Ayla update July 2012

Hi everyone!  I hope you all have access to air conditioning wherever you are!  Today is a hot one!

I jsut wanted to send an update out about our appointment that we had at Sick Kids in Toronto yesterday. 

We saw both the dermatologist and the rhuematologist.  They have both agree'd that the infusions that's she has been getting over the last 10 months aren't doing what they wanted. 

They think she is possibly getting worse in the tummy area.  Her fascia (layer under the skin) seems to have more inflammation there than in other part of her body.  Legs and tummy seem to be the area's where it's the worst.  Plus side is, she is growing like a weed.  Certainly catching up on lost inches and pounds!  That was something they were/are concerned about b/c the fascia restriction/tightness could inhibit growth.

So the next step is a broader spectrum oral medication that she would take 2x/day along with the injections we do at home.  The side effects of this medication are similar to those of the injection she's been getting for 2 years.  That said, they would be doing bloodwork weekly for 4-6 weeks, biweekly, then 6 weeks (which is what we do now). 

I have some research to do on the medication.  It's called MMF-Cellcept.  It's apparently been used to treat her disease (Eosinophilac Faccitis) in adults before with success. 

After about 2 months on the medication we would return back to Sick Kids for evaluation but likely will keep doing it for 4-6 months in hopes of results. 

Still the best hope is for her to wake up and have this disease gone, but we keep pushing forward accepting the path we are on knowing God is with us and with Ayla, no matter how long she has this disease for. 

He's given us much peace over these last few years and continues to do so.  Ayla is so amazing and only He could make her so resilient:)  She even smiled at a doctor yesterday! 

We were able to see Ryan's Aunt and Uncle.  His uncle is currently undergoing heavy radiation therapy at Princess Margret, which is right accross the street from Sick Kids.  It was good to see them.  Please pray for them if you have a moment. 

So far there is no movement on our house.  We have another open house this coming Sunday.  Hopefully we will all be able to be together as a family soon!

Thanks and i hope you all have a great summer!