Happy Family Day!

Nick decided to show off after dinner today!

Instead of putting him in his standing frame I decided to try something different.

So I set him up beside the couch, put his AFOs and shoes on, supported his ankles and hips and bum and let him play.

I wasn't quite sure what he would do.

But he did it! He pulled himself up and stood there! It took me a couple of tries to see if I could let go. But I finally did, to see what he could do... and TADA!!! That is ALL NICK! Mommy strings are cut!

He was so happy with himself! Of course I yelled for Kyle and he grabbed the camera! He kept doing it over and over again, standing for about 20 seconds and then would sit back down. Then up again!

This is all from a little boy who was so sick and stuffy and leaking and feeling awful this morning! What would he be doing if he was in top form the last couple of weeks!

In Canada/Ontario today is Family Day. A holiday to enjoy with your family. The day did not go at all as I had planned because everyone was too sick to go out.

I think I'll say it went SO MUCH BETTER!



Ugg! Sick!!

Watching your children when they are sick is horrible. Especially when there isn't anything you can do. You know they feel lousy - you can see it in their face. Can't breathe, not hungry, fever. Just not interested in anything. But still trying really hard to still be happy!

Katheryn had it last weekend. Snotty and coughing, not sleeping through the night. Fever off and on for a couple of days. But still active on and off too. Then she got this lump on her neck! To say I freaked out would be an understatement. But after Kyle calmed me down and we decided it was not worth a trip to the ER, Katheryn continued to be active and we got in to see the doctor Monday morning.

Googling in this case was actually a good thing. Most cases of a lump on the neck in children under 10 years old is a swollen lymph node secondary to another infection (ear, throat ect).

A prescription for antibiotics later, and a fight for 2 days to get Katheyrn to actually taken them. And we got ourselves a whole new girl!

Talking up a storm and running around the house. She actually has so much energy that she would be racing around and stop and talk to me, and continued to run on the spot! I haven't seen her like this in months!

Nick on the other hand is being hit by a cold now.

He still has a smile for the camera, so at first you can't see how lousy he feels.

Then you notice how he just sits there with his mouth open - because he is so stuffed up.

And the constant leaking and...

OK well everyone knows the symptoms of a cold. Everyone knows how lousy THEY feel when they have this. But now I'm watching it in one or the other child and all I have is hot steam and tylenol at my disposal. And food and fluids. And rest.

Hopefully we are on the mend now. I haven't seen so much snot is a long time!

And I am really glad that I stocked up on a 6 pack of kleenex boxes last month! (I think we have 1 left)

I've been worried off and on about Nick. Is he getting enough fluid, is he dehydrated? How is his shunt? His bladder? Do inflamed sinuses put pressure on the shunt or increase ventricles? (Never heard of it, but there is always a first time). How long is too long to be sick?

Is there ANYTHING I can do to make him feel better?

And should i still make him do physio? Or is cuddling better?

I can see how harder he has to work to do things. He's not sitting as straight, he's supporting himself more. All he wants to do is be held and supported (like in his highchair). It's taking him longer to eat his breakfast.

Can we please just get over this cold!

Through all this, the not breathing, feeling lousy, snotty and generally feeling swollen and tired and grumpy. He still hams it up for the camera!

I know it will pass. But it feels like we just did this (in December).

Is it springtime yet?!

Someone you Love

Everyone has someone they love, and someone who loves them back. I bet you can list off, more than one, more than six, people that you love and love you back.

Take a moment to imagine if you didn’t have anyone who loves you. Take a moment to imagine if you were not surrounded by family and friends.

Take a moment to imagine what it would be like to be a 4 year old boy, living in an orphanage, without a family all because you were born with spina bifida and hydrocephalus. And in weeks or months you were facing being moved to an ADULT mental institution, because you were born with spina bifida and hydrocephalus. Because your forever family was waiting in the US to adopt you, but today you are in your orphanage in the Ukraine.

Now imagine YOU could do something about this. Imagine helping to donate the funds needed for this international adoption (which is expensive) to get Shea home to a family that loves him. YOU can help. In just 3 months (since Joanna found him) over $6,000 has been raised, but almost $8,000 is needed, and time is running out for Shea.

So if you can think of people that you love and love you back please, PLEASE take a moment to SHARE LOVE, Share Love with Shea.

Click on the ChipIn to donate. It is simple and easy and safe. (I’ve done it myself). Just a couple of dollars and a couple of minutes helps Shea get home to his family just a little faster.

This was really meant just to be a comment on Facebook - but it just got away from me.

Shea is so close to getting home! So close to being surrounded by family who loves him, even if he has spina bifida and hydrocephalus. Spina Bifida and hydrocephalus should not be a death sentence, it should not mean a lifetime in a mental institution, it should not mean having no one to love.

You can follow Shea's journey at http://savingshea.blogspot.com/ (If you aren't already).

(Shea is a boy even though he's often dressed in pink!)

I can't even imagine if my Nickolas was born at a different time, or to a different family, in a different country how his life would not be apprecited, how he wouldn't know love and family and laughter and know that he'll be kissed when he goes to sleep at night, and when he wakes up in the morning. All because of what he was born with, all because of spina bifida and hydrocephalus.

If Nickolas was born overseas, in this country would he be crawling around the floor laughing when he finds a bit of dog hair, then looking up to his mommy to show off his find, before quickly shoving it in his mouth as I decide if it's just extra fibre or if I should really pry his jaws open and take away his prize....

It's Back...

That feeling. You know the one. Where things are just right. You smile a little wider, you stand a little taller and you see the world a little brighter.

I'm not really sure why this feeling appeared. I didn't quite know that it was gone, but with the stress of the shunt, the continuous snotty noses and coughs, not sleeping and always having a messy house got the best of me for a good 6 weeks or so. But not today.

Today things are good, things are happy.

We had a very good physio appointment. Probably the major impact on my mood. I was feeling so lost about physio, about development, about where we were. I felt that we weren't moving forward but just stuck. And today I got to see the most amazing thing.


I got to see my baby boy on his feet, hands out, feet moving - towards me. Kim (the PT at Bloorview) was walking behind him, holding his chest and helping his feet move. BUT there he was. Something he was not able to do before the standing frame, gaining strength and getting a new angle on the world!
 [Of course I never thought to bring my camera]

But that's not all. Nick is ready to show off his new tricks!

Nick has started to fully feed himself! For a while we've been able to put finger food down for him, and he'll pick things up and put them in his mouth. But he just couldn't get his head (actually his mouth) around the idea of the spoon in his hand. But as you can see, he's got it!

He even took my spoon so he could do it all himself!

What a big boy!

 

We've been trying to get ideas of stuff he can do when he's standing. We've graduated up to 1 hour, twice a day. And he wants to grab more stuff. His FAVORITE thing to do is put everything in a basket. Doesn't matter what it is - it goes in the basket. Which is great when we are trying to clean up.

And he's piling blocks together and putting rings on a stick (or whatever that plastic thing is). Nick is hilarious - he does all this stuff and then clasps his hands together and is sooo proud of himself. Then looks at you for the appropriate appreciation of his work.

Another thing that Nick is busy showing off...

His whine. Moooommmmmy, it's tooooo far, I caaaan't reach iiiiit. Muuuuuummmmmmmy, can you pass me that cracker, pleeeeaaaase. (Paraphrasing of course).

I'm taking this new stage as a developmental thing. He realizes that he can impact my actions, and if he sits and 'looks pretty' or at least 'looks pretty pathetic' I'll get him whatever he wants.

OK I will admit that I tend to get things for him. But now that I realize he is doing this (I wonder how long  he has been doing this), it is time for him to get down to work!

AND I saved the best for last!

The 'walking' was pretty great, but this is all Nick. This is Nick doing all the work and just using mommy as a little support and encouragement. (Call it the mommy-crutch). Are you ready?

  

Did you see it?

He's standing! He's pulling himself up on me - but that is weight on those legs of his!

And not only is he doing it once - but over and over again! So that I was able to take a bunch of pictures while trying to hold the camera steady and get the gist of what was doing on.

And we start physio again in a couple of week, we have our workshop for speech therapy over the next month, we got all checked out from neurosurgery.

Nick is happy and healthy and things are going great. Katheryn is really talking up a storm. I am taking control of some aspects of myself that I've been effectively ignoring for the last couple of years (read: weight). And Kyle and I are on the same page for so many things lately. So that feeling that things are right in the world, it's back!

Talking about speech therapy

Speech Therapy means another therapy to add to the appointments and stuff that Nick is doing. But this is good, and it's not so much about Nickolas, right now it's mom and dad classes and a play group where we get to practice!

We had our speech assessment the beginning of the month, Nick remained completely silent through the whole thing! But he is starting to chatter a little bit. Just no actual words yet. But I think that mama and dada are going to come soon. He is making those sounds when he is really angry and babbling in his crib at night.
I asked, but it doesn't count.

I even caught Katheryn trying to get Nick to talk. I could hear her yelling in the van the other day. When I opened up the door she is saying to Nick - "Say Daddy, Say DADDY! DADDY" He of course just smiled and laughed at her.
Dadda is his favorite sounding word to say. In the middle of the night when he wakes up and is very upset that he is awake it is dadadadada that he's saying in his VERY unhappy voice! But I don't actually think he is calling us - yet.

I made sure to ask for a copy of his assessment when we left - something that I have to keep reminding myself! (So that I have records for everything, instead of them being all over the place).
I received it this year.
Pretty much what we expected.
I really, really hate hearing that he is delayed in everything. But like mobility, language is pretty obvious and it's obvious that by 15 months (wow - are we there already!) he should have a word or 2.
So bad news is that he is severely delayed in his expressive language (using language) - well duh! He has no words. But in reading the report it said that he is showing some 'scattered communication skills' in the 12-15 month range. So that is good.

That's another reason why getting the report is helpful, I can go back and read this stuff instead of just remember that she said something about some talking stuff, but I can't remember. And the words severely delayed just repeating over and over. Because he is showing improvement - that's all I ask.

But his other stuff - his understanding and pre-language is there and in the appropriate range. So he understands what we say, what we want him to do ect.

Have I mentioned that I hate these assessments. They make me feel so dumb.

When I'm asked a really simple question like 'does he point to action words in books?' What?! I have no idea. Oops, he's supposed to be doing that?

But we have a plan. Kyle and I have some workshops to go to this month. We have a parent session where we learn all kinds of different things to do, and the a couple of parent and baby sessions where we practice. And reassess in 4-6 months.

A plan is good. Lets us feel like we are doing something.

I got a picture book for Nick to look through - full of HIM! He seems to be enjoying it!

This is just the first of what is Nick doing posts - more to come - I promise!