The cutest puppy ever

Fun photos

Some fun results from the digital photography course I am taking this week.

Happy birthday to my big boy!  Hope you are enjoying some pie right about now.
Love
Mommy

Three birthdays

Three summer birthdays to remember.  First came Jenn's with good friends and wild karaoke birthday songs...

and some new pjs!  Rob worked all day and then came home set on and ready to make dinner.   To all you guys out there--the best thing a man could do for his girl is to make dinner and buy her comfy pjs.  At least if he is married to me, that is.  Then came our Jazzy-girl with thoughtful gifts from brothers and Mom.  

Something crafty, something to play with, a Bible of her own (now that she is reading) and ending with a special green canoe paddle and flowers from Daddy.

The big party-bash is scheduled for this Sunday.  The plan has been in the works for a long time now.  Party bags are made.  Pinata in process but we shouldn't have tried to attach the body before the head dried!  

Our upside-down owl holding a branch is now in two pieces.  Don't worry, it will look like an owl by Sunday!

I am off to a photography course next week so I will miss celebrating Levi's birthday on the day of.  I feel strange about that.  I enjoy reminiscing about how their birthdays actually went.  Sometimes I wonder if their arrivals into the world reflect their personalities.  Levi was in a hurry to get here, crashing onto the scene in a mere four hours.  Whereas Jazzy was comfy inside, happy to curl up and stay in her warm mama cocoon until evening.  I laboured with Jack for a long time before he decided to come late into the night on day two.  Now fast forward to 7 and 5 and 2.5 years later:  Jazzy the careful, creative observer and still an incurable night owl.  Levi the crashing, funny scientist always experimenting with balance, ropes, pieces of wood just to see what happens.  Our Jack-in-the-box boy, now you see him now you don't mischief maker who takes a little more time to reach his milestones but how beautifully he does them when he is ready.  Because their birthdays are so close together and they wanted to invite the same people, we decided to go for a combined party this year.  Littlest Pet Shop mets Cars.   I am still trying to figure out the best way to pull off this mash-up theme.  A home-made Pet Shop in a get-away Car cake topper is definately in order.  But I always like to celebrate on the actual day.  I think it is important to feel special and loved on the day of your birthday.  We typically make their favourite meal and give family gifts with cake and singing and stories.  I want each of my children to know who they are, where they came from and how much they are loved and valued in our family. Chosen. Purposed.  Loved.  Celebrated.

Do you have any birthday traditions you do with your family each year?  Please share!  We love comments.

I am still in three is a beautiful number mode.  My camera is fixed and I am looking forward to the first time away on my own in 7 years!

three is a beautiful number

Three beautiful faces.  Three hot, action-packed weeks into summer.  Three days past a wonderfully celebrated birthday and still counting my blessings.

Speech Therapy

Jack is now doing some Talk Tool speech therapy with exercises that target his oral muscles and breathing to help him build body awareness to make some of the sounds we are asking him to make.  Right now he gives open mouthed kisses.  Like most kids he is on a "pucker" learning curve.  He loves to sing so he opens his mouth and belts out an "ahh" along to the music.  His favourite these days is the "Itsy Bitsy Spider"  with the actions of course.  But those lips don't want to do any work!  So we came home with a little horn that he needs to blow 10 times a day focusing on bringing his lips together without his teeth or tongue working to stabilize the mouth-piece.  I am excited to experience more exercises with horns and straws that will help him understand how to move and breath properly to mimic speech sounds.   It is one thing for Jack to hear me make a sound and want to mimic it but what if he just doesn't know how to make his lips/tongue/jaw/breath do what it needs to do in the right sequence?  I think this program might really help Jack to progress with his speech by helping him learn how to make all his speaking parts work together.

Here is an interesting article called The Oral-Motor Myths of Down Syndrome. (Just click the second listing on the google search which is a pdf file of this article)

Jack also really likes to draw.  He is dangerous left unsupervised with an uncapped marker and if he runs out of paper...look out white couch.  Having older siblings around who always pick up their things, there are many markers to be found.  Jazzy has a special place in her heart for permanent markers.  So far most furniture has been spared and the only permanent marker incident occurred in her room.  As soon I hear the sound of the cap coming off of the marker I run.  Jack usually pops one off and then chucks it.  He doesn't have any more use for it!  That pop can wake me out of a dead sleep and then you have until the clatter sound of the lid hitting the ground to intercept and avoid some major graffiti!

I wish I could have snapped a photo of his emerald green mint smelly-markered legs!  Camera still out of order.

Sigh.

We were in looking at cameras the other day.  The new version of my camera has video capability.  But when you can replace the lens with a used one for $60  it is hard to justify the cost of a major upgrade.   Now if I could just find someone close by who wants to sell theirs to me!

Part time work?

Unfortunately my camera took a little tumble off of the dining room table the other day.  My regular lens is completely unreparable and I feel totally lost without a camera ready to go.  These photos were taken earlier this summer with the boys on our back swing set.  Levi is happy being the big brother.  Jack is in his favourite place.  He even knows the sign for it. 

Speaking of signing...we just got our two Signing Time DVDs in the mail.  I have never seen Jack engaged like that with something he was watching.  He was so happy to see all the different children signing.  When he saw a baby he would sign "baby" and then they were teaching the sign for shoes and he signed right along.   The next day he was signing some of the words by himself.  It is amazing to see how quickly he is able to learn and start communicating more with us.  We are learning colours and food now.  Tomorrow we are joining a Signing Time instructor in Bracebridge to visit a farm and learn some more signs for animals.

I thought this summer would be a little more relaxing but I am quickly learning that I need to keep my eyes on Jack at all times, even if he is "safely" tucked away in our back yard.  He gets into the smallest places and into things you could never image.  One second he is in the sandbox, the next under the back deck or up to his waist in mud in the neighbours newly seeded back yard.  One day he got his head wedged between the two composters at the end of the garden.   The next incident involved him being stuck between our wooden fence that overlapped the neighbours chain-link fence.  Rob was trying to pull him out from the neighbours side but his knees were folded under the bottom fence board.  I finally managed to wiggle his legs sideways one at a time an lift him out.  Once we got him out we saw the blue ball he must have been trying to get, about three feet in from the fence edge.  I suppose there are some advantages to being a determined, petite two year old...just not for the parent-rescuers.

Jack basically runs me off my feet.  He is so busy and active and inquisitive that I am hard pressed to get the housework done some times!  I know, you all wish you could have this kind of excuse to fall back on!  But I am serious...I think it is time to bring in some help in the form of a teenager in need of a part time job!   I need an extra set of hands AND eyes!  Remember the last time I left him in his siblings watch, I ended up with a gallon of paint down the staircase.   I think I need someone more professional, someone older than say...6. 

But you know when I look in this beautiful face, I am so thankful to be sharing my life with you, Jack.  You are wonderful and each day you amaze me.  We need people like Jack in our lives to inspire us.  Why are we so quick to reject babies with Down Syndrome?  Their light shines so brightly in this sometimes dark world.  I don't know one person who has encountered Jack that is untouched in a positive way by his warmth and affection.  I am so glad that I didn't miss out on you, Jack.

To work or not to work

Whatever happened to Jenn's art teaching?

Sorry I haven't been posting in the last couple of weeks.  Some major decision making on my part has taken up all the brain space I have right now.  Once we got Jack out of surgery and the other kids finished school, I was hit by some major work changes.  I am scheduled to go back to work to teach in September.  At first I was looking forward to it, thinking it would be great to go back to teach high school art again, a job that combines a real passion to create artistically and working with teens which is something I have always loved to do.  Now come the BUTS.  As of the first week in June, I was scheduled to teach art.  On June 16th a lot of what I was scheduled to teach suddenly changed because the principal thought I could better meet the school's needs elsewhere.  I have had a meeting with him and a couple of discussions, emails but we seem unable to come to an agreement.  And since he is the boss...I am now supposed to be teaching 2 art classes and a geography first semester and a sundry of other classes not including art second semester.

Needless to say this dramatic change and difficult start with my principal has brought on tremendous stress and a period of questioning for me.  To work or not to work?  Maybe the question should be more clearly:  to go back to my job as a teacher or not?  At different moments in one day I can be ready to resign or go forward and just do it.   I wish that I could be one of those moms that could just choose to stay at home with the kids, but I find I need something more: an outlet for creativity and professionalism that does not revolve around children, play dates, therapy appointments, laundry, cooking meals, etc.  Don't get me wrong, I LOVE being a mom.  I love my children and my husband more than life itself.  It is about striking the right balance for me to continue to love and serve my family but also be renewed in my own person by doing the things that feed my soul.  Either way, I need a vision for the way forward and I need it quick.  I want to enjoy this summer with my kids being fully present in heart, mind and body.

That being said, I am not sure going back to teaching is the answer.  There are many ways I could begin to pursue my career as an artist and teacher.    But this job has been waiting for me.  Held for me.  Should I just decide to go ahead and try?  Or do I decide this is too stressful for me and my family and not try at all?  Will I regret my decisions?

At the same time,  I feel like we take everything so seriously.  Don't you?

At the risk of being to serious today, I will end my post here.  Just wanted to let you know why I have been so silent.

Jack is doing well with his eye pressures.  Rob took him to Sick Kids last Monday and his pressures were high at 27 but we have now started him back on some pressure lowering drops.  His doctor seems unconcerned and that his recovery is right on track.  The stats say that 50% of children usually need to start drops again after implant surgery.  So maybe Jack falls into this statistic.

When I haven't been ironing out work issues, we have been having fun keeping summer hours riding our bikes, swimming, learning to sign and doing some new oral motor therapies with Jack.  Jasmine is now riding her bike without the training wheels on the road out in front of our house.  Only when one of us parents can have eyes on her and the road as well.  Levi can ride without training wheels but prefers the comfort of having them still.  He wants a skate board for his birthday.  We are a family with lots of summer birthdays so it should be a happening summer!

Hope you are having a great summer too!

Rowing our boat

Well, Jack seems to be coming along well with his eye.  Right now we are coasting merrily down the stream, waiting for pressures to settle out.  Last Thursday's check up measured pressures in his right eye to be 8.  This is still well below normal range.  We will go back in a week tomorrow to recheck pressures.  We are told they should continue to climb and hopefully level off below 15.  If they go higher, we will start adding the pressure lowering drops again.  I am hopeful that the implant is working to keep pressures under control.  Jack as fully back to his happy self.  Here is a video of him and the kids singing on a tire swing.  How many bodies can you stack on a good old tire swing?

A whole lota flying and a whole lota rain...

This itsy bitsy spider pretty much flies to the top of the spout!   And rain...there is a whole lot of rain in Jack's version. But the sun is shining through his obvious love for brother and sister.

Jack is cruising along with recovery from surgery.  We go down tomorrow to have his pressures tested again as follow up to surgery but I have no bad feelings about this one.  He seems to be doing great still pretty agitated at times but overall doing well.

He has learned to sign Mommy and Daddy recently.  I have ordered some Signing Time DVDs so we will see if they are as wonderful as everyone declares them to be.  We have reached a plateau where we need to give Jack some more words. Signing is helping alleviate the frustration of not being able to articulate himself well.   But we are also working hard to encourage him to make word sounds.  Yesterday Levi and I were coaching him to say "Bu-Bu-Bubble" and he was happily participating.  It is all coming along well so long as Mom doesn't take things too seriously.  Too many therapy appointments tend to drag me down and keep the focus on what goals we are not yet reaching.  It is a delicate balance to keep it moving forward and still keep it fun for all, including Jack.

More to come about oral motor speech therapy and I will update about tomorrow's appointment.

Surgery +2 days

We went to check in with the Opthamologist yesterday around 2 pm.  Traffic in Toronto was as harrowing as usual but we made it before they shut the clinic!  The doctors took off the eye guard and looked at what they had done in the glaucoma implant surgery.  They were happy with the stitches and look of it.  There is a lot of redness and swelling on the one side but his pressures once measuring close to 40 now read 4!  What a difference.  They tell me that pressures will slowly creep back up but hopefully stabilize in a healthy range (10-15).

It actually is not too hard to look at (minus the bumps and bruises from playing, dirt and a runny nose).  And I would even say that his pupils look pretty close to the same size whereas before, the right pupil seemed always over dilated.  It certainly hasn't slowed him down.  He was up until 11pm last night and was excited to play with siblings this evening.

He has been go-go-go.  This morning I finally figured out that some of his going might be agitation because he has pain.  It is hard for a little boy to tell you when it hurts and Jack rarely cries.  So I gave him tempra this morning and we both slept for an hour while brother and sister were at school.  The extra aggressiveness might also be from the anesthetic.  Anyone know?

The greatest amount of my relief comes from it just being over.  But, I also understand we were well covered with prayer and Jack seems to be recovering well.   Thank you Lord for healing.

We will go down again next week to monitor pressures and make sure the implant is still doing what it is supposed to.  Then, hopefully life will take on a slower, relaxing pace.  School is out next Tuesday.  I am looking forward to waking up Wednesday morning with my three chicks and saying...."now what do you want to do with this day?"   The least amount of programming the better!  Let's go to the beach, the park, camping, visiting friends, having fun together.

 

 

 

Surgery +1 day

We got out of surgery around 12 noon yesterday.  Jack came through the anesthetic really well.  He was groggy and sleepy and wanting to be cuddled for the rest of the day but otherwise not in too much pain.  Mama was so relieved to have it over with that I had no problem with some extra cuddling and snoozing together.  This morning Jack was up at his usual time, not slowed down one bit.  He has been so good about keeping the eye patch on.

He and Levi have been having their usual fun this morning.  As I write, I can hear them pounding out a song to Jesus on the piano.

We will leave in the next few minutes to go back to Sick Kids to see the Opthamologist for our post-operative check up.  Jack will lose his eye patch and check his pressures.  I am anxious to see if the implant is working.  Amazed as usual by Jacks hearty recovery from all of this.  Praising God for small mercies.  We will let you know what the doctor says today.  Thank you to Grandma who has been looking after everyone for the last couple of days including me and to Grandpa for lending her to us.  Thank you to all of you who were thinking and praying for us.   You helped God's grace sustain us.

Yesterday the surgical waiting room was emotionally charged.  We were waiting with 2  other families whose children were having cancer removed.   We cried for one another as each family released their little one to the hands of the surgeons.  Jack was led through the doors in a little plastic car.  As he went through he turned with a look of panic on his face as he burst into tears.  Rob and I were helpless to respond to his fears.  It was necessary to let him go.  As we turned we saw other families still holding their children with knowing tears in their eyes as they waited to do the same.  It was a small space, so it was not hard to understand and share in what each family was experiencing for a short time.  Three years old with cute pig-tails on either side of her head was having her eye taken out because it contained cancerous tumours.  Nurses and social work staff were working hard to take as much of the fear of the unknown out of the process.  They were blowing bubbles with oxygen masks and talking about waking up with not a new ear or a new nose but with a new eye.  With tears in her eyes her grandmother shared that they would rather lose the eye than have the cancer metastasize to her brain.  Eyes still wet from leaving Jack, I wept for their suffering.  How is it that we live in a world where innocent children must go through things like this with no fault of their own?

I am grateful that Jack will not be losing an eye.  His will see.  He will live and love for many more years to come.  Pray with me that this little girl will do the same.  I am grateful for grace and strength and hope that renews itself each time I go to Him.

 

Surgery Today

We are leaving now for Jack's surgery.  He goes in at 8 am for a 3-4 hour procedure.  We need to be there by 6:00 am.  Please pray for him when you think of it.  We would like this to be the one that brings full healing.  We plan to stay down over night to see the doctors tomorrow and then will be able to update more later.

 

Just like every other kid

I love seeing Jack run around with his brother and sister.  He has Down Syndrome and he is just like every other kid.  His face lit up when we first entered the cow barn.

The allure of riding the John Deer tractor with big brother...

And the rush of driving it himself.

Good friends and kittens to snuggle.

Running with a puppy on his leash.  I am still trying to get the hang of taking photos with the iphone but they were moving fast!

Don't forget the bunnies and straw filled hair.

Followed by happy exhaustion.

LIfe is full of good things.  Worry not for tomorrow for tomorrow has enough worries of its own.  Holding onto the joy of this moment!

 

 

Georgian Bay

I don't know why I am struggling so much with the idea that Jack will be heading into surgery again in a week, but I am.  We thought it would be a good idea to take advantage of some good weather and took off to camp over night on Georgian Bay this past weekend.  It was good for my soul to be surrounded by such natural beauty and make some more great memories with the kids.  The quiet also allowed me some time to talk to God.  I know that he is in control of the details.  It is the actual trusting where I seem to be weak.

The kids love going out there.  They are beginning to develop some paddling and some serious frog-catching skills.  Jasmine caught the one she is holding with her hands.  Levi is a joker laughing himself silly as he actually manages to blow a floating bowl across the pond to be retrieved.  Daddy is game for fun and Jack discovered that his hat and sandals make good water toys.
Blue lake and rocky shore, I will return once more...
...faith is in the coming.

Waiting for the healing

What do you do when you are holding out for a miracle and it seems like there is still another step to the healing?  Just came back from an update with the Opthamologist for Jack's Glaucoma.  I knew going down that his pressures in the right eye are still not under control.  But they were at 38 psi when the normal range is 10-15 psi.  We have reached crisis point again and the doctor has booked surgery in 2 weeks.  When he was a baby you could tell his pressures were going up because his eye actually stretched and became bigger.  Now that he is older it is harder to see.  But since his laser surgery in February his right pupil has been dilated and slow to contract in the sunlight.  This has gotten better but I think the high pressures are keeping it from coming back to normal.  So, I knew what the answer was going to be today.  My head was ready but my heart rebelled.  It is just not what I want.  I don't want Jack to have to undergo another more invasive surgery.  If only it could be me and not him.   Didn't God make a promise? The final verdict is surgery booked for June 14th.  It will be a 3-4 hour procedure where they physically put in a plastic tube to drain the fluid from the eye when it is too inflated.  There are many risks of scarring, difficulty and ultimately failure and needing to do it all over again in 5 years.  There will be many more follow-up appointments and monitoring.  But what else can we do but walk through?

Here is the link to the Sick Kids Paediatric Glaucoma and Cataract Family Association where they explain the procedure and the possible risks.

http://www.pgcfa.org/kb/entry/154/

If hope is in the hoping and faith is in the coming,  Lord I come.

Wordless Wednesday

Dear Jack,

I love you so much.  There were so many questions that I struggled with around your birth.  I was sad that there seemed to be so many things for you to over come.  I wasn't sure that I could deal with the injustice and stand by your side to clear the way forward for you.  How was I to present you to the world with this black cloud hanging over you?

What a truly beautiful baby you were.  Sunny disposition, peaceful, cuddly.  You have always been a source of such joy.  Having you at home was a real blessing. No one want wanted to whisk you away to do tests.  Daddy and I got to hold you close and look at your tiny hands, feet, chubby cheeks, perfectly shaped head. The next morning we went into the hospital to see the paediatrician.  They drew blood to test for Trisomy 21 which told us for sure that you were indeed a special boy.  But we didn't need a test to tell us that.  You will always be amazing in our eyes. Later in the week came tests to see if your heart was working the way it should and everything looked fine.

You were loved by everyone from the soft, warm, fuzzy tip of your head to your wiggly, squiggly toes.

Jasmine didn't want to put you down.  Levi couldn't wait to play cars with you.  Daddy and I were so proud.  We thought we were home-free until we discovered you also had Glaucoma at four months old.   Then the real trials began.

Six surgeries and so many doctors visits.  You have shown me such courage and strength.   There is nothing that I would change about you.  You are perfectly Jack.  Perfectly funny, impish, curious.  You love to talk, sign and make people laugh with your quirky faces and funny jokes.  Now, you love to walk so much that you run everywhere.  Such joy you bring to our lives.  I don't understand what I was so afraid of, Jack.

What are we afraid of?  Why is it a standard and acceptable option to end a pregnancy when we discover the baby might have Down Syndrome?  When I think of what I might have missed out on, Jack, my knees go weak.

If I could go back to those early days and give myself a taste of the love and happiness we have experienced having you in our family, Jack, maybe I wouldn't have been so afraid of what I didn't know.  I would clearly see the beauty your life was right before me.  You have been a blessing to me, Jack.  I am richer sharing this life with you.

The real change needed to  take place in my own heart, my sweet boy.  And I am so glad that it did.  Thank you for being patient with me.  Now instead of worrying for the future, I look forward to what new things you will show me.  I am excited to see who you will grow up to be.  I am so privileged to be a part of your unfolding life story.

Love,

Mommy