Six Questions

Jill tagged me to do these questions last month.
I thought it was a cute idea, cut and pasted the questions here.... and left them for a month.
So better late than never! Here we are!

1. Is this how you imagined your life would be?
No, it is so much better.
I didn't really imagine what my life would be like growing up (beyond children), but I know that I am exactly where I am supposed to be. No doubt.

2. What's your drink of choice when out with girlfriends?
Tea. Definitely tea. I have a whole cupboard full of team.
Oh, do you mean out with the girls at a bar? Hmm I can't really remember that far back

3. What hobbies do you have that you don't mention in your blog?
I don't have very many hobbies right now, I try to write in my journal a little different from my blog, but that has fallen away in the last couple of months (I started when I got pregnant with Katheryn).
I love history and geneology.
I have all kinds of files and census's and certificates and can go back to about 1839 for some of my family, longer for Kyle's. There is a whole gedcom file online somewhere with my thousands of geneology connections (the farthest relative I could find was a 10th cousin)
I used to have maps and charts all over my bedroom walls.

4. Name one thing about yourself that has surprised you.
I like to speak in public.
I look for opportunities to do public speaking.

5. How did your blog come about?
When we got the diagnosis that Nickolas was going to be born with spina bifida, the medical professionals were so very negative, but the actual spina bifida community was very positive.
Actually seeing what spina bifida looks like... what our life could look like... had a great impact on how we felt about the diagnosis.
I wanted to share our story to help families like us, but also to connect with the whole spina bifida blogging community - and keep family updated in the meantime!

6. If money were no issue, I'd purchase...
A housekeeper.
A dirty house drives me C-R-A-Z-Y! And every time I turn around there is more in my house that is dirty. Someone to clean my house would be wonderful. (And we'll work to make the money for our fun vacations in the meantime)

I would be very interested to see how 2 of my blogging cousins would answer...
So Jim... Rob....
And Amberly because she is newer to the blogging world and it's fun.

That's my boo boo?

We were going around the house and looking at pictures today and Nick stopped at this one

He said, that's Katheryn, and that's me. Is that the boo boo on my back?
And it was like he just realized. Because of course he can't see his back so he has no idea what it looks like. Other than this abstract idea that there was a boo boo there.

Why is it there mommy?

We've talked about it before, and I'm sure we will talk about it again.

Me: Nick, when you were born you had a hole on your back. And that doctors fixed it and left this scar
Nick: Yes and that's my boo boo
Me: That is the scar from your boo boo. It is all fixed now.
Nick: And that is my scar. When will it go away?
Me: Well, it won't go away. It will always be there.
Nick: OK. When I was in the hospital you are Katheryn were there?

Why was I in the hospital?
Was I a baby?
Was Katheryn there?

When he was asking questions, Katheryn piped in.
Because you had a hole in your back when you were born.

I'm glad he's asking questions.
Just hope I'm answering them right!

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!

Questions

Am I doing enough?
Is there more I can do?
Why can't he do this, or that or something else that I see other babies with spina bifida doing, who are at similar levels.
Should I try to get him more equipment?
Does he need more equipment?
What are we supposed to be doing with physio again?
Is that enough? Too hard? Too easy?

Will he ever do this? do that?
Why can't he do it now?!

Am I babying him?
How should I push him harder?
Am I missing something?
Should he be doing that?

Are we reading enough?
Are we playing enough?
Is he sitting too much?
Has he crawled enough today?
Is he getting enough stimulation? Is he crying because he got too much?
Should we go out more?
Are we sleeping enough? Too much?
Is he eating/drinking enough?
Did he get all his fruit/vegetables/grains?
Did he get all his meds?
When did I cath him last?
What was his poop like?

Why isn't he talking?
Should I be doing something more?
Just say mama or dada or doggy! Please.
Do I talk enough with him?
Should I have gotten him an assessment sooner? (we go Feb 1)
Should I get more therapy?

And that is just all about Nick! I'm not even going to get into Katheryn or me or Kyle or finances or cleaning the house, cooking dinner, laundry, exercise, diet or when was the last time I went out with friends, or with Kyle. And poor Sammie (our dog)!

I guess what I should really be asking is:

Is he happy?

Is he loved?

Are we all?

Well, case closed. (for now)