What we’ve been up too…

And here I was, planning to get back to blogging and do it regularly, but as this post is almost two months later, that clearly didn’t happen.  But what did happen was that we had a great summer with our family and friends which ended way to quickly.   And then… well I hinted at this a long time ago, but this fall we made a huge decision for our family going forward,  we started homeschooling!!!!   Yes folks, it’s true, we decided to pull our children out of the public school system and start teaching them at home, it’s kinda exciting.  And that probably explains why I haven’t had much time to breathe, let alone blog.

It’s been about 6 weeks and I can cautiously say it’s going well… although I can pretty much guarantee this won’t be a blog where you come to for homeschooling advice.  Rather, we are likely to be the blog that other homeschoolers visit so that they can feel good about themselves… haha    But we are creating a daily routine for ourselves and things do seem to be getting learned so that’s good.   I’m cutting them some slack right now because I KNOW without a doubt that none of my children would have ever flung a math book across the room at school, but at home that can seem like a good thing to do.   I guess trying to set up structure and routine in a place where you feel the most comfortable isn’t the easiest.  But we are persevering.

And the kids are doing really good, and seem to be enjoy being at home.   They really like the fact that if they hunker down and get their work done, it leaves them more time to do what they want to do.  And I like that we can tailor their education to each of their strength’s and weaknesses…  which also means we have to work around my strengths and weaknesses.  Weaknesses in the plural.  Homeschooling is humbling, it really is.

On a lighter note,  I want to take this moment to brag that our William came in 2nd in his cross country meet last week, way to go William!

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He couldn’t run in the Public School’s Cross Country meet this year, but ran in the Christian school meet instead.   There was still a large crowd and Jason thinks there were over 75 boys in his race, maybe more, so we were really very proud that he did so well.  I’m not sure where he got his speed from, maybe from his dad, but it certainly is fun to watch.

I wish I had been able to be there, but as it happens  I was in Toronto at SickKids that day.   I had been asked by the PACT team if I would come and speak at a seminar they were holding on palliative care, and I was very honoured and so said yes.  My mom came to be our substitute teacher for the day, and my dad came with me to Toronto.  I thought that I might cry too much or take too long, but praise God, it all went well.  There was a question period afterwards and I really enjoyed that, the students of the course asked me questions and one of the Dr’s on the team sat with me and facilitated as well as asked me more questions, and I just thought it was a really neat experience.   Not only was I pleased to give back to SickKids in this way, but I was able to see lots of our 4D staff, and one of our nurses from the CCU, as well as some members of the PACT team I hadn’t seen since last August.  Going back to SickKids is always bitter-sweet – but going there makes me feel close to Ava so it’s all good.  Jason and the kids wished that they could have joined me, so we are hoping to go back again soon.

As far as the other kids and what they are up too… Sarah is doing pretty good with her diabetes and her pump – she actually deserves a whole blog post for an update which I will do next.  And Sophia is just her happy sunny self… although lately it seems that she is fed up with being the youngest child.  She is taking to heart every time she doesn’t get to do something or feels left out – it’s tough being five years old.   Erik is programming his heart out  – which means he is still doing things that befuddle me completely so that’s good I think.   Jason is keeping busy as always and I am so thankful for such a wonderful supportive husband who takes such good care of us all.

I wish I had some recent pictures to show you, but I’ve been terrible and haven’t been taking pictures lately, so I will have to leave you with some that we took during our vacation in August.  These first three are pics of us sending off Chinese lanterns to remember our sweet little Birdy.  Jason found them for us and we loved sending them off… they were beautiful and it felt very fitting…

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And here are the four turkeys all together…

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So that’s what we’ve been up too in a nutshell.   We are so thankful for all of our blessings and God’s mercy towards us… it’s amazing.

Ephesians 3:20  Now to him who is able to do far more abundantly than all that we ask or think,according to the power at work within us,
21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

 

Happy Birthday Sophia!

Sophia turns 4 today, Happy birthday Sophia!!!

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She’s growing up so fast, our little sweetie pie.    Our sweetie pie with an iron core.  She’s sweet but tough and it’s a good thing because it’s meant that she can transition between our house and Oma’s and the Ronald MacDonald house no problem.   She’s fine with whoever can take care of her,  as long as they love her and can stand her constant chatter… hahaha. 🙂

Last year when I expecting, she  had to transition from my ‘baby’ to my ‘little one’, but now I think that we have to transition again to just our little girl.   Oh Sophia, we love you!

And talking about transitioning, we’ve all settled in well here at the Ronald MacDonald House.  Although I was a little disappointed yesterday when I found out that Ava would be moving back into her own room at Sick Kids, and out of step-down where a nurse was always in the room with her.  She does’t need that level of care now that’s not on the IV heart meds, but it was really nice to know that she was never alone,and so I didn’t feel guilty when I came back to the RM house to spend time with the family.

Now I will start sleeping at the hospital again so Ava won’t be alone which is OK, it’s just another change.   And since Ava typically does sleep through the night, if she has had a good day and settles well,  I will come here and sleep at the RM house occasionally.

And it’s a good thing Jason and I weren’t asleep last night at 10:15 when the fire alarm went off here at the house.  Even though the alarm is VERY loud, we had to wake all the kids up and take them outside until we got the all clear (someone had probably just burnt popcorn) and so that was a bit of an adventure.

And miss Ava is doing well… but probably not 100% percent.   She is coughing more again and so today will get her third chest x-ray since we arrived on May 10th and will get yet another nasal swab to rule out any new infection.  I hope it’s not anything new; but if it’s not viral, that means the cough is probably related to her poor heart function and that is not good either.

Today we had our first introduction meeting with the transplant team, so as of tomorrow Ava will get some blood-work and tests to start the process of listing her.   This really seems surreal, and it also means a complete change of care, from the dr’s and nurse practioners that we’ve grown to know and trust, to a completely new team, but again thankfully we’ll just do this one step at a time and I’m sure this new team is just as wonderful.

Well I must go to spend the rest of the day with my family and our little birthday girl.

As always, I’ll keep you posted!

Moving on up!

It was a big day yesterday,  Ava moved out of the Cardiac critical care unit and up to the fourth floor!  It feels so good as it’s a step in the right direction for Ava, going to the 4th floor means we are one step closer to going home.   Here she is, all bundled up like a pea in a pod, ready for her big move….

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The fourth floor is the cardiac floor, and so it’s all kids recovering from heart issues, or kids who are waiting for heart transplants.  It’s definitely more relaxed than the CCU and it’s so nice that we don’t have to call to the front desk and get permission to visit Ava like we had to do when she was in the CCU, now we can just waltz in and visit her anytime.

So in her new digs, there are four children and 2 nurses, it’s called a ‘step-down’ room.  And these nurses are still busy, but it’s a different busy than the CCU, it’s more feeding and changing diapers and monitoring vital signs busy as these kids are mostly awake and need attention like all kids too, so here it seems that they really appreciate when a parent is around and can help with their child.

And Ava is doing so well.  She still has her times where she breathes’ really fast, but her heart rate is good and for the most part her oxygen saturation levels are pretty good. They are still monitoring them and for her a good sat is around 80, but sometimes she is dropping into the 60’s or over-circulating and going into the high 90’s.    This is might be normal for her, but it would be better for her to stay around 80, so we’ll see what they say around that.  Last night when I was holding her she was dropping down, but when I put her back in her bed, she had a little cough and her sats went back up, silly monkey!   But it was nice that she didn’t have to go on oxygen, which is what they do for her when her sats get too low.

So today we will hopefully find out what her goals are,  and what we need to accomplish before we can take Ava home.  I’m starting to get excited about that, so please keep praying that we would keep moving forward.

We also have some more diabetes training for Sarah today – Sarah our five-year old who now checks her own blood sugar!  I’m not kidding!  She pokes her finger and knows how to use her monitor.  She is just something else.

The plan today was to also attend an information session to see about putting the kids in the school here at the Ronald MacDonald House next week, but both Erik and Sarah have sore throats this morning.  I hope it’s just because it’s insanely dry here, and not because they are getting sick.    God has been so good to us so far with our heath, and so I hope that we can avoid bad colds or even strep-throat as this could even jeopardize Ava,  so please pray for this as well.

Well it’s another day here and I gotta get going.   We had a fabulous visit by some of our friends and neighbors yesterday. Such a boost for our morale!   And it just makes me want to go home and see everyone again…  Lord willing it will be soon.  But for now, just grateful that Ava is moving up in the world!

When you can’t sleep, blog…

It’s true, I can’t sleep.  It’s 4:45 am and since I was just tossing and turning (which in itself is a feat when you are 9 months pregnant) I decided it was better to not fight it and just get up and do something productive, like blog… very productive.

So we kinda thought we may have been on our way to Toronto yesterday to get induced to have little Birdy early today,  but when I called yesterday, Mt. Sinai had room for me, but Sick Kids across the street didn’t have a bed for Birdy.   Which is kinda important.  So we were granted a reprieve, and were told to call this morning after 8:00 am to see if a bed had opened.  If it has, we can finish packing and make our way down to TO, if not, we wait again.

It’s hard to wait, but yesterday after church we were prayed for, and I mean, really prayed for.  Our elders and pastors gathered, along with about 40 friends and supporters and I think the heavens trembled.  It was so powerfully amazing, one of our elders prayed and 3 of our pastors and I just wish I could remember everything that they was prayed for.    They prayed for Ava’s healing,  that surgery would go well, that Jason and I could be a testimony to God’s faithfulness, for our relationship, for our other children.   Wow, all I can say, is that if you are going through a trial and belong to a church, please please consider being prayed for like that.    And the strength and peace and that incredible spirit of power that can only come from God was so real and descended upon us… I don’t think I was the only one who was moved.

And we are going forward with all confidence now, knowing that God has a plan for us and for Birdy and we can rest in that and surrender to His will.    And as I said to Jason last night, I know God can heal her and bring her home to us, but on the other hand, I know that if He decides instead to take her home to be with Him, she will be completely and utterly healed, and how incredibly amazing that would be for her.    So incredibly hard for us, but God would help us through,  because God is good.

And man, is he ever carrying us!    I know that any strength that I have is from Him… all the strength that I have is from Him alone.  Praise God!

So yes, I am prepared to wait if that means waiting for God’s perfect timing.  In my own little world, things would happen when I want them to happen, but it’s one more thing that I have zero control over, so I need to just rest in the fact that it will all happen when it happens and try to enjoy just being here for as long as I can.

And with our four very energetic children, it’s not hard.   And because I love the Christmas season so much,  we’ve done so much Christmas stuff together already like making our traditional Christmas cookies together, and decorating the house, and going out and cutting down a Christmas tree, and listening to Christmas music and even attending a Christmas party in our neighbourhood that they held early for us,  that I feel my poor kids probably feel like Christmas should be here any day, but they have weeks still to go.  Which I think is probably good because the excitement of Christmas coming will get them through these first few weeks of us being away.  And then I’m really hoping that maybe they can all join me in Toronto at the Ronald MacDonald house for their Christmas vacation, or at least some of it and then December will be over and if I’m still away, we will worry about January later. 🙂

I’ve been so terrible at taking pictures the past few months, the distracted mother that I am.  But I did bring the camera to our Christmas tree hunting expedition, which we had never done together as a family, but proved to be quite a bit of fun.   Don’t ask me why we are all bundled and William is only wearing a sweatshirt – I guess more proof that I’m distracted, but as that kid moves 100 miles per hour is never cold, I guess it wasn’t so bad.  And he took very good care of little sister that day…

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Erik enjoying some hot chocolate and marshmallow roasting afterwards…

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Sarah, oh my Sarah, she is so close to my heart right now…

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My precious family, my gifts from God.   And as we go forward today and see what God has in store for us, I am so glad that whatever happens we have people who love us and a God that cares for us, and we are truly and utterly blessed.  Even when I can’t sleep.

Amen.

Where things are at

Monday Jason and I spent a long day in Toronto.  It was a very long and full day,  but thankfully there wasn’t much waiting time between appointments so the day itself seem to fly by…  except for the drive home.    We hit rain and traffic and together proved a very long and frustrating combination, but we made it home safely.

We left here at 6:15 am to make it to Sick Kids for our first appointment at 9:30 and actually made it there nice and early.   I think Remembrance Day day had something to do with that as there seemed to be hardly any traffic downtown.   All those bankers and Government offices taking the day off, lucky them.    But it was nice to have the streets clear for a change.

So just after we registered for our echocardiogram – our first appointment of the day – our contact there, Nathalie,   asked if I would mind having an MRI before the echocardiogram.   She had talked to me before about having one for research purposes, but the timing just hadn’t worked out.   So since there was an opening right then I said OK.

And it is a for a good cause.   They are doing research right now on baby’s with Congenital heart defects to see how these baby’s are managing their blood flow  in utero and the only way to really see that is with an MRI.    The information they will glean from it won’t help our baby specifically, but just knowing that the information might help other baby’s down the road makes it worth it.

I’ve never had an MRI before, but as I’m one tired momma I was just hoping it would be a place where I could have a nap.  Those of you who have had one just thought, “ha ha, yeah right”.   But I was hopeful and they did make me very comfortable on my side with pillows and foam until I felt quite tucked in.  But what I did not know that those crazy contraptions make the weirdest  loudest noises one has ever heard.   But I just relaxed, prayed that God would keep me still and let me sleep,  and truthfully I did drift in and out in spite of the noise, so I actually felt pretty rested when I was done.  I also felt rather tousled and sported a great bed-head for the rest of the day, but now I can say I’ve done my part for research.  And the Cardiologist who was over-seeing the MRI showed me some cool pics of the baby after, so that was a neat bonus.

Next it was the echocardiogram and that turned into a bit of an adventure too because Birdy is very comfortable in a position that is NOT helpful for getting clear pictures of her heart.  So our Cardiologist fellow (cardiologist in training) had to call in an experienced tech to help who then in turn just handed it over to Dr. Jaeggi our Cardiologist himself so he could try to get some clear pictures.

The baby’s heart hasn’t improved, but that was to be expected.  He doesn’t think her aortic arch is constricted, which is good, but they will get a better view in three weeks when she is born.  So thankfully the right side of her heart still looks good and she is still a good candidate for surgery afterwards.  Awesome.

So then we met a Dr and nurse practitioner from the newly formed ‘Single Ventricle’ team that will be caring for Birdy after she is born.  We are definitely in good hands!  But they did stress again just how serious of a heart condition she has, but I was comforted in knowing that they have no expectations and just will just track with her at her own pace, even when it comes to things like nursing.   But talking to them was a huge reality check – things are not going to be easy at all.    She is going to have a long recovery time and they basically told us we wouldn’t be home for Christmas.  I already knew that, but it’s not nice to hear it.   It all seems so daunting, but I’m so thankful for a God that keeps renewing my strength when my strength is gone.

And then it was over to the High Risk Pregnancy clinic to meet our OB and see what he had to say.  And the good news is that Birdy is now 6 lbs 7 ounces!  Woo hoo.    She is going to be a good size baby like her siblings, I wouldn’t be surprised if she was over 8 lbs even at two weeks early.  And our OB, Dr. Ryan is wonderful.  He is the man who did the intervention on Birdy’s heart back in August and is quite the miracle worker over at Mt. Sinai with unborn babies.   And since I know that when I’m induced, I’ll be seeing whatever OB is on call that day,  I mentioned to him that I might not see him again, but he said, “You’ll see me again”… and then proceeded to change our induction date to the 3rd instead of the 4th.    Jason and I think he did that so that he will be there for the birth, which would be wonderful.

So now we don’t go back to Toronto until December 2nd where we will stay the night before heading to the hospital in the morning… Lord willing.  We will call on the Sunday to make sure the induction is still a go, and if it is, that means it’s less than 3 weeks away… AUGGGG!!!

I still am having a hard time wrapping my heart around the fact that I have to leave my other kids.   But my brain (and other people)  assure that the kids will be fine.  They are resilient  they will be well cared for and loved,  and they can come and visit, and who knows, maybe even I can come home from time to time.    It’s just my heart that still cries whenever I think of leaving my precious baby’s.  Oh this is not going to be easy.

So please pray for us, we have so many hurdles to jump through, still so much to get prepared for in the next three weeks and pray that even through this time, we can still Glorify God who has a plan for us and knows exactly what He is doing.

So that is where things are at.

A little change…

A little change for a little girl.    Our sweet Sophia’s hair had been getting long… but I wasn’t loving it.    Her hair is fine and thin and her curl was disappearing and the long straight hair just wasn’t doing her any justice when it was down.

So after we got daddy’s approval, we headed down to my friend Angie’s on Thursday for a change.   Sophia went from this…

To this…

We love it.  It shows off her little chin now, some curl has come back and it looks so cute down.

It’s nice what a little change can do.

Our sweet Sophy.

Pumpkin Fun

Wow – its November already, where did October go?    We certainly enjoyed October, with Thanksgiving and the fall leaves and the constant rain… well maybe not the constant rain… but even that couldn’t keep my kids spirit’s down two nights ago… they were all pumped up and raring to go like they are every year.

And of course we had a complete cast of characters all ready to go…  plus another two since we were so happy to have my friend Christa join us with her two kids.

So we had a ninja…

And a Lego ninja… great minds definitely think alike…

our very own Minion…

and a pirate princess who looks so impressed to be getting her picture taken.  Ahoy there matey…

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And two sweet little princesses.

They had a wonderful time in spite of the cold and rain and even though they didn’t stay out as long as in other years, they still brought back more than enough candy as far as I was concerned!

But the biggest hit of the night was Jason’s pumpkins…

I didn’t realize my husband was such an overachiever!  But he did a wonderful job and everyone that came certainly enjoyed them as well!

Here are a few up close..

Darth Vader…

an angry bird…

and my favourite… just a little fuzzy unfortunately, a hello kitty for the girls.

And when did he have time to carve these all?  Well the night before, my dear friend Kim around the corner invited all the neighbours to a pumpkin carving party!   We had a blast!

Kim in one of those amazing people who has the amazing ability to bring everyone together.  If every neighbourhood had a Kim, I would guarantee you would know all your neighbours and have a wonderful time getting together with them, it’s a huge blessing.   And she gives great mom hugs to my kids…

So while I enjoyed my time indoors near the food,  the dads were hard at work in the garage carving those pumpkins…

I know they had a good time.  Well I’m mostly sure, I didn’t spend a whole lot of quality time in the garage that night.   I’m not ashamed to say to say that  I did not touch even the tiniest pumpkin this year, but left it all in Jason’s capable hands.  And look at what an amazing job he did!

So that was the end of October for us.  Full of friends and food and fun times, and now it’s November.   Just over a month to enjoy being at home with the kids before we go to Toronto.  So even though I’ve never actually made a point of trying to enjoy the month of November, I think this year I will definitely try.

She’s growing!

Just a quick little update to say that Birdy is growing like she should and now weights over 4 lbs!   Praise the Lord!   Not that I was worried she wasn’t growing, because I’m certainly growing…. but I think the fact that she only has half of a working heart, plus the fact she has Turner’s combined, can make growth an issue.

But the ultra-sound that we had when we went to see the dr on Friday showed that she is very healthy otherwise and is in the 50th percentile for her size, and I’m so happy.

Just wanted everyone to know.

We love you our little Birdy!

A Due Date and a Pumpkin Latte

We have a due date!    I will be induced December 4 in Toronto at Mt. Sinai and I’m really hoping that will actually be the day because it was my grandma’s birthday.  It’s always kinda neat to have a little tie-in like that.  And when I got off the phone with our coordinator at Mt. Sinai last week after she gave me this date, I was initially very excited,  like I would have been if I had been given due dates for my other pregnancies (hate that going over-due stuff) but then it hit me…  December 4th is when reality is going to be faced, for better or for worse.  It’s rather daunting.

But the day our little girl will be born will also be the day I’ll finally get to  meet our little ‘Birdy’ and for that I am very very excited.    I feel I know her so much better than our other baby’s before they were born, big surprise right?  And she even has a name which the other kids can’t boast of.  They were lucky to be named in the delivery room.  I’m not quite ready to share her name with the whole world yet, there has to be SOME surprise to her birth, but for now we are calling her Birdy and I just feel it’s very fitting – especially considering how active she is.   Although last night after reading Sophia a book about a little penguin,  she was pretty sure we should start calling the baby “little penguin” and that’s what she called her all day today.   Oh well, sigh….

And again,  worry tends to creep its way in when I think about what things will look like when I’m away from my family. So whenever those thoughts and anxiety come, I’m just constantly giving it over to God… which sometimes I have to do 20 times a day, but I’m learning and God is being very gracious to me through all this.

A few posts back I posted a story about God’s faithfulness in the lives of a family who have a daughter with Turners and lost another daughter to a genetic syndrome, it was quite the story.  Well I emailed Sara, who is the mom and she replied and gave me this verse which she has posted up and I just love it.  It’s perfect for where we are at.

The Lord is the One who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed. Deuteronomy 31:8

It just makes me weep (with joy) knowing that God is going ahead and preparing the way for us.  I’m sure our path won’t  be smooth, but He will know what we will be facing with every step of the way, even when we don’t.   How amazing and wonderful.

OK – so yes,  that an update on my other life.  Back to my ordinary life…  Jason brought these sweatshirts home from work the kids last week.

They were thrilled and we of course like to do our marketing bit for the company Jason works for… especially as he has a great job and a great boss.

And in my opinion the kids look so cute all dressed the same, I’m trying to figure out how I can do it more often.  So far nothing is coming to mind.   Cute even with the eye roll…

And then one night last week I got together with a bunch of my friends (who are also all my neighbours – how lucky can a girl get?) for an evening to hang out and enjoy each other’s company while eating yummy things.  My good friend Angie down the street made this… a delicious pumpkin latte..

Which provided me all the caffeine I needed and more to enjoy myself until 1:00 am…  way past my bedtime.    But even though I kinda paid for it by feeling rather tired for the next few days, it was worth it.   We laughed and we cried and after 5 hours of non-stop talking we decided we really should get together more often.    It’s so wonderful to have great friends that only live a few door down from you,  we are definitely blessed to live where we do.

So now this week is almost coming to a close and that means one more week closer to my due-date,  still five weeks and a bit.  And I go visit my OB in London tomorrow to see how little Birdy is doing and if she is growing… I’ll keep you posted!

Staying in the present…

The present.  The present is actually a very nice place,  with a baby still snug and safe inside me, some beautiful sunny September days and family and friends to enjoy it all with.

Here is where I am trying to stay.

The future is rather scary and it actually makes me very upset when I think about it.   And really, it makes sense because God’s grace and peace aren’t in the future yet…   they are right here, right now guarding my heart and my mind.   And so here is where I will stay!  (Or at least try my best)

The warm weather that we had last week brought about another bloom on my hibiscus, such a nice September gift.   I love flowers…

The kids were still enjoying the pool last week, un-deterred by the cool water. (Jason and I actually went for a crazy quick dip last night even though it was only 72 degrees…. brrrrr…)

And we also had another butterfly hatch…

Now I’ll also be honest and confess that the present is also full of kids complaining they have to go to school and we’re already back into scrambling to get out the door in the morning so we don’t miss the bus – even though I was sure this year would be different.

It’s also got a house that needs to be de-cluttered and laundry that never seems to be caught up and an endless to-do list.

But these things are just a part of life and I like this life… and I kinda wish I could stay in this present forever!