Preschool Fair

One of the organizations that is helping us navigate these waters called "Special Needs" is The Children's Link Society. Yesterday they held a fair where all the preschools and specialized services came together in one place for parents to easily make connections and talk with people.

I was nervous about what I would find. Everything else on this journey has been very overwhelming and exhausting and has taken time to work through. This was overwhelming by just the sheer volume of organizations represented, but it was an incredible experience as well.

What I wasn't expecting was the common bond I shared with these strangers that I have a child that needs some extra help in a lot of the areas of her life. It was easy to get discouraged by having to relay my story and my daughter's issues to every single representative, as well as the standard "what does your organization offer". But once I separated myself from the emotional aspect of it and thought of it as a task, it was pretty easy (even if it was very tiring!).

I didn't expect to have an awesome conversation with someone from the school board to learn about what would be available to Ellie if she ever enters the "typical" school system. I didn't expect to find a special needs school 10 minutes from my home that would be available to Ellie if we don't feel she's ready for the typical school system. But most of all, I didn't expect to find the instant bond that was shared with each Mom-representative as we spoke of our children with special needs.

There were parents pushing highly visible special children around in strollers, and there were parents like me that were on our own. But once we started talking, it didn't matter that one child was Autistic, one child had Downs or one child had a Developmental Delay - we were parents with a common, unknown and often scary reality that our kids are different. Surprisingly, it was refreshing to be among these parents and make these connections.

I thought it was amusing that the title of the day was a "Fair" as fair's are typically full of fun, screaming rides and incredibly delicious and un-healthy food. But it was a fair! There were screaming kids, a table of coffee and desserts, and we are all on a very fun ride with our own wonderful child, whether they need extra help or not!

Love your kid - that's all that matters.

Endocrine Update

Copy of an email sent tonight:

I'm sorry that I haven't had a chance before now to write about how our appointment at the Endocrine Clinic went on Monday. I think it went great - thank you for all the prayers and phone calls and emails we've gotten this week!

We knew it wouldn't be a hugely informative appointment, but what we did learn was helpful and insightful. They have ordered a bunch of tests that are expected to "rule out" a raft of very low-chance ailments. What they feel is Ellie's biggest threat to her bone density is our numerous trips to the ER due to her Asthma attacks. When we go to the ER, she is put on a round of oral steroids, and one of the side effects of these steroids affects growth and bone density.

We will go to her Pediatrician this week to review her Asthma Treatment Plan and see how we can keep her healthy to avoid trips to the ER and subseqently receive these oral steroids. For now, this is the game plan. It will take months (more than 7) for some of these tests to come back, so the Endocrine Clinic will just see us occaisionally over the next year to monitor Ellie's growth and weight.

Thank you for your continued prayers - please subscribe to my blog if you want more regular updates.

Lori, Mark, Ellie & Will

Endocrine Clinic

A copy of an email sent out tonight:

Tomorrow we start a new journey in the life of the health of our daughter Ellie. I know it's been a while since I've sent an update - I've tried keeping my blog current so I'm not going to go into a lot of detail on this email.

A quick history is this: In September 2011 we knew that Ellie's developmental and chronological age were not the same and we began visiting all of Ellie's doctor's to have everything checked out. It was a really scary time for us, and it was really difficult to look into the future and have any idea of what life was going to look like for Ellie. We realized as parents, you never really know what the future holds for your child - you have wonderful hopes and dreams, but when someone comes along and tells you that this isn't necessarily the way it's going to be, it's a difficult concept to grasp and that's what we were beginning to process of understanding.

What we knew very quickly in the process was that Ellie's development was classified as a severe speech and language delay and she was expressing and comprehending as if she was 18-24 months, not 36 months old. We also knew that there were some serious concerns around her bones and growth and the process began to get into the Endocrine Clinic at the Children's Hospital.

I think that it was a miracle that we were able to divide the issues facing our daughter. October ushered in the start of getting Ellie's developmental delay's looked after. We received placement in a special needs preschool, bussing and Federal & Provincial Funding for her schooling and various other programs that we are able to utilitze. (Thank you taxpayers!!)

A quick update on school - Ellie is doing great. I think she's a bit of a leader in her class from the sounds of things - she's very enthusiastic, likes to try everything and has made friends with everyone. She's a star on the bus and LOVES to go to school on the "baby bus" - often not believing that she needs to get dressed in the morning because she can't wait for the bus to arrive. I have been so blessed to send a happy and excited kid to school and receive a happy and excited kid back home - Will has learned to wave to the bus when it leaves in the morning and looks for Ellie's return with a lot of excitement. Ellie's school is 5 mornings per week - this has caused an incredible amount of alteration of my work schedule but I think things are finally starting to settle into a new routine.

Every day there's things that I call "happy/sad things" -- things that Ellie accomplishes for the first time that you cheer on and then a little tear is shed that it's something she should have done a year ago. Her teachers (she has 5) have said that starting 5 weeks behind the other kids hasn't affected her progression on skills and she's doing great. She got glasses in November and I was able to talk with the Physiotherapist on Friday and she said that she has noticed a huge difference in confidence as Ellie's plays in gym glass - likely a result of having good vision!!

Tomorrow we begin the second half of our journey - our first visit to the Endocrine Clinic. While we know God has been with us every step of this journey so far, I don't believe it is a bad thing to ask for more prayer for us. One of my cousin's on my Dad's side of the family has an extremely rare Endocrine disorder that is genetic - so there is some fear amidst our faith. Thanks to my cousin, we had some specific labs done in December and I got the results back this week so I am going with a bit of information for our Endo Doc that I hope is received well!! Ellie's labs came back pretty good - nothing glaringly "off" so I'm thankful for that.

Thanks for keeping our family in your prayers - a quick update on our boy! He started walking about 10 days ago and now has 7 teeth! We've cut one tooth a week for the last four weeks - he loves terrorizing his big sister and is very tall - I'm learning to keep things out of reach I never had to with Ellie because she was so short! He out-weigh's Ellie but he's still got a few inches before he's taller than her. He's a joy to have in our family.

Love & Hugs,
Lori and the Gang