Catching a wave

Not talking about surfing here :)  Sophie had an EEG today.  Her neurologists are keen on finding out if Sophie is having more seizures than we think.  Both of Sophie's vision specialists think that some of the eye movements Sophie has could be seizures, so the EEG will tell us a snapshot of what Sophie's brain is doing.  Unfortunately EEG's are just that, a snapshot of what is happening for that 20 minutes and nothing more.  But it can be helpful to at least see a baseline of background activity.  Sophie hasn't had an EEG since one of her very bad status seizures almost 2 years ago, so it was definitely time to have one done.

This adorable little cupcake is Sophie during her first EEG, well the first that I was at anyway.  I assume she had some during her first week of life before I met her, but I don't really know for sure.  Sophie had still not been home at this point, she was about 2 1/2 months old here.  That was also the day she got her g-tube put in.  The room we were in that day was right next door to where we were today and it brought back alot of memories from almost 6 years ago.  This photo of her has always been one of my absolute favourites and I don't even know why.  I think it just summed up alot of what we/she was going through at that time in one photograph and it was comforting to have it to remember by.

And here is my big girl today.  She was totally happy during the EEG but she was also very Sophie.  She wanted to see everything the technician was doing and unfortunately all the work was on top of her head so Sophie was wiggling to see.  Alot.  It took a very long time and lots of distraction by my singing to her but she finally got them all on in the right place and got her head wrapped to try to keep them in place.  I jokingly asked the tech if Sophie was the most difficult patient she has ever had to put them on and she said "Well......yes, I would say she was the most difficult ever."  She said it in a super sweet way and to be honest I wasn't completely surprised by the answer, my little monkey can be a handful. 

Sophie has very thick hair now and it was hard to keep it all separated while she moved around.  It is hard to tell in the photos but the probes are all over her entire head, not just at the front.

Sophie was a star during the EEG and sat on my lap quite happily, it was funny as she watched the technician like a hawk the whole time.  My girl doesn't like to miss a thing.  We should find out next week what the EEG showed.

Going low tech

A couple weeks ago we received a new low tech augmentative communication system for Sophie to try out.  It is a laminated group of pictures that are symbols representing different words.  They are then put on a velcro strip to allow Sophie to make choices or "talk" by using these symbols.  It's no secret that I have been frustrated in the past by some of our consult meetings about augmentative communication, but now the service is trying something new.  In the past they didn't see the child.  It was not an assessment, you just went and told them stuff and they decided what you should and shouldn't do from there.  Not exactly a great way initiate a form of communication for a child.  So now they are trialing home consults where they actually meet the child and make suggestions from what they see and learn during the visit. 

Here's the shocker ;)  Sophie was totally ready for an AAC system.  I know.  Who would have thought that.  I have only been telling them that for a few years. 

The woman that came to the house was great and really listened to what we said and interacted with Sophie and watched and made some excellent recommendations.  After another meeting or two we received a boardmaker system with symbols on a yellow background that was tailored for her vision needs by her CNIB specialist.

We have been using her Ipad for the last year and it will hopefully continue to be a way for Sophie to learn.  As of yet we don't have the perfect communication app for her, most are too advanced or require too much physical ability.  More and more are coming out in the App store every week, so eventually we will find just the right one.  In the meantime we will work at our low tech communication system and see what Sophie can do. 

A little bit of this..

We are dealing with some health issues with Sophie that are causing us some concern right now.  We ended up at Urgent care on the long weekend because of severe bruising on Sophie's limbs that is being caused by low platelet levels.  We have some decisions to make because we believe that it is a side effect of one of her seizure meds.  We are doing some more tests next week to see if the issue is worsening and then we have to decide what to do.  We have pretty good seizure control right now so we don't really want to mess with her cocktail if we don't have to.  But with that said, Sophie had 2 seizures yesterday and that is very rare.  It has only happened one time before so it is one more thing to think about.

We have been doing some fun things though and we are excited for birthdays next month and Easter not long after that, which means that spring is just around the corner. 

Lucas has been taking skating lessons this winter and he is gaining skills every week.  He is more confident on the ice and he is having fun.

He is also taking basketball lessons this winter and he is loving it.  He is pretty obsessed with it lately and I find myself playing basketball drills in our basement most nights with him.  I know that as we get closer to the spring his priority with turn back to soccer.  I love that he throws himself into each sport whole heartedly until it is time to try something new again.

Sophie is taking her swim lessons again at Making Waves and she is loving it, the water is warmer this time around so the experience has been nicer for her.  Her volunteer instructor is great and it is nice to see Sophie so independant in the water, she kicks and is of course ever interested in all the kids around her.

Before we headed down to Florida for our trip I was able to order some things online for Sophie that would have been too expensive to ship to Canada, or weren't available to order here and I had them sent to Jason's dad's house down there.  We have been having fun with some of Sophie's new toys...

One of the many things I bought was a light pad, I have lots of ideas in the works for this.  Sophie was quite intrigued by it the first time we used it.

One of the other items I bought was an Actitunnel.  Sophie has used this at therapy before and I am really glad I bought one for her.  We used it alot in Florida and I know that it is going to get a lot of use here.  I have added some light up toys and it keeps her very engaged in her play.  We have used little rooms in the past and this is a nice portable version of a little room that will grow with her nicely.

 

She has had lots of smiles each time we have used it, I think it will be a great piece of equipment for her to improve her hand eye co-ordination and of course it involves active learning, my favourite method of Sophie interacting with the toys (and the world) around her.

The long road to big school

For those of you with kids in daycare you will recognize the term "big school".  We had our first meeting today about Sophie's transition to big school.  It went well.  Yay!!!  Now I can breathe, I had butterflies this morning and I don't know why.  Ok I do know why but it is so silly.  School doesn't start until September and I had butterflies about it in February.  The meeting had been weighing heavily on my mind for some time now. 

We decided not to send Sophie to school for JK and SK with a heavy heart.  I have talked about it on my blog before, I know we made the right decision for Sophie but it wasn't without some real turmoil for myself to come to the decision not to send her.  I know my girl would have loved it socially but medically she just wasn't ready.

So grade one is knocking at the door and all systems are go.  We decided that Sophie should attend her home school, which does not have a self contained classroom or developmental class.  She will be in a typical grade one class with all her peers from the neighbourhood.  I have wanted this for a long time, ever since we were contemplating JK.  Her neurologist was the first professional to suggest it to us, that Sophie would benefit from having kids in her class that can talk and interact with her and involve her in activities.  It was music to my ears.  I want Sophie to go to the same school as her brother and to meet neighbourhood friends that she is going to grow up with.

Now I am not going at this with my head in the sand, I know Sophie will need major support in the classroom to accomplish this, thus the meeting today.  It was very positive, we met with the school board's special education co-ordinator and the learning support teacher from her school and we had three of Sophie's case co-ordinators there as well.  Everyone seemed to be on the same page and we discussed alot of options and back-up plans for down the road if we need them.  We have another meeting in about a month and that will be a large one, probably about 15-18 people including all her therapists and co-ordinators.  Nursing was discussed and her co-ordinator wants full-time nursing for her at school.  She will also have an EA.  The school wants Sophie to start making some visits to the school before this school year ends so she can become at least a little bit familiar with the environment.  She is there with me often to pick up Lucas anyway, but I thought it was an excellent idea.  They want Sophie to be at school the first day, it is an important day for every grade one student and no one wants her to miss out on that.  Music to my ears again.

So we will continue on this path of preparing my girl for big school.  It is so exciting and I think the butterflies will be making a few more appearances for me and maybe Sophie too, but she is braver than I.  :)

Another day in paradise

While we were in Florida the weather was so beautiful I wanted to take Lucas and Sophie to the beach and to a nature reserve on Sanibel Island.  The nature reserve, the Ding Darling Wildlife Refuge, was alot of fun.  They had a visitor centre with interactive exhibits and Lucas and Sophie both enjoyed it. 

We then decided to a hike. Lucas was hot and tired but he trudged along anyway and I was so excited when we came across an aligator.  Lucas thought it was like African Lion Safari and the animals were there because there were fences, he just couldn't wrap his head around the fact that this aligator was in its natural habitat and could come and go as he pleased.  We were about 20 feet from this guy!  We also saw some beautiful birds, the names of which escape me now.

As we were heading back an animal ran in front of me and I thought it was a bobcat, my heart started to race as many had been sighted that week.  But I quickly realized it was a raccoon  :p

We hit the beach next, the water is too cold to swim for long but Lucas and Jason gave it a try without wetsuits for a short bit.  The beach is beautiful and I wanted Lucas and Sophie to see this very unique island for a certain reason.

This....

This beach has shells as far as the eye can see.  It is so breathtaking and just makes you stop and take it all in.  Lucas was doing the Sanibel stoop in no time looking for shells to add to his collection
.

We ended our adventure with an ice cream from a little shop that makes them homemade right in the shop and they were amazing (and huge!).  It was a great end to another day in paradise.

Return from paradise

We have been planning our big family trip to Florida for many months now.  We had hoped to go last year but it just didn't work out, so we vowed to make it a go this year.  Jason's dad and step-mom are snowbirds and we have been chomping at the bit to get down to see them for a long time.  The last visit we had there Lucas was 7 months old.

Gettting Sophie on a plane required alot of planning and thinking about what we would need and what we had to be ready for if something didn't go as expected.  I am happy to say that everything went great.  We had a great trip down and back, and of course the in between was what we did it all for and it was amazing.  Sophie was a fantastic traveller and didn't complain about the long days much at all.  Our trip down was 12 hours and the trip home was about 10 hours. 

The weather gods were on our side and we had gorgeous weather every single day.  It was perfect.  Beautifully warm in the day and cooled down at night for sleeping.  Seeing the sunset behind the palm trees each night was definitely something I could get used to. 

Lucas was in heaven with the pool right there, he waited about 10 minutes after we arrived the first night before he begged to go in.  He was pretty much in there if we were home for the rest of the trip.  I had to check for fins.  Sophie loved it just as much and it was so easy to get her in and out without having to pack her into the car or her wheelchair, we were truly spoiled.

We had a great day on the boat even though we didn't see any dolphins or manatees this trip.  Sophie wasn't too sure what to think of the boat, she was very quiet but happy.  Lucas was interested in the GPS especially when it showed all the swamps we were going by and his Opa was happy to explain it all.

We had one big day of travelling while we were in Florida and that was for a trip promised to Lucas.  Disney was just too far to travel at over 4 hours away, so we decided that Busch Gardens would be a great compromise.  And it delivered.  Lucas asked to go back every day until we left Florida.  We will definitely go back next time we are down there.  There weren't many rides that Sophie could go on, but there were a couple and the shows in the Sesame Street village were a hit for her.  Sophie went on the carousel, she wasn't too sure about all the spinning but she made it through.

 Lucas with his Nana

Everything was very accessible, we were getting on the train here to go through the animal safari part of the park.  Sophie's ticket to get into Busch Gardens was half price as was one of our adult tickets as her caregiver.  It was a nice surprise. 

 

Sophie thought she was in heaven when Elmo and Big Bird came up to us while we were strolling through the park.  Then we went to see their big show and she was mesmerized.  They made her feel very special there and I was so happy for my girl to be able to see her favourite characters up close again.

Lucas went on all the water rides with his Opa and with Jason and I went on all the rollercoasters with him.  Our absolute favourite was the Cheetah Hunt.  It is a new ride at the park and definitely one of the best I have ever been on.   You go from 0 to 60mph in 3 seconds - just like a Cheetah.  :Lucas has my love of roller coasters so it was fun trying them all out.

We had a fantastic day at the park, it was definitely worth the trip and we will be back.

More tomorrow....