Joel

To those of you who have been waiting on a Joel update it is finally here and there is much to rejoice over.

I am still torn up inside over whether or not we made the right choice to put Joel on growth hormone.  Over a year ago Joel failed his test to see if he was making growth hormone.  His Endocrinologist told us it was time to put Joel on growth hormone.  I think if you could have growth hormone donors, like we do blood donors it wouldn’t bother me so much.  The growth hormone Joel is on is a synthetic growth hormone.  So six days a week he injects himself with stuff that was never meant to go in his body.  That is hard to swallow when you are trying to embrace a healthy o’naturelle lifestyle.

That being said he is growing!

Not only that he has spine growth.  Often times when the spine is radiated, there is little to no growth.  Joel’s growth is not steady, it is trying to make up for lost time.  Joel was a BIG boy at 4.  He stopped growing during treatment by 6 he had only grown 1/4 of an inch in almost 2 years.  It wasn’t really all that noticeable to folks because Joel went into cancer treatment with a height that was off the charts.  Once treatment ended he grew a wee bit and then just fell off the charts.  Joel is not staying on a given trajectory but instead is climbing.  I think he came back on the chart at about the 10th percentile, in April of this year he was in the 49th percentile July 2nd they told me he was in the 78th percentile. His doctor has said they can not predict what his growth will do they have no idea if he will completely regain what he lost.  Still this is encouraging news despite the fact that I waiver back and forth about the injections.

He had his latest MRI in June and we just got the results that all is clear.  He now moves to once a year MRI’s… wow!  Audio test results are holding their own, Joel has very minimal hearing loss in the very highest frequencies which does not hinder day-to-day life at all.

The hard part is explaining his neuro-psych evaluation, that is where we get very little good news.  He was tested earlier than protocol called for because we had seen some declines.  When he was tested his results did show some slight declines but they were not consistent and were rather minimal so at this point they were not even labelled as such.

Joel remains developmentally disabled.  He can count to ten sometimes, and he cannot read.  Sometimes he can spell his name.  To be frank I could go on for awhile telling you what he can’t do, and what he struggles with, but instead let me tell you what he can do.

A child who has scored in the 1st percentile for memory (believe me this is one time you don’t want to be #1)  has put a Bible verse to memory.  He sang the chorus from, ‘Go Tell it on the Mountain’ to me tonight!  He also ‘read’ Samuel a story before bed.  When it comes to his memory Joel scores in the 1st and 2nd percentile in all areas of evaluation but one.   He scored in the 86th percentile in his ability to retain information told in a story form, they can not explain this, God has created the mind in ways we cannot begin to understand.  So he told Samuel a story in great detail as he flipped the pages so Samuel could look at the beautiful pictures.

Joel is hilarious, he has a fantastic sense of humour, he regularly makes us laugh.  He and Joshua will often dress up and do an impromptu performance.thompson

He has an incredible imagination that seems to have an insatiable appetite for adventure.  On paper they tell us his brain is not functioning to the level it should but we see the wheels turning and know his brain is working so hard.Joel beach

He wants to help, and he likes to be busy assisting Dave if there is a building project going on.  It is so encouraging to see him follow along behind Dave.Joel building  This was not always the case.  Oh sure, Joel showed his love for me but he was Daddy’s little boy, he followed him everywhere, he wanted Daddy to do it, when he needed help… and then cancer raged into our lives and it robbed that relationship.  The only way Dave and I can figure it is that it had to be extremely confusing and scary to go from a little boy who could run faster than his siblings, climb a tree like a monkey with endless energy, to a little boy who could not move his right arm or leg the way he wanted it to, to not be able to hold your head up or even sit up properly, to knowing what you wanted to say but not being able to make the words, all within 24 hours.  Stuck in a room with machines and people that he didn’t know and instead of staying and protecting him or even just picking him up and running out of the building with him, his hero, his Daddy kept leaving.  Dave had to, he had to look after the other children, he had to work.  Joel went very much into himself, we saw episodes of rage that I did not think were possible, we were told not to worry it was normal, but it was anything but normal.  Joel wanted me for everything and he gave the cold shoulder to Dave and it broke Dave’s heart.working

Dave would refer to me as the ‘Joel whisperer’ because I could calm him down or get him to listen when he would refuse to tune in to Dave.  Quite frankly, it was just extremely difficult to see this amazingly tight relationship crumble, with no real explanation.  Dave says he thinks Joel saw me as his lifeline and he clung on.  It is over 4 years from that day when our lives turned upside down.  Things may not be perfect, but Joel sneaks into the car to stow-away with Daddy when Dave has errands to run.  At bedtime it is Daddy who Joel wants to read to him and pray with him.  It does my heart good to see the healing happening.working with Dad

Joel is creative, he builds with Lego, he makes forts.  He has begun to draw, and there is always a story that goes with it.colouring

He can cook and he enjoys being in the kitchen helping.  He makes french toast and scrambled eggs by himself, and will often make some for whoever is hungry!cooking

He is running and jumping perhaps not as well as his peers but he can do it nonetheless.  Remember he could not even sit up let alone stand, his balance has improved greatly! balancing
He is brave and up for a challenge, and likes to be active, every night he asks us, “What are we going to do next day?”pedal boat

Joel loves animals from the ever so small right on up to the huge!  He savours any opportunity he gets to be the one to open the chicken coops up in the morning.  When our garden is planted we do not let our chickens have complete range of the yard, so if one escapes the fenced area he delights in catching them.chicken wrangler

He is a sweet brother and will give rides to his younger sister and her friends.wagon rides

He is just like any other boy and likes  to wrestle with his brothers.  He has been through a lot but it looks like Joel may just surprise them all and come out on top!boys will be boys

Happy Canada Day!!

I know I have been neglecting this poor old blog terribly.  If I have said it once I know I have said it many times, “I do want to write more regularly!”  I love to write and it acts as a lovely journal for us to look back on as a family.  Sadly the past year or so has been poorly documented.  Observing Nature

My struggle has been feeling the need to get it all done.  I haven’t felt right about taking time to write, edit pictures, etc. when I am falling behind in taking care of our family.  Do you remember way back in January our desire to minimize??  Well I am making huge strides but it is taking far longer than I expected.  The nice part is that as each room gets attacked organized, they become so much easier to maintain.  I am shocked at the amount of stuff we have been able to give away and yet we still have a house with… probably more than we need.  It is an ongoing process.The Ladies

Not sure what is like for everyone else but in our neck of the woods it is HOT!  Oh, I know it is not desert conditions but considering that we deal with crazy temperatures in the winter what we are dealing with right now we have every right to call hot.  My guess is few places deal with such a huge fluctuation in temperatures from our brutal cold winters to the humid heat in the summer.  If nothing else we have variety!  The Guys

A friend gave me a great idea for a treat for the kids for tonight!  Our garden has been just overflowing with strawberries this year, yum!  So I took a casserole dish layered it with strawberries, put vanilla ice cream on top and then with strawberries made the Canadian flag.  Fantastic idea right?  Well… when it is over 29 degrees in the house (84.2 F) (that is not including a humidex and yes it is much hotter outside), well the ice cream starts melting and fast, the berries started sinking.  Umm, my beautiful Maple Leaf began to look more like a blob.  Maple LeafNot to mention the one in the picture (Pinterest sigh) had beautifully pointed berries and ours are more plump than pointy.  Well lets just say it won’t win any awards.My Blessings!

As you can see we took the opportunity to take a few pictures of the family.  So hard to get a good picture of all the kids.  I have a few children, I won’t mention any names who prefer not to have their pictures taken so it is always a challenge to get a good shot. This picture of my two girls might have been great if it had not been for the wind.leaves

Had to take another …My girls

Last year I did not post one garden or homestead update, much to Dave’s chagrin.  Here we are in July and once again I have not written anything on the various chickens that we have added this year including meat birds, the ever-expanding garden etc.  Dave and I have decided it might be fun to work on writing a few posts together so look for those in the near future!Samuel O CanadaJust for fun Taliah took a picture of Dave and I… rare I know.

Dave and Cheryl

Hope you all had a wonderful Canada Day, and just incase I am not back on here in time… To my friends to the South have a wonderful Independence Day on the 4th!

The Church Being the Church…

Our fam and new car

I often think if you look for it you can see God’s fingerprints everywhere, today was a day where it was almost hard to pick them out, not for a lack of them, but because there were just so many of them, layer upon layer. It is hard to know where to begin… Dave and [...]

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Glimpse of the Past in the Present

Hannah old fashion

I just recently realized that I did not post this.  While there is snow in the first picture it really wasn’t that long ago that we were still bundling up to head outside.   Do you ever wish you were born in another time? As a girl I wished I was going off to school [...]

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Embracing Joy…

Embracing Joy

I have had some thoughts milling around in my mind.  I wanted to share it here.  Some folks might find it odd that I would put it out there to the world but quite frankly as I have so neglected this poor blog I am not sure that there are that many people who will [...]

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Marking Time…

Joel 9

We mark time in all sorts of ways, weeks, months, seasons, years, birthday and anniversaries.  Most are enjoyable, but not all of these are pleasant, yet we still mark time by them.  It has been 4 years since… Today as I woke up, I was tired, I have been fighting off some form of a [...]

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Hand & Homemade Mondays: Practise Makes Perfect

Knitting

Welcome to Hand & Homemade Mondays, a weekly link up of all the creative things we have been up to.  Feel free to share anything Hand or Homemade.  It can be something you have sewn, knit, crocheted.  A painting, a piece of furniture you have re-finished, woodworking, you name it.  It can even be a new [...]

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Hand & Homemade Mondays ~ Learning to Knit

Baby Samuel

Welcome to Hand & Homemade Mondays, a weekly link up of all the creative things we have been up to.  Feel free to share anything Hand or Homemade.  It can be something you have sewn, knit, crocheted.  A painting, a piece of furniture you have re-finished, woodworking, you name it.  It can even be a new [...]

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Hand & Homemade Mondays : Warmth

PicMonkey Collage scarf 1

Welcome to Hand & Homemade Mondays, a weekly link up of all the creative things we have been up to.  Feel free to share anything Hand or Homemade.  It can be something you have sewn, knit, crocheted.  A painting, a piece of furniture you re-finished, woodworking, you name it.  It can even be a new recipe [...]

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Hand and Homemade Mondays ~ Hearts & Snakes

hearts 1

I have been wanting to make a weekly post about ‘Homemade’ items.  Lately we are always making something around here.  It is with much fear and trepidation that I even consider doing a weekly post.  Those who read here often know just how well I do at weekly posts.  Last year was a rather pathetic [...]

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