A Gold Star Day!

We are in the middle of our new physio block and Nickolas continues to show off his stuff! I'm not sure how I like this block stuff. What if he's still doing great work and oops, too bad - we're at the end of the block... See you in a couple of months!

He is starting to do circles on his belly. He'll go all the way around - no forward or backwards - but he's using his arms to move himself!

Yay!

Let's see what else is Nick doing?

Oh yeah! If I put Nickolas onto his elbows and knees - he is staying there! Almost ready for crawling!!!

 How exciting is that!

And we got measured for our standing frame today. I'm not sure about the AFO's - I completely forgot to ask. Our physio was cut short today when Nickolas completely FREAKED OUT! Crying and screaming and refusing to do any work.
He was just really tired, and his teeth are bothering him, and we are trying to get him weaned, drinking milk from a sippy cup. And all of this on top of trying to get him to work, by showing him toys, making him work for them, and then taking them away!
I can kinda understand why he's so upset.

So he gets tired and upset and things are bothering him. But we are progressing well.

So today Nickolas is getting a big gold star! Way to go for working so well even though it was a tough day for such a little guy!

Another gold star goes to his sister - who is riding her bike a bit, and likes putting on her helmet (so she can be safe).

She doesn't get the peddling that much, but is working on it. But I can push her, with her feet on the peddles and she has a blast!

Meterstone Monday

There are milestones and there are meterstones. Not quite a mile, but still moving forward, one meter at a time.
So here are some of our meterstones:

Sitting

sitting up straighter

sitting unassisted for extended periods of time

lifting arms up when sitting

reaching to side and turning upper body when sitting

Rolling
reaching to sides when on belly
lifting arms when on belly
superman flying pose
brings knees up/side when on belly
reaches up when on belly
moves in a half circle (both sides) when on belly


Puts some weight on feet when supported


throws toys

pulls off socks

picks up cheerios

pulls hair

waves

does high five

laughing, giggling

blowing raspberries

will make noises back and forth - 'conversation'

Will sometimes understand no

Has 4 teeth!

Has a schedule

Eats crackers, toast, noodles and anything he can find on the ground

All of these are big things in our household!

So way to go Nickolas! for showing off your newest meterstones!

And his biggest supporter...

As a PS - If you love those hats as much as I do (thanks Jill for the site) check out http://www.petalbabies.com/
Katheryn is actually wearing Nick's hat - she kept taking his off and trying to put her purple one on him!

A gift of spina bifida

It is easy to focus on what I am missing by having a son with spina bifida. (This is a followup to my last post - A Moment of Grief) When talking about 'a different kind of perfect' I might think and imagine what I am missing, how things are worse now that we have spina bifida in our lives. Concentrate on the worry, the appointments, and the hardships.

But thanks to a friend, fellow mother and blogger Joanna for reminding me that there are things that I have gained by having spina bifida in my life. I have been given a gift. Yes, you read that right. It might seem that gift is a strong word to talk about our diagnosis, but it really isn't.

It has brought me the gift of celebrating each little milestone, to recognize the amazing capacity children are born with. It has shown me that my child is stronger than I could ever be. It has given me the gift to realize that some things in life are important, and some things are not.

Spina bifida has brought me clarity.
It reminds me of when I first got my glasses. I commented to my mother that Now I could see the leaves on the trees when we were driving. I never knew before that I couldn’t see the leaves; I didn't know I was missing anything. But now that I had seen I didn't want to go back to the blurriness.
Having a child with spina bifida has given me glasses that I never knew I needed. It has opened up a life for me that I don't want to give up.

It has given me the clarity, time and opportunity to enjoy and marvel at little things (even during physio). To be thankful for every movement, every laugh, every smile and to marvel at the love that I see and feel every day. We celebrate each exploration of our world. I have less moments of mundane and more moments to bask in the joy of my son's accomplishments.

It has given me a voice to ask questions and seek current research. It has made (ok maybe I'm not quite there yet), I should say, it is making me into an advocate. Confident that I am a strong mother who has good instincts.

It has given me the gift to realize the strength of my partnership. That we have been to the bottom of the pit and have risen higher than we realized that we could. That we are stronger now than before we knew what spina bifida was. I have been given the gift to realize that we are four individual pieces of a puzzle that produces a beautiful picture.

 

It has brought me a gift of a family of mothers and their children that understand exactly where I am and what I am thinking. It has given me children that I have followed and will follow being born, growing older, rolling, standing, walking and running. I have found a whole community of people who have been there, and share their experiences to help you when you feel alone.

Let me finally say that it has given me to opportunity to realize how wonderful, loving and caring my family is. Who read about my moment of grief and reached out to see how I was. To reinforce their love and confidence in my ability to be a mother of a son with spina bifida.

So today I celebrate the gift of spina bifida. That I have been given many little gifts with this diagnosis that I didn’t know that I needed, but that I am not willing to give up. I do have moments of grief and negativity but these are more than balanced by gifts of clarity and love, moments of joy, realization of faith and appreciation of my many blessings.

OK hand me a tissue.

A moment of grief

I caught a glimpse today. I tried not to, I tried to ignore it, but it still happened.

Nickolas, my happy and adorable child as a 10 month old, if at 28 days gestation his spine had closed. The glimpse came, out of the blue, when I was cathing him. We had just spent time outside playing, Katheryn was downstairs getting into who knows what. And the picture came.

Diaper changes without spina bifida, chasing a crawling infant, spending time relaxing and enjoying ourselves without appointments and forums and blogs, without scars and tubes and assistant devices. Yes the tears started flowing. Because if something had been different on that 28th day, then our life would have a completely different turn. I would still have my gorgeous and wonderful son, he would just be different, easier, more carefree; but he would still be Nickolas.

I wonder sometimes if parents of children with different diagnosis feel the same. Down syndrome, cystic fibrosis are genetic, something didn't happen during development they were created that way. So I feel guilty about what happened on that 28th day. Did I do something? Did I miss a pill? Drink too much tea? Have a hot bath or shower? Any of those things that they think might have caused that little bump in the road of development.

Of course I feel guilty even thinking these things. (And I love the forums and especially the blogs I read). And most days I truly believe that I am right where I am supposed to be. That things have worked out exactly how they are always supposed to be. I just didn't think that today, today I caught an image of something different, something that seems easier and more carefree.

I have a book called 'A Different Kind of Perfect' that has stories of parents of children with special needs. One of the chapters deals with grief. Grieving the child that you imagined when you found out you were pregnant.  I guess that this is left over grief. I wonder if it will ever go away, or if it will just fade into the background as I come to terms with our life. I actually had thought I'd come to terms with everything.

But while today brought a surprise need to reach for the tissues, I know that tomorrow I will once again bask in the joys of being the mother of two of the best children in the world! Just the way they are.

Sandbox Fun!

To enjoy the last full day of summer, we went outside and played in the sandbox. This was Nick's first time in the sandbox actually playing with Katheryn. He is sitting much better independently so I can leave him to play without holding him.

He liked outside the box much better than inside, and reaching in the play with the sand. And Katheryn really liked covering him with sand. I found a bunch in his ear! I had to make extra sure that there wasn't any sand left in between his toes.

But I think they had fun!