For all of those Dads who are such great role models!
Have a good and fun filled day playing with the kiddies!
Sunday, June 19, 2011
Thursday, June 16, 2011
Motoring Along!
I really think it is time for an update. I find that recently I've been writing about stuff without giving a proper update. So I spent the last couple of days taking pictures of all of the great and new things that Nickolas is doing.
We STILL have not been picked up again for Grandview physio. In the middle of May I called and talked to the head PT person and was told who our new PT would be. I called and talked to her, she said that we would start in June, we just couldn't schedule anything yet, we were waiting for one person to get back from vacation.Suddenly I turn around and it's practically the middle of June. Have we started at Grandview? Have I heard from Grandview? I called last week - she's on vacation. And I JUST heard back, we has an assessment June 24. (Picked up in May/June - don't make me laugh! Sorry is my bitterness showing?)
But that's ok, once we found out it would still be a couple of weeks in May, we got ourselves a private physio.
We are doing work, we have plans, we have progress. Nick is working hard and we are working hard with him! Katheryn especially is taking an interest in what he is doing!
And Nick LOVES showing off for us now!
He is rocking the lie to sit now! And he's doing great at kneeling!
Even no hand kneeling!
And this is just showing off!
He's actually started to do this all by himself now! We come into the room and there he is kneeling.
Nick isn't showing any interest in stepping. Except he likes playing in his car, and we caught him trying to make it move forward!
We went to visit my sister's new house and Nick LOVED the stairs! He didn't up them, but really liked to make mommy excited that he was trying!
I'm sure he's going to show off more great stuff this week, but I really wanted to get an update out there!
I'm sure he's going to show off more great stuff this week, but I really wanted to get an update out there!One thing though. We had his 18 month check up (yes at 19 months) and he hasn't gained any weight since January. He has a great appetite and eats like a horse! We are hoping that it is because he is much more active. But we'll go back for another weight check in the summer!
We have a plan, we are keeping the private physio through the summer. We are getting a move on and see what Nick can show off. I'm feeling good about it! But I'm ready to sit down and have a serious discussion about our plans and goals.
Hope I don't come off as the over-bearing, demanding mother. Wait a second, maybe I do!
Sunday, June 12, 2011
Just another trip to the zoo! 
I was really nice and actually surreal to visit with someone that you have been reading about for such a long time. And finally meet in person!
It's almost as if we can almost jump in the middle of a conversation, because we DO know each other. Blogs are very personal and you can learn alot about each other through blogging and commenting. But I've already discussed what belonging to our community means to me.
And it was great talking in the same language. Discussing our own goals and plans. Comparing scars - and yes our kids are going to hate us doing that (eventually).
There was more. There was accepting that our kids are wearing their braces, and that they are staying in their wagon/stroller or being carried, that we make time to make sure they are out of their seat for time too.
And of course there is nothing like seeing that bright smile and shiny eyes in person!
Katheryn made some new friends too. After a bit of warm up time.
But soon the girls were building sand castles, and running around and comparing little brothers!
Nickolas and Kingsley are about 2 months apart, and Katheryn and Cordelia are about 2 months apart. Jill just has an extra kid! So they played well together.
We saw lots of animals, enjoyed the weather and the outdoor air. No one got (too) lost, and there were some minor meltdowns, but I think everyone left on a high note. And slept well in the car!
Hoping this is just the first of many visits!
All of you SB Mommy's are invited!!!
Oh! But look who we ‘bumped’ into?! That little face looks familiar! We got to visit with our blogging SB mommy Jill and her rockstar Kingsley! (Oh and Jeff, Rachel and Cordelia)
I was really nice and actually surreal to visit with someone that you have been reading about for such a long time. And finally meet in person!
It's almost as if we can almost jump in the middle of a conversation, because we DO know each other. Blogs are very personal and you can learn alot about each other through blogging and commenting. But I've already discussed what belonging to our community means to me.
And it was great talking in the same language. Discussing our own goals and plans. Comparing scars - and yes our kids are going to hate us doing that (eventually).
There was more. There was accepting that our kids are wearing their braces, and that they are staying in their wagon/stroller or being carried, that we make time to make sure they are out of their seat for time too.
And of course there is nothing like seeing that bright smile and shiny eyes in person!
Katheryn made some new friends too. After a bit of warm up time.
But soon the girls were building sand castles, and running around and comparing little brothers!
Nickolas and Kingsley are about 2 months apart, and Katheryn and Cordelia are about 2 months apart. Jill just has an extra kid! So they played well together.
We saw lots of animals, enjoyed the weather and the outdoor air. No one got (too) lost, and there were some minor meltdowns, but I think everyone left on a high note. And slept well in the car!
Hoping this is just the first of many visits!
All of you SB Mommy's are invited!!!
Wednesday, June 8, 2011
Our community - part 2
I don't know if anyone remembers that I made a post about our community last year some time. It was long and talked about all of the great moms and families out there.
When there is some news that really hits our community it is great to be able to be a part of that. For example when the MOMS study came out, and when the Paul Reiser show started (with an actor with spina bifida), as well as spina bifida in different plot lines on TV. And of course there was Shea, our Shea - who just met his forever family (yay) and has officially been adopted! Shea Matthew Kulp!!!. A face, a mission and a miracle.
Yes this is a community of people where we share a diagnosis. But it goes beyond that. It goes beyond shared experiences, an understanding of exactly where you are right now. It's more than hopes and dreams and fears and nightmares and days where things go right and days where things are boring and nights are long.
There are many people that I refer to as friends. I have a friend who's child used this, or did that... Most recently it was, I have a friend who's son is going to be born with spina bifida. No, we hadn't met in person. We 'met' on the baby center forum, talked through there. Talked on facebook and BBM. Technology is amazing!
And then I found that I had something that I could offer. I've been in this game for almost 2 years, I may not be an expert, but I am a mother, and that is as close as you get to excellence! I am also a labour and delivery nurse and come from that knowledge background as well.
So I offered myself to this member of our community, who I had never actually met before, but really felt I knew. I offered to be part of her support in labour, to be there for the birth or however I could help.
I was very excited when she said yes. It was almost as if I could give back to everyone who had helped me. Or to Pay it Forward. Alot of time we feel powerless, but this time I was able to have some power, support and knowledge.
I have to say that the waiting room is a horrible place to wait! But it is worth it! I am not going to post any pictures or information - I'll leave it to Shayna to brag about her son (and how great they are all doing). I was able to be there and ask questions and offer support and the knowledge of my own experiences. Almost like a What to Expect, When Expecting a Baby with Spina Bifida.
And I had alot of fun doing it!
With my amazing experience I wanted to just talk about our community again. How much it means to me, and how proud I am to be a part of it.
People in my life have heard me talk about our community. Different moms and who is doing what. Sometimes I wonder about mom's who don't have access or knowledge that there is a community out there. Moms who aren't online. I would love to connect with more and more moms. In person, online - I love it!
I'm trying to get a mom and baby group with some moms that live in my area (we have 3) and I'm always wondering how to let people know that I'm here, I'm waiting to meet you! And I'm not the only one!
Just last month another of my spina bifida mommy's (because I've called rights for all of you!) Jill posted something very similar.
How to connect, how to grow our community?
I don't have an answer. Except to be out there, be visible, be verbal, be brave.
I have a bumper sticker on my car - I love it! It reads Someone with Spina Bifida Makes Me Proud, Everyday.
I've also recently connected with another mom who just got a lipomeningocele diagnosis for her baby girl. She was referred to me by a family member who knows how involved I am in all of this. I was glad I was able to offer some support and some good websites. I remember how dark those days were just after finding out!
Our mom and baby group has wound down for the summertime. Which is really lousy because I look forward to connecting at those monthly meetings! But we've all exchanged infomation, and will hopefully be able to organize some things in the summer.
I have some brainstorming ideas of how to make our Ontario community closer. When I have the time and energy I will hopefully pursue some of these ideas. Meetings? Baby groups? Zoo trips or visits? Connecting with out-of-towners? Local Rehab Center, Local SBHAO chapter? Not sure what my steps should be.
But - exciting for us!! We are going to be able to get together with Jill and her family this weekend. We get to meeting little Kingsley! (Yes you can all be jealous).
It's really nice to sometimes be part of something bigger, and know that you are never alone!
When there is some news that really hits our community it is great to be able to be a part of that. For example when the MOMS study came out, and when the Paul Reiser show started (with an actor with spina bifida), as well as spina bifida in different plot lines on TV. And of course there was Shea, our Shea - who just met his forever family (yay) and has officially been adopted! Shea Matthew Kulp!!!. A face, a mission and a miracle.
Yes this is a community of people where we share a diagnosis. But it goes beyond that. It goes beyond shared experiences, an understanding of exactly where you are right now. It's more than hopes and dreams and fears and nightmares and days where things go right and days where things are boring and nights are long.
There are many people that I refer to as friends. I have a friend who's child used this, or did that... Most recently it was, I have a friend who's son is going to be born with spina bifida. No, we hadn't met in person. We 'met' on the baby center forum, talked through there. Talked on facebook and BBM. Technology is amazing!
And then I found that I had something that I could offer. I've been in this game for almost 2 years, I may not be an expert, but I am a mother, and that is as close as you get to excellence! I am also a labour and delivery nurse and come from that knowledge background as well.
So I offered myself to this member of our community, who I had never actually met before, but really felt I knew. I offered to be part of her support in labour, to be there for the birth or however I could help.
I was very excited when she said yes. It was almost as if I could give back to everyone who had helped me. Or to Pay it Forward. Alot of time we feel powerless, but this time I was able to have some power, support and knowledge.
I have to say that the waiting room is a horrible place to wait! But it is worth it! I am not going to post any pictures or information - I'll leave it to Shayna to brag about her son (and how great they are all doing). I was able to be there and ask questions and offer support and the knowledge of my own experiences. Almost like a What to Expect, When Expecting a Baby with Spina Bifida.
And I had alot of fun doing it!
With my amazing experience I wanted to just talk about our community again. How much it means to me, and how proud I am to be a part of it.
I'm trying to get a mom and baby group with some moms that live in my area (we have 3) and I'm always wondering how to let people know that I'm here, I'm waiting to meet you! And I'm not the only one!
Just last month another of my spina bifida mommy's (because I've called rights for all of you!) Jill posted something very similar.
How to connect, how to grow our community?
I don't have an answer. Except to be out there, be visible, be verbal, be brave.
I have a bumper sticker on my car - I love it! It reads Someone with Spina Bifida Makes Me Proud, Everyday.
I've also recently connected with another mom who just got a lipomeningocele diagnosis for her baby girl. She was referred to me by a family member who knows how involved I am in all of this. I was glad I was able to offer some support and some good websites. I remember how dark those days were just after finding out!
Our mom and baby group has wound down for the summertime. Which is really lousy because I look forward to connecting at those monthly meetings! But we've all exchanged infomation, and will hopefully be able to organize some things in the summer.
I have some brainstorming ideas of how to make our Ontario community closer. When I have the time and energy I will hopefully pursue some of these ideas. Meetings? Baby groups? Zoo trips or visits? Connecting with out-of-towners? Local Rehab Center, Local SBHAO chapter? Not sure what my steps should be.
But - exciting for us!! We are going to be able to get together with Jill and her family this weekend. We get to meeting little Kingsley! (Yes you can all be jealous).
It's really nice to sometimes be part of something bigger, and know that you are never alone!
I'm really sorry if this post doesn't flow very well - I actually started it 3 weeks ago, and just hadn't 'polished' it enough. But I still wanted it done and posted. So here you go!
Sunday, June 5, 2011
I will! I will! I promise!!!!
Lots to catch up on!
Because this shirt is so cool, I have to share that I got it from CafePress.com (I got myself one that says 'I'm totally going to blog about this'. Thanks to Karin - who had a picture of herself with a similar t-shirt and inspired me!
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