glad you're day went so well (too bad you have to go for another)And it sounds like you didn't fall asleep standing up after the small amount of sleep you got! Fill me in on the loop of these two new families!!!!

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  2. What a great visit! Love that one of his doctors also has SB!

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  3. I'm so jealous! Our clinic appointments have been nothing like that. King's dev paed is not my favourite, I've only ever gotten to talk to 2 other families in all the times we have gone (and 1 I already knew!) and well, it all just sounds a heck of a lot more organized. I guess I should be happy that I'm rarely left waiting?

    Glad to hear it was a successful day!

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  4. I love Dr Church she is so amazing with all of us - I was nervous when I heard Dr Biggar was leaving because we loved him so much, but had nothing to worry about she is beyond incredible!

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