Hiiiiiiiii-ya

Anyone that knows Lucas knows that he is a little crazy.  Today he did not disappoint and gave me crazy. I decided that it was about time that I got outside and raked up all our leaves, I didn't want them stuck under snowbanks like they were last year.  I did one side and left a huge pile for Lucas to discover when he came home from the library with his Papa.  Well, his eyes lit up and he went for it.  He figured this was as good a time as any to perfect his ninja/karate moves and he had a blast. 

He wanted me to photograph him.  I nearly dropped the camera from shock!  But what could I do but oblige :)

Of course he decided that he had to give me a couple shots where he was a dead body in the leaves, I mean, how would it be fun without that?

Back to crazy......

Aren't boys awesome???!!!

Sophie was not too sure about the leaves at first.  They were cold, wet and scratchy, but still kind of fun.  She's a roll with the punches kind of girl, so she tolerated me taking some pictures of her.  I don't know how, but I think she is more beautiful today then yesterday.

Tonight is Halloween and we are really excited to head out trick or treating.  Lucas and I had some negotiations about his costume this year, he thinks he is 15 and can wear horror movie-esque stuff.  Me, not so much.  So we compromised and I think it will be great.  Sophie will hopefully tolerate her costume, we will see in a few hours.

Happy Halloween!

All Wiggled Out

What a night!  We wiggled, and wiggled and wiggled some more! 

Sophie had a wonderful time at the Wiggles concert last night.  She didn't smile but she was so focused on them up on stage it was scary.  I tried to turn her stroller a few times to get a picture of her with them behind her, and she would crank her head around to try to keep seeing them.  The family beside us thought it was pretty hilarious and I have to admit it was really cute.

 This was during twinkle, twinkle.

Anthony waving to Sophie

 Sophie was very spoiled and got to meet Murray and then a little bit later Anthony came over to us.  They both came to her and asked her name and if she was enjoying the show and said that they were so glad she was there to have fun with them.  She just stared at them with her big Sophie eyes in complete amazement that they were right there in front of her.  They are really awesome children's entertainers and you can tell that they love what they do and care about their fans.

Last year Sophie cried from the moment we got out of the car to the moment they started the show.  This year she was totally happy until we had to leave.  She bawled the whole way home, she was not done with the Wiggles it would seem, and wanted them back. 

Unfortunately, we ended the evening with a bang and she did have a 5-6 minute seizure later in the evening.  It was just too much excitement for her, but I don't regret taking her.  She had a blast and that has to trump everything else.  She was not aware through most of the seizure and I am hoping she has no recollection of it.  We can't wait to see the Wiggles again next year.  Keep on wigglin'!!!!

Watch out Wiggles....

Your number 1 fan is on the way...

Tomorrow night we will be seeing the Wiggles in concert and Sophie will be freaking out.  She loves the Wiggles more than anything else and we will be in the front row cheering them on.  We saw the Wiggles last year and Sophie cried the whole way there.  All the pictures I have of her outside the stadium are of her bawling her little eyes out.  That continued inside for the next half hour or more while we waited for the show to start.  It didn't stop until the Wiggles came out on stage, and she was intrigued.  Thus started a Sophie addiction like no other.  She had no idea who they were before the concert last year, she may have seen them on tv a few times but that was about it.  Now we have multiple dvd's and pvr'd episodes to the moon and back.  If you ask her if she would like to watch the Wiggles she is all smiles and waits for you to put it on.  I can't wait to take her tomorrow and see her reaction when she realizes they are right there in front of her, her beloved Wiggles.

Here are some pictures from last year...

A Collapsed World.....Again

Today is the one year anniversary of Sophie's first seizure.  It was at 7am on October 23, 2009.  I was woken to words that I still hear in my head more often than I would like to admit, "Rebecca, Sophie's having a seizure."  I have never jumped out of bed so fast in my life to run to my Miss Sophie.  And there she was, having a full on tonic-clonic (grand mal) seizure.  By the time the ambulance came it was almost 20 minutes from when her seizure had started.  The most agonizing 20 minutes of my life, we had called them back asking where they were, why weren't they HERE?  They arrived soon after with all their gear and came up the stairs to see my girlie still seizing.  They took one look, scooped her up and ran with her to the ambulance.  I can still see it happening as if it was going on in front of me right now.  Those ambulance attendants were my heroes.  I rode with her, holding her hand, holding on her oxygen mask, seizing all the way to the hospital.  They were giving her med after med, and the paramedic was on the floor of the ambulance, legs braced to each side, trying to get an iv in her tiny little arm. They decided right away not to take her to Children's Hospital because it would take too long to get there.  It was a choice that would save her life because she stopped breathing shortly after we arrived at hospital and they couldn't get her intubated.  I watched her O2 sats fall to 16, she was grey and I was terrified.
 They bagged her for what seemed like a long time and worked and worked and finally got her intubated.  Those ambulance attendants stayed with us for hours while the dr.'s worked on her to get her seizure stopped and get her breathing.  They waited until she was ready and took us to Children's with the transport team that had arrived to escort her there.
Her seizure had lasted about an hour and 15 minutes (not her longest to date), she was intubated and in critical condition.  We were finally able to wean her off some oxygen after a couple days because she was attempting to breathe on her own, she was extubated after 3 days and in an oxygen tent.

How did we get to this place?  How could her world be thrown into such mayhem when her birth seemed like the worst it could get?  This last year has been so difficult for her,  I really don't know how something so little can go through so much.  But that is Sophie.  She amazes us every. single. day. 
Have you ever had days that were the worst day of your life, but the luckiest as well?  I have had 2 of those now.  The day Sophie was born the ambulance attendants decided to take me to St.Joe's (which we lived 2 blocks from). That would normally never happen in an emergency.  I was told later I would not have survived the trip to the new Vic. (a hospital with an ER)  because I had lost so much blood.  There was a long chain of events that followed that was so out of the ordinary, but made it so that Sophie and I are here today.
The same happened with Sophie's seizure. It is not protocol to take 3 1/2 year olds to anywhere other than Children's by ambulance.  But they made a judgement call and it was what kept her here with us.  The ER dr's had this little cheater board that they laid beside her body, it told them all they needed to know, doses and weights etc. for a child.  They said they rarely work on children in emergencies, but they were so amazing, I had trouble believing it ;)

Sophie has had many more ambulance rides, 7 to be exact, since that first one 1 year ago today.  She goes into status epilepticus for many of her seizures which means that they go on for a long time and she does not come out of them by herself.   We are now finally getting her seizures more under control, we have not had an ambulance ride since April and I would like to keep it that way.  Her seizures are now shorter and we are able to deal with them at home if she doesn't require oxygen.  My dream is for them to be gone. Period.  I hope one day we will see that dream realized.

Clinic, finally

We had an appointment today for Sophie at the Cerebral Palsy Clinic.  We have waited 2 1/2 years for this appointment.  I know, crazy.  The Dr. that oversees it used to be Sophie's developmental paed, and is again now that we are officially in the clinic rotation.  We really like this Dr. and value her input immensely. 

So we learned alot today.  And Sophie was a star, she sat there quite happily for 2 hours and 15 minutes while we talked.  The most exciting news was that the Dr. felt that Sophie should attend school next year, she will be going into SK!  She also wants her in an integrated classroom, not a developmental class.  This is also what her neurologist suggested 2 years ago when we were starting to think about JK.  We totally agree with them, Sophie is sooo smart and really thrives off the socialization and interaction of the kids at daycare around her.  We all feel that if she was in a developmental class with other kids who are non-verbal and are non-ambulatory who can not easily approach her (kids just like her) that she will not learn and grow in that setting.  She nees the interaction.  Her physical and medical needs will need to be met as well but we will make sure that it is all covered.  I don't exactly melt into the background when it comes to her care ;)  So we have lots to plan, like choosing a school, in the next couple of months.

We were told that Sophie will not sit up unassisted or talk.  I wasn't shocked but I still teared up.  Jason says that she will talk and I tend to agree.  The Dr. said that she will definitely communicate using some type of augmentative communication because she is very smart, we just have to find the right tool.  We will continue to let Sophie take the lead and show us what she can do.  We won't rule out anything and we will do our best to help her reach her potential.

And how I know she can do it.....

This is a picture of Sophie at 19 days old just after she was extubated.  We were told by the Dr's she would not survive extubation, at the very least not without a trach. Hmpph!  The nurses told us that they believed in her.  And so did we.

These are pictures of Sophie after she rolled over on her own at 4 1/2 months.  She was so exhausted she fell right to sleep!  We were told she would not do anything.

We also found out that her seizures will probably stay stable for a while and then become completely uncontrolled at puberty, around 9 years old.  We know puberty wreaks havoc on the lives of many kids like Sophie so that was not a great thing to add to the pile.  She is only on 2 seizure meds now so we can add alot more (some kids are on 7 or more seizure drugs at a time).
Sophie is going through a big growth spurt (possibly seizure med induced) and is now 40 pounds!  She has also grown 2 inches in height since July!!!  Her height is in the 80th percentile and weight is the 75th percentile on the CP growth charts.  Sure beats the 10th-25th where she has been for weight for most of her life!  We talked about lots more but those are the biggies.  We will see them again at clinic in another year or so and see how things have changed!
We are coming up to the one year anniversary of Sophie's 1st seizure.  Not an anniversary I ever wanted to be celebrating.  But Miss Sophie has come a long way and she is so strong and feisty and we have learned how amazing she is over and over again.

Closing Time

Lucas and I headed up to my MIL's cottage this weekend to help her close it up for the winter.  Not my favourite trip only because it means we have to wait six months for another visit there!  We were really spoiled this year and made it to the cottage alot.  We had one of our nurses from home come up for 2 trips, and we had 2 new night nurses from the community close to the cottage come for 2 of our trips.  They were super nice and we are hoping that we will be able to have them help at night there again next year.  We are very dependant on night nursing for Sophie.  Especially when we are away on holiday in a small cottage.  If I stay up all night with her then it is hard for me to get any sleep in the morning because of the noise.  So we were very lucky that we were able to get so many trips - one of them for 10 days! 
Sophie is tube fed and she eats through the night because she can't consume enough calories through the day and also gets many of her meds in the night.  She usually needs chest physio in the night and we never leave her alone because of her seizures. Sophie often goes into status epilepticus which means she has seizures that are long and don't stop without intervention.  They are very dangerous seizures which can be fatal if not stopped or at the very least can cause more brain injury.  Her longest seizure so far was almost 2 hours, after having 3 kinds of rescue meds.  So she has to be watched and cared for all night.
Sophie and Lucas just love the cottage, as do we, and it was a great season this year.  So many sunny, warm days. 
While we were at the cottage this weekend we went to a farmer's market and found some pumpkins and gourds.  They have the neatest coloured pumpkins, I especially like the blue/grey ones.  Lucas was in a very happy mood so even though he ducked out of alot of photos I managed to get a few.

We followed these paw prints up the beach for quite a while.  It is hard to tell here but it was the size of my palm.  We still don't know if it was a bear print or just a big dog, but man it was big.  We did have a bear at our cottage this year and last, so you never know.

Sophie was so happy to have us home, she has been smiling non stop.  Lucas had a fun time and I enjoy being able to spend time with him on special trips like this one.  We try to keep it equal, but Sophie takes alot of our attention.  It's just the way it is.

Now we can look forward to Hallowe'en and all the fun that brings!

Thanks For Giving

Lucas comes up with the best little sayings.  I think all parents have a few little phrases that their kids said at some point that just sticks with you because it was just so cute or funny or maybe inapropriate - aren't those the best ;)

When Lucas was about 15 months at his 2nd Thanksgiving, we were all at the dinner table at my mom and dad's and we said to Lucas "say Happy Thanksgiving!"  Well he said in the cutest little voice "thanks for giving!"   We all started laughing and it was just about the cutest thing I had ever heard.  Jump forward 6 years and I still remember it like it was just yesterday that he uttered those words. 

We had a wonderful Thanksgiving dinner at Jason's mom's house and we all pigged out and loved being around 3 beautiful little one's.  Our nephew Ben had his first Thanksgiving this weekend and he just had a ball being there watching everyone, as did Sophie. 

I love this picture.  Sophie adores Lucas and it just shines through in this picture.  She was eating up being able to sit beside him like this.  Lucas is now the big kid, just like my Godson Zach used to be with Lucas sitting on his lap.

My mom and dad have been away for three weeks in Europe and they made it back just in time for this weekend.  We all went to Springbank yesterday and we tried to get some pictures of us with all the trees by the river.

 I totally lucked out with this picture because the one below is what I ususally get.

But what can you do, that is Lucas.  Or Lucasfer as we like to call this version of him ;)

Lucas learned that geese aren't always cute and friendly..

Big cousins are so cool

 My sister took one for the team and had the brutal task of holding Sophie up on the tree.  Sophie loved it.

Last night we decided to make some Thanksgiving cupcakes for today's dinner.  Lucas was all for it and I asked him if he thought Sophie might like to join us.  He told me that Sophie had to help, because she adds the magic.  Wow.  Can't get much better than that.

 And he was right.  Magic.

Sophie loved it and it was so much fun.  Lucas ditched us for football part way through but he came back to make the icing and add the sprinkles.  I think we did pretty well, and I noticed this morning that a few were missing, wonder how that happened?

And this is what it is all about.  That is the best turkey! Ever.

We are hosting my side of the family in our new house today.  Can't wait.

Happy Thanksgiving.  We have so much to be thankful for this year.