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