What, we've been discharged?

It almost seems surreal that here I sit, knowing that there is a clincic at the Alberta Children's Hospital that we have been discharged from! Ellie has such a huge team of doctor's looking into so many areas of her growth and development it is often difficult to keep them all straight.

Six-months ago today we visited the Endocrine Clinic at ACH to have Ellie's growth reviewed. They indicated that Ellie's Bone Age Test (the wrist x-ray from September to give an estimate of the age of her bones) was likely only 30 months at that time. This was a relief since we could then do a slight adjustment for her bone age and be a little closer to her developmental age delays.

In January, they ordered a few tests - some for information and some for ruling out significant issues - and asked us to come back in six-months for another weigh and measure. The importance of coming back gave us a weight and measurement on the same scale and ruler.

In April, I noticed that Ellie's pants seemed to be getting shorter - the rate of which she grows (slowly) I thought we were just shrinking her clothes from too much washing. Then in May, I noticed the sleeves on her t-shirts and sweaters were also too short and I realized she really was growing! Hooray, I had to go shopping because Ellie was out-growing clothes!!! I was so excited - I usually go shopping due to seasonal changes, so this was incredible.

Today we learned that Ellie has grown 4.9 cm (almost 2" for my American friends) in the last 6-months. Our Endocrine doctor said that rate of growth is more important to watch than the actual height of a child, and the recommendation for a child who is around 4-years old is between 4 and 9 cm of growth annually. She said that since Ellie has done 4.9 cm in six months, she could extrapolate that she would grow 10 cm in a year which tells her that Ellie is catching up a little bit to where she should be for her body. From this, she feels that Ellie does not have an Endocrine disorder and that we don't need to have more tests or even delve into the world of growth hormones.

Praise God!

And so we were officially discharged from going back to that clinic - the first one EVER! As we walked back to the car, I realized how light I felt emotionally - who knew that this was weighing so heavily on my heart and mind.

I am so thankful that Ellie's growing again and having growth spurts to bring her back to where she should be. There is nothing more scary than seeing your baby's growth chart flat-line and often reverse because they aren't growing or gaining weight but losing weight.

There's more that I could say, but I will save that for another blog post. Thanks everyone for your thoughts and prayers - they do carry us through!

The Road to Independence

I have had the incredible blessing of stumbling upon an author by the name of Brenda M. Batts, who has an autistic child and has written a couple books on potty training and independence (see the title of my blog for one of the titles of her books). Something about this author has really resonated with me and I ordered all of the three books that Indigo.ca had by her - I'm so thankful that I did!

Yesterday I started reading the book called "The Road to Independance - Independence Skills Training for Special Needs Children" - wonderful, wonderful book. I happened upon a beautiful story that had me bawling by the end of it, and I knew I needed to include it on my blog.

My Beautiful Boy

"This is what I know, all children have an angel."

Once upon a time, there was a child with autism named Alex who was ready to be born.

So one day he asked God, "They tell me you are sending me to Earth soon. How am I going to live there being autistic, so small, and so helpless?"

"Among the many angels guarding you, I chose one special angel that will take extra care of you. This angel will be waiting for you when you arrive. She does not know it yet, but I am going to prepare her heart and mind to receive you. You will become her special assignment on Earth."

"But tell me, Lord, here in Heaven, I don't do anything, but sing and smile. That's enough for me to be happy. But how am I going to be able to understand when people talk to me if I am autistic? I don't understand the language they speak on Earth."

"Your angel will help teach you how to communicate. She will teach you the most beautiful and sweet words you will ever hear. She will read your actions and respond to your cries for help when it seems that no one else really understands. And with much patience, love, and care, your angel will teach you what you need to learn in order to be successful down there."

The little baby inquired again, "And what am I going to do when I want to talk to you?"

The Lord answered, "Your angel will place your hands together and will teach you how to pray to me. She will talk to me every night and ask me for your protection from those who misunderstand you."

"But Lord, I've heard that down on Earth there will be people who will not believe in me. And they will make decisions for me even when those decisons are not the right ones. They will make assumptions about my actions without really knowing me, and since I cannot talk, they will not understand. Who will protect me?"

"Your angel will defend you at the risk of her own life. She will believe in you always and will speak for you when others don't understand you. Don't fret," said the Lord. "Your angel will always talk to others about your greatness and your potential, and she will teach you how to express yourself to others. If she sees injustices being done to you, she will softly tell the truth and always be there for you."

At that moment, there was much peace in Heaven. But voices from earth could already be heard as the child hurriedly asked softly, "Oh God, if I am about to leave now, please tell me my angel's name."

"Your angel's name is of no importance, but since you must know, you will simply call her Mommy."

Author unknown

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

2011 in Review

I tend to feel a bit nostalgic the last few days of the year, and really think back over the year to remember what we did and if it was a good one. It wasn't until November or so that I finally got used to writing "2011" - and now I have to start fresh with a new number tomorrow!

This year has been a potporri of everything - from incredible joy like the birth of our beautiful boy, to heart-wrenching moments like the passing away of my beautiful Auntie, I can look back and say we are blessed and God has been with us every step of the way.

The challenge for myself in this blog is to come up with twelve wonderful moments from the year to share with you:

January - I had a terrific visit with my Aunt & Uncle when I took them some meals. It was such a blessing to visit with them both one more time before my Aunt's bone marrow transplant.

February - our beautiful boy Willem Bruce joined the family.

March - Mark was home with me and the new baby for a month.

April - We were able to fly to Vancouver and celebrate the wedding of one of Mark's cousins. We were also able to see Mark's folks and sister and introduce them to Baby Will! (they live in the USA and UK respectively).

May - Will started sleeping for 8 hours at night - glorious! I got to say good-bye to my Auntie one more time and introduce her to my son.

June - We celebrated the achievement of my Bachelore of Management degree as a family - even though it was a year late, it was wonderful. We also celebrated the life of my Auntie who passed away at the end of June.

July - Life continued to settle into a routine, I got a new client, was able to attend a scrapbooking workshop, and watch my little family grow.

August - We experienced two asthma-related trips to the ER with Ellie which included an ambulance ride to another hospital and an over-night. This event made me start to push for more tests and investigations into her health and development.

September - Probably the darkest month for me/us - we had test results early in the month to know that her chronological age and developmental age were significantly apart. We also were told that there was an issue with her bones - waiting for the next appointments was like standing on the edge of a great chasm of blackness. We had no idea what was coming or what to expect.

October - Ellie was diagnosed with severe speech and language delay and we were able to get her into a special needs school. While it was difficult to experience this instant change without having time to think, for me, it was good that we had a plan.

November - We went to Edmonton as a family to celebrate the wedding of one of my cousins. Mark and I also went to Banff for the weekend whithout kids!

December - We enjoyed a week-long visit from Mark's Mom, Christmas, and more developmental advancements from both of our kids - Will's cut two teeth (#4 and #5) and is taking a few nervous steps here and there; Ellie's singing, dancing and walking on her tip-toes!

Jasmine the Chipette

I've been thinking about blogging for a few weeks now, but last week was brutal as the whole house came down with the latest-and-greatest flu. What made this so brutal is that it took out each of us one by one, and while we aren't all back to 100%, we are on the mend and for that I am thankful. We spent last Christmas in the ER with Ellie's asthma, so it has been a fervent prayer that we are healthy this year.

Ellie got glasses about a month ago now, and while it was yet another "thing" on our list of growing "things" we are dealing with and getting taken care of, we realize it's really not that big of a deal in the grand scheme. But, like anything, you have to pause and go "hmmm, this is not what we planned for our 3-yr-old". Since there are many generations of glasses wearers in our family's, we knew our kids would eventually get glasses but we hoped it would be at age 5 or 6, not age 3.

The optician's at our eye doc's office were great, though they did make me nervous (ok, and a little ticked) with all the dooms-day predictions of how Ellie would trash her glasses and we'd be in every weekend, and how it's so much easier explaining to a 5-yr old kid the need to wear and protect these things, blah, blah, blah. Ellie is my fearless kid - everything she has ever done since birth has been without hesitation, so I knew that as soon as she could see the difference glasses made, there wouldn't be a problem.

I think we had her wearing them most of the time within three days, and her teachers at school had her wearing them without issue the first day I sent the glasses to school. Slowly, we have been increasing the "venues" for wear, so that Ellie gets used to having them on in the car, grocery shopping, church, etc. A few weeks ago, we had a kids Christmas party after church with a potluck lunch and a visit from Santa - I thought this was the perfect opportunity for Ellie to wear her glasses at church - she'd be in a new crowd but still under my care (as opposed to the Sunday School teachers care).

What was amazing to me was how shy she was with them! When people would say "nice glasses Ellie!" she would whip them off her face and not be interested in wearing them for a while. That hurt my Mommy-heart because I knew that she knew something was different for her than the rest of the kids.

So then I ramped up my search for a cartoon or character in a book that wore glasses - surprisingly, there are none! I have been watching and looking for a while, and realize there are many cartoons that meet the various aspects of a child's life - absentee parents (where are Max & Ruby's parents?), younger siblings (Caillou and Dora), etc. but there are no kids that wear glasses (at least none that I could see in the times of our Treehouse TV viewings).

Daddy Pig is the closest character I found. He's from Ellie's favourite British cartoon "Peppa Pig", and thanks to her Auntie's who live in the UK, we are huge fans. While Ellie can relate more to 3-yr old Peppa and her baby brother George, Daddy Pig often gets admired (by me) for wearing glasses in hopes that Ellie would see them as normal.

 Then today's miracle happened. We went for a treat for lunch and got a McDonald's Happy Meal. Alvin & The Chipmunks is the current box and the toys, and when you order a Happy Meal they just ask if you want a girl toy or a boy toy. Usually we don't bother with the toys but today I said a toy for a girl - to my amazement, it was a girl chipmunk named Jasmine. Ellie was playing and playing with her and then all of a sudden, we both saw that she was wearing glasses! Ellie said "hey, I wear glasses too!" to Jasmine, and has been inseparable from this little toy (even taking her to bed at nap and bed time).

This has been my miracle today, and while there are miracles every day, I had to write about this one. God has blessed me with a cartoon character who wears glasses! God is so good!