Using your noodle

So many times as Sophie's mom I have had to think outside the box, sourcing items for her that don't cost a fortune, but can be used in the same way as equipment that does cost a fortune.  Luckily Sophie's nurses and other moms of kids with special needs also find things to be used for kids like Sophie.  The neo noodle was one of those great finds.

Sophie is a flinger.  A wiggler.  A mover.  All that flinging, wiggling and moving in her bed because of her cerebral palsy equals bruised knees when she bangs the side of her bed.  For the last three years this has been a major problem and I have rolled blankets to try to protect her legs.  Our friend and support worker bought pillows to prop against the sides of the bed too.  These things both work but Sophie often kicks them out of the way really easily.

As you can see in the above photo, little miss escape artist already had her leg over the noodle and the edge of the bed in the 10 seconds it took me to take these photos.  (When Sophie is in her bed for the night the mattress lowers so she can't fall out.)  She thought these new additions to her bed were super fun.

One of Sophie's nurses told me about some pool noodles that she saw at Canadian Tire that she thought would be perfect for our little arm and leg flinger.  They are super soft and light, they are obviously washable because they are made to be in the water and they are bigger than a regular pool noodle.  They are kind of like a long bean bag with styrofoam peanuts in them.  Last week I lucked out and found them still in stock.

 

The fact that they are washable is really awesome, I can just throw them in the tub if needed.  I will probably roll them in a large blanket to add even more bulk to them, but it will save me from having to roll six large blankets total for both sides like I do now.  I will then put the whole deal under the top sheet to keep them in place.  Possibly the best thing is that they are the pink that match her room accessories. :)

New AFO's

Sophie is feeling much better, her IV antibiotics over 5 days definitely did the trick.  The pneumonia seems to have left the building.  We are hoping to resume summer, if only the weather would cooperate!

Over the years Sophie has had a number of AFO's and it was becoming apparent that she was needing a new pair again.  AFO's (ankle foot orthotics) help Sophie in her stander by preventing her ankle from buckling.  It needs to fit like a glove and unfortunately her most recent pair have been causing us problems for a year.  I took Sophie back to the Orthotist to try to get it figured out but she wasn't willing to listen to what I had to say, at all.  In fact she dismissed all my concerns right away.  It was one of those appointments that it was obvious that she felt she knew best because she was the expert.  I was pretty mad by the end of the appointment because I was sure that the issues were going to remain when we came back for the adjusted AFO's, and of course they did.

So like any other smart consumer I let my wallet do the talking and I asked around and found another Orthotist (AFO's cost almost $6000). I am so happy I did.  It wasn't easy to find another place that does these type of customs but I found an old school gentleman that believes that mom can have valid concerns, but not only that, before I even told him the issues we were having with Sophie's current AFO's, he pointed out what he thought would be problems with them and of course it was all the same concerns I had.  Sold.

He pulled out all the plaster and got to work.  He still uses plaster because he feels it gets the best fit, better than the new fangled stuff.  The proof was in the pudding.  He created a leather booty for within the new AFO to keep Sophie's foot safe and comfortable.  No more hard plastic and moving parts that aren't needed that only cut and rub her foot anyway.  The style is totally different and so far it is working much better.  Sophie has been tolerating her new AFO's very well.  A happy Sophie equals a happy mommy.

Accessible on the road

A little while back we were able to have a visit from a company that sells the MV1 accessible van.  This is not a van that was modified to be accessible.  It is the first purpose built accessible van on the market.  Finally, a company that is innovative in its thinking!

As Sophie gets bigger, longer and heavier we know that there will come a time where it is no longer realistic, or possible, for me to be lifting her into the car everyday.  We aren't there yet but she is seven years and 46 pounds now so it isn't too far off in the future.  Lifting her wheelchair into the van is incredibly difficult and I would love it if I never had to do it again.

Because our driveway is very steep we know that a traditional modified van will not work, it would bottom out every time we pull in the driveway.  Also, the rear entry ramps wouldn't work on the steep incline either.  The MV1 sits high like a regular van or SUV because the ramp is not an afterthought.  And it is a side entry ramp which works perfectly for our driveway and ramp to the house.

The only downfall that we can see is that there is no passenger side seat available if Sophie is in the car in her wheelchair.  That is not the greatest but not a deal breaker either.  It just means that Lucas and I sit in the back beside each other.  There is the option of a jump seat and Lucas thought that was awesome, it would be just like the British taxis we rode in.

We have some time to make a decision but we were excited by the prospect of an accessible vehicle and all the luxury that brings.  We are starting to save up so that hopefully in the next two years or so we can have an accessible van to call our own.  My back is happy just at the thought of it.  :)

Our start to summer

It has been a bit rough around here.  First Lucas had pneumonia and now Sophie is dealing with pneumonia as well.  Lucas was hospitalized for three days, he was very sick needing oxygen and IV antibiotics.  It has taken a few weeks but he seems to be almost back to his normal now.

Sophie is on IV antibiotics for her worsening pneumonia as of yesterday. Luckily we were able to arrange an IV nurse to come to the house each day so that Sophie doesn't have to be inpatient.  We are grateful that the ER doctor knows us from our many ER visits over the years and was willing to jump through hoops so that Sophie could be home, with us caring for her where she is more comfortable. 

This is Sophie yesterday, fast asleep in her wheelchair.
Sophie has been sick for a week and a half now.  We are seeing an increase in seizures and she was on two antibiotics while only getting worse.  We went to her paediatrician on Friday and he sent us straight to the ER (our third trip there with her in 7 days).  Now on day two of IV antibiotics we see her feeling better, slowly the moaning and crying is becoming less and some smiles are peeking out today.  She had fevers still last night, hopefully no more will appear tonight. 

Our trip to the cottage a few weeks ago was not what we had expected because Lucas became so ill and Sophie was having seizures but we muddled through.  Lucas had moments of energy though so all was not lost.

Sophie had a great time at the accessible Rotary park that we love to go to near the cottage.  We had lots of take out from our favourite little restaurant that has the most amazing flavourful food.  We ate fudge and ice cream and had trips to the bakery, what is better than that?

 

My mom, dad and neice Zoe joined us for a couple days which was fun.  The beach was freezing as was the water but it was cozy at the cottage and we had a good time playing games and doing cottage "stuff" like digging in the sand and collecting rocks.

This summer has been full of difficult days, but there has been a lot of smiles in between.  We know that sunshine and pleasant days must be ahead.  Camp days for Lucas and Sophie will be lots of fun and a few more getaways are planned. 

 If nothing else, all this illness has shown how we can rally and get through it, one day at a time.