Next year, we're starting from scratch, whether the lights are working or not! How annoying when strands of lights burn out halfway through the season (and after all the decorations are already on)!
The dining room tree had strands on the top, middle and bottom go out. The living room tree also has two strands out, but luckily isn't as obvious, thanks to the remaining 10 strands that are still on!
And Nate, trying to figure out our crazy looking tree!
I did something yesterday that I had never done before....I went to a movie. Alone. We're talking me, a bucket of popcorn and a coke, and about 7 other people in a movie theatre. And it was pretty good.
Don is always so good about telling me to 'get out of the house' (in a very good way) when I need a break. Usually that break means going up town, getting groceries, or just wandering around in some stores for a while.
Going to the movie was a very different way to have a break, a last minute thing, otherwise I certainly would have called up some girlfriends and headed out, but really this was OK too!! I laughed; and because I think my emotions were kinda sensitive after a crazy day, I cried just little bit too! But it was all good!
People have been asking how we're all doing, so here it is. We're all doing pretty OK. Me, being the only woman in the house, make up for the boys in the house with the typical motherly emotions! My usual answer to people is that we're trying not to think of it till after Christmas. I can usually say that quite bravely. Then as the conversation continues, and I start to talk about it, I usually get a little ferklempt (how do you spell that?!?).
Nate continues to have really restless nights, so either Don or I end up spending most of the night in his room. But he's stayed clear of coughs and colds, so I say the self (and doctor) induced reduction in our social activities has been worth it!
There's more to say, but for now I'll close.
Here's a pic of the boys, excitedly opening up their passports!! And here's to hoping we'll still be able to go on our little family holiday in the beginning of February....remember those Flyers tickets that Don is super pumped about? Well, hopefully we'll be able to take that little trip before we get the call to head to Edmonton!
Yesterday, while I was at work, Don got the phone call from Variety Children's Heart Clinic regarding Nate's conference.
Here are the basics - more details will come when we know them.
They had a good conference and spent quite a bit of time talking about Nate. They are all in agreement that a Pulmonary Artery banding be done. He is rated at a 2/3 priority, which means the surgery will happen in the next 6 weeks to 3 months. We'll get about 2 weeks notice before the surgery. They expect that Nate will be in hospital (Edmonton) for 7-10 days.
I still have a lot of questions. Some of the information Don was given yesterday contradicts what Dr. Soni told us at our last appointment, so there are still a lot of details to discuss.
Tomorrow we're off to Winnipeg for RSV needles (monthly injection during cold/respiratory season - November to April) which are normally done at BTHC, but due to H1N1 clinics, we'll have to go to Children's in Winnipeg.
Here are the boys checking out the space station on Sunday night. It was visible for about 5 minutes - Brady got quite a kick out of seeing the astronaut's home!
Okay, maybe not the Greatest Day ever....but it was a pretty fantastic day, and it just happens to be a line in one of Chantal Kreviazuk's new songs!
So, while you turn the song on, sit back and enjoy and I'll tell you about a fun day that I had!
On Tuesday I was back to work for the real deal. And I felt pretty good too! This year, our office decided to do a different kind of Christmas party. We omitted the spouses, changed it from a typical fancy dinner in Wpg, and an overnight stay to JUST us girls, during a regular work day, and we went to the SPA!!
It was pretty great. We worked the morning, then went out for lunch together. We got to the spa just before 2, and were pampered till 5:30! We took a little bit of time between treatments for some drinks and snacks. Super fun!
And in a last minute impulse, a dear friend and I decided to go see Chantal Kreviazuk's concert in Winkler. Now here is the most unbelievable and most amazing part. The morning of the concert, my friend went to get tickets....would you believe that we got tickets for.....wait for it....the FRONT ROW!!! And not just front row in the wings.....FRONT ROW - CENTRE!!!
And the concert. Incredible. Chantal has a powerful and moving voice. Amazing strength in her voice. She's pretty funny, too! Her talent on the piano was indescribable! Especially in this venue, where the stage is not even 3 feet away from the front row, it felt like she was singing right to you! Seriously, several times she looked at me....and smiled....AT ME!
A live performance like this is hard to describe and put into words. Just take my advice - if you ever have a chance to see her show....make sure you do!
And a funny thing that happened. We were walking back to the vehicle after the show, and a lady walking in front of us turned around and said I looked just like the opening act (referring to Meaghan Smith, the opening singer). I just had to laugh. Apparently, all it takes is brown hair and bangs to look like her! Her music, accompanied by her husband on guitar (I'm a sucker for husband/wife duos!) was pretty fantastic, too! Loved every song!
So, like Chantal sings in this song....this was a pretty great day!
And thanks Charity Faye Spa, coincidentally, one of the concert's sponsors - and the location of our awesome staff Christmas party! That's another place everyone should visit!
And a final thank you to whomever cancelled their front row tickets the morning of the concert....I'm forever grateful!!!
Nate is having a nap and Brady is watching Mighty Machines, so I've got a few minutes to fill you in!
Yesterday was Nate's appointment with his cardiologist. We left home before 7am, so thankfully Nate slept the whole way in.....or so we thought that to be a good thing. Let me go on.
His PC wanted him to be sedated for this appointment so that they would be able to get very accurate diagnostics. The whole point of the appointment was to put together Nate's case, and then present it to Edmonton, to determine the course of treatment.
So at 9:10am, I gave Nate the medicine (chloral hydrate). Nate's nurse told us this was not a nice tasting medicine! Poor Nate, he had a tough time! He had a bit of a cough, too, so his gag reflex was a bit more sensitive.
Then came the hard part. Usually the medicine is effective in about a half hour, but our Nate, in his usual fashion, fought sleep every step of the way. It took over an hour of him being so upset and crying, then closing his eyes and giving in for about 30 seconds, and then getting all worked up again. Not a fun time. But finally he gave in and fell asleep. Note to self: maybe best to keep him awake on the drive in next time!
Our ultrasound tech was delighted with all the amazing pictures he could take! He just kept taking more and more, since getting shots of this quality would never have happened if he was awake. Even Dr. Soni (his PC) was able to do a thorough physical exam, checking his liver, etc. and was pleased that the liver was not enlarged. They also did and EKG and took his blood pressure.
After review the results, Dr. Soni came in and we talked about where we were headed.
She feels his breathing issues are now heart related
We will increase his meds in the interim
She will present Nate's case to Edmonton on Tuesday, during which the panel will discuss and determine how best to treat Nate (there are 3 different surgery options)
After the panel, Nate will be scheduled for surgery in Edmonton in the next 3-4 months
Interestingly, Dr. Soni told us she had just been in Edmonton at a conference that weekend. One day of the conference had been specifically geared to discussion of treatment of C-CTGA (or L-TGA). She said there are really very few cases that they have treated, and it seems there are differing opinions of treatment.
After Nate woke up, we had a quick consult with physiotherapy for some breathing therapy. We got out of the clinic just after 12.
So, those are the facts! Maybe another day I'll get into how I actually feel about all this!
And since what's a post without a picture....here are my two favorite boys!
I didn't stomp - and I wasn't fierce...if fact I'm quite sure Tyra would not have been impressed. And to be perfectly honest, it wasn't so much a catwalk as it was the tarmac on runway 08 at the Winkler airport.....
But it was fun!! My two super talented and super creative friends met us there to take some awesome family photos. And it was fast....we're talking less than 10 minutes from the first shot to the last! And that just goes to show how good they are!
Because I'm super thrilled about the pics, and because I just can't wait - I thought I'd share just one of my favorites!!
It was Saturday, Don was at work as usual, and I was downstairs playing with the boys. I came upstairs with Nate to change a diaper when I just happened to glance outside the front window. There I saw a group of teens, armed with rakes, tarps and a pickup truck, going to town on our front lawn. Actually, the front was nearly all raked up, when I looked out to the back I saw more people already working there! (For the record, we've got a lot of trees!)
I was totally stunned and pretty much speechless. I went out to the front to talk to one of the guys who was working. He said they were from the Gospel Mission Church, and were just going around town doing these random acts of service. After a few words, he also asked if there was anything they could pray for. Well, at that, I pretty much turned into a blubbering, emotional woman. My apologies to the nice guy who had to see that!
It's just that I had looked at our yard this morning, a beautiful sunny day, and was a little discouraged at the work that was waiting outside for us. It's difficult now with it getting dark right after supper, for Don to get that sort of stuff done after he comes home at 6. His one day off (other than Sunday) is the day that he stays home with they boys and I go to work. And especially the last few weeks while I've been sick, there have literally been no minutes for getting that sort of thing done.
It made me realize again, how, as much as we know God cares about the big things, He cares about the little things too. And He is so faithful, even when circumstances are hard, these amazing blessings He sends our way, makes me take a step back and humbly and gratefully try to comprehend His love for us.
So, thank you to the group of angels, who came to our house and blessed us. You did more than just rake up our leaves. You left us with a gift....your gift of service to us is a reminder and promise of God's unfailing love for us too.
Okay so here we go, my first post on the blog. Unfortunately it's for all the wrong reasons. Carole has had a very tough 5-6 days. She started experiencing dizziness on tuesday which led to a trip to the hospital on wednesday. After spending the day at the hospital, she was allowed to come home but has been almost bed-ridden every moment since. She went to see the doctor again on friday and he mentioned she may have labyrinthitis (inflammation of the inner ear). Symptons include the severe dizziness she's had with every minor movement as well as nausea. There's no pill to take which will cure this in a matter of days. Carole just needs all the rest she can get and hopefully will feel better in short order.
Thank you to everyone who's taken time out of their schedules to help out with meals, the boys and taking care of Carole when I can't be home. God bless you all.
We had 2 appointments for Nate this morning. The first was with a physiotherapist at Children's Hospital. I was completely impressed with her knowledge and treatment of Nate. The issue that we're trying to resolve or at least aid, is the chronic (ongoing) phlegmy (is that a word?!) breathing that he has. When he does cough, it sounds like he's sick - it's really wet and thick sounding. I always feel so bad when he coughs in public because it sounds like he's got a bad cold, sometimes I feel like I get 'the eye' when people hear him, since it does sound like he's sick - but in truth, he's not spreading any germs or viruses.....it's just the way he sounds.
Anyway, our physiotherapist, who deals with cardiac patients, and young ones at that, gave me a lot of new skills to try to loosen up the mucous manually, with different exercises and pummeling. She will also be following up with Nate in a few weeks.
By 11:00 a.m., we were done and walked across the street to the Variety Children's Heart Clinic. Our PC wanted to reassess Nate, after I told her last week of some of the episodes Nate had been having. They did an ultrasound (kinda successfully). She said there was no real change from the last time they did one, however that leakage in one of his valves is severe. She added a new drug, a diuretic that will hopefully help eliminate some of the extra fluids Nate has going on. She also wants to follow up in 4 weeks, to make sure his weight isn't falling behind and to see how the new drug is working. She will also be doing a more extensive and accurate ultrasound, for which she'll give Nate a sedative so that they'll be able to do a proper ultrasound. Then, the plan is to put all his information together and send it to Edmonton, where his treatment and options will be determined by the specialists there.
Our PC didn't want to say anything definite, but did think that with in the next 6 months we may be addressing the valve issue.
That's it in a nutshell - if I think of anything else, I'll add it later! For now, I'm just so thankful for my boys, Don, my family and friends! Blessings like these make Thanksgiving a truly special time! Wishing you and your family a very Happy Canadian Thanksgiving!!
He fell asleep while I was rocking him in my arms!
You have to understand, this hasn't happened for the last 15 days. Any ONE of the above statements would over joy me, but all three?!?! And here's the kicker, this is coming after another long night yesterday. The kind with me awake, listening to his unsettled breathing, counting heartrates, respirations and taking his temperature (I'm always 'expecting' a fever when he has one of these night, indicating something more going on) and thankfully not seeing a high temp. This also comes after a week of feeling kinda spent. Dealing with a head cold myself, and going solo with the kids for the last 2 evenings.
So, for now I am pumped! Getting out some snacks, putting my feet up and enjoying the moment!
These came in the mail this week, and that's all it took to light up my beloved's eyes!!
We haven't taken a family trip or holiday farther than 3 hours away since Nate's been born. Hopefully by February, a road trip will be more or less feasible and traveling in a van will be a more or less positive experience! (Right now, a trip to Winnipeg is just about the limit for happy passengers!)
Since I last wrote, we've had some better nights and some worser nights. But in the midst of that what has touched me more, is the care, love and concern that has been shown to us in the last few days. Notes of encouragement, words of compassion....makes me emotional just thinking about it.
Don has been a huge help the last week, (and always!) during the nights and going double duty by being Mr. Mom (otherwise known as DAD!) to the boys in the morning before going to work. He is right now enjoying a much deserved Big Boys Night Out in Winnipeg, watching the Oilers take on Tampa Bay Lightning!
Today I took Nate to see our family doctor, and to say the least it feels complex right now. If you want to know details, read on - if not (and I understand!!) thanks again for praying for us!
1) Our cardiologist - I'll abbreviate with PC, for Pediatric Cardiologist, wanted Nate to see the pediatrician - abbreviate with ped, to discuss possible inhaler treatments for Nates lungs. Since our ped. works out of Wpg and only comes here once/month, we saw our family doctor in the meantime.
2) Our family doctor did prescribe an bronchodilater (not a steriod) inhaler. Two tricky things related to that: First, this dilater which would help to open the bronchioles, also raises the heart rate....something that as a heart baby, we're already dealing with. And Second: The lower lobes of his lungs sounded clear to her, leaving her to believe it's more of an upper respiratory issue. It's a risk/benefit balance here....maybe using the puffer very moderately will give Nate just enough that he needs to be able to clear (expectorate) whatever is causing this issue, without raising his heart rate.
She still would like us to confer with the ped. about using the inhaler, but we did pick one up in the time being....but I have not used it yet.
3) She will refer us to physiotherapy to see if we can do some manual loosening up (ie. pummeling his back and under the arms) in that area. We have private insurance so that part will at least be covered!
4) If there was anything she wanted me to take away from this appointment, it was to take all possible measures to protect Nate against H1N1. She told me matter-of-factly, that if Nate would be infected with this virus, he would end up on a ventilator in short order.
She expects Nate to get the immunization. She also wants me to limit any possible exposure, once that season hits. Specifically, she told me for Nate: no church, no grocery shopping, social activities with people in our house, or taking him to others.
The issue is that the onset of H1N1 is ACUTE with sudden onset. That means, we could be interacting with someone in the morning who is by all accounts healthy, and by that afternoon, they could be showing signs and symptoms of the virus. By that point, Nate could have already been infected.
It's alot to take in and consider. However, she doesn't want me to just consider...these are Dr.'s orders, and she said I could lay all the blame on her for for whatever I may encounter by adhering to this. She is genuinely concerned and wants me to be completely informed and educated.
As an aside, Nate's heart rate was normal at this appointment! His iron was up only 2 points to 102 since starting on his iron supplement 2 months ago.
Sorry if this is too wordy, but it just feels like I got alot of information today. I think I summed up most of it!
Thankfully Nate has so many happy moments in each day, which allows us to forget about some of this other stuff. He's such a ton of fun, makes us laugh, and still loves to cuddle! We'll continue to pray for better sleeps for him, and for clarity on all these other matters!
I ate cake before 9am this morning. Farmer's Brownies, to be specific. I guess today, my cake was my consolation!! Ever felt like that?
We've been having some exhausting sleep and night issues with Nate for the last few nights (and by that, I mean bigger issues than just waking up a couple times a night!). It's been tiring physically and emotionally. I'm sure I'm not alone in this feeling....of just not knowing what to do and feeling helpless that you can't even comfort or soothe your own child.
I know there are always teething issues that all babies will deal with, and I can only wish that was all it was. But there I was last night lying beside a very restless Nate....trying to get an accurate reading on his heart rate (around 150 bpm, from what I could tell), and listening to his breathing which was anything but clear and steady. In my mind, trying to come up with a composed email to send to his cardiologist in the morning.
Restfull, it was not!
But like our pastor said in church on Sunday, quoting Chuck Swindoll: "Life is 10% what happens to us, and 90% how we respond to it."
Well, I guess in the grand scheme of things, responding to this with my cake this morning is perhaps acceptable, if not somewhat detrimental to my own dietary goals :)
And after going for a 3pm drive this afternoon to finally getting him to fall asleep for his only nap of the day (and after a good cry myself), things look a little brighter. Since the pediatrician that we see only comes out once per month, we'll be seeing our family doctor this Thursday about his breathing and lung issues. Then we'll see where we go from there!
To quote an unknown source: "Whoever says they sleep like a baby, probably doesn't have one!"
The weekend at the lake was FABULOUS! It was Hot, Hot, Hot, but still cooled down nicely each evening. The younger generation played non stop all weekend, and us older folk took it easy and enjoyed the beach, campfires, fellowship and on and on!
I always thought that "Book Club" was all about the food.....after the first meal of the weekend (a buffet of bacon, eggs, fresh muffins, fruit - I could keep going here!) I was quickly reminded that it's camping.....it's really all about the food. And then croissant sandwiches at lunch...
One of the super hot afternoons led to a water fight between Grandpa and the younger ones. It was quite hilarious to watch!! Not sure who was having more fun!
Best toy that we brought along for Nate....this and the dump trucks, loaders, etc.!
Saturday evening was capped off with fireworks, courtesy of the campsite next to us, and a special showing of Horton Hears a Who, on the BIG screen!
OK, this picture is not about me, but I laughed out loud when I saw it the first time. Don had the camera and I told him to take a picture of the 3 of us. Hmmm.....I see a donkey's ear, and an inflatable activity toy.....but I seem to be missing the other 2 faces that were to be in the picture!
But the next morning, he did capture some better shots during the bike ride with Brady!!
I have to say, I'm extremely thankful that I am married to a husband who helps out during the days as well as the nights.
Case and point: Last night Brady was awake till 3:30 and then finally fell asleep. Nate on the other hand, woke up at 6:00 this morning. If it was just me alone doing 'night duty', I think I may be a little cranky this morning. Thankfully Don was on 'Brady Duty' while I took care of Nate.
It makes me think about single parents, or families in which one parent works nights. I feel more compassion and and have more understanding for them, while it also makes me feel blessed to have Don at home to help. Even if it does take some nudges, kicks, etc. to wake him up and inform him of the issues going on across the hall in Brady's room!
Just got in about an hour ago - got both boys to sleep (why couldn't they fall asleep on the drive home?!?), and now it's time for an update!
Well, Nate still despises strangers and doing strange things. Even though the staff at the clinic all dress in regular clothing (no "White lab coat Syndrome" to blame it on) and are all super friendly people, he just hasn't taken a liking to them!!
It began with the routine, and might I add, completely painless, height and weight measurements. Yeah, it didn't go well. I did have my ammo with me (a new spinning laser ball toy and SUCKERS!) but I wasn't about to use them up on getting weighed when I knew the ultrasound was coming up!
So, when we were brought to the examination room, where we usually go after all the tests, I started to get a funny feeling that they weren't going to attempt the echo today.
Dr. Soni did the physical exam and said based on what she heard and felt (his liver was not enlarged) and his weight gain, she could conclude that he was not in heart failure. In that case, she was comfortable not doing any further testing at this appointment, given his temperament the echo would probably not be of good quality.
No change of medications right now. He's still not big enough to switch to the other med, which would be a twice a day dose. So, we'll keep on going with midnight medicine dose, and hope at the next appointment - in three months - that he will have gained enough weight to switch meds.
She was also more concerned with the sound of his lungs, audible without the stethoscope, so we'll be looking into treating that when we see his pediatrician next.
After Nate's appointment we made a stop at the NICU across the street to see a very teeny, precious baby, who chose to make an appearance into this world 3 months early. She's not quite 3lbs, but she's using every ounce she's got to show the world what she's made of. One tough cookie!! We had a nice visit with her mom, I'd call her a SuperMommy!!! Please keep baby Kiera and her mommy and daddy in your thoughts and prayers.
Thanks for your prayers and encouragement for our Nate. We feel blessed by all the people who care so deeply for Nate and the rest of our family.
And a super huge thanks to Bonnie, for letting Brady spend the 'funnest' day ever at your house! And for feeding us supper!!! And for the Costco run....it was really good retail therapy!! Love ya so much!!!
Apparently not here in the 'blog world'. Just seems there are too many things to get done and never enough hours in a day. Thanks to my faithful blog readers for always checking in....sorry I haven't been giving you much to read lately!
One year ago, we were just get used to the whole idea and implications of Nate's heart diagnosis. Between the different appointments, tests, medications, etc., I have to say it's been a learning curve. There were some rough times during the winter, but we've been so blessed in the great summer season we've had. He's stayed relatively healthy with only minor issues popping up.
This Friday, we'll be seeing his pediatric cardiologist again. Always a mix of anticipation and nervousness. At our last appointment, she said the determining the course of treatment and timing of treatment would be "tricky". The echo that he had was also a bit of a disaster, with Nate upset and wailing through the whole thing....according to the report, an "abbreviated...technically difficult...and limited" study. I desperately want the diagnostics to be clear and useful....and hope that we don't have to deal with sedation or anything else to be able to get good results from these tests.
So.....here are our prayer requests for the upcoming appointment:
1.Wisdom for every medical personnel involved in Nate's care and treatment.
2.Co-operation on Nate's part for all the different examinations.
3.A healed heart!
And since no blog post is complete with out some pictures...
The joys of having a 3 year old who picks out his own clothes.
He thought they were shorts or maybe some 'man capris'....but indeed
Here are three things that happened yesterday that made me go "huh?!?
Took the boys to get passport photos taken. Brady's was no problem. Nate was also great for the first few minutes, totally still and quiet, looking straight at the camera. The only problem? Requirements are that the lips need to be touching each other. HUH?!? Try getting a 15 month old to close his lips.
Now I've been chased by a cow in Burkina, and the other day that nice black lab came up from behind me and followed me, but a tractor baler??? I was out enjoying a run on the south dike in Winkler (bordered by fields), when I heard something rumbling behind me. I checked the skies, since earlier there had been a spray plane one field away. Nope, nothing up there....but a shoulder check behind me found a large tractor with some kind of bale loader trailer, not even 100 meters behind me, barreling towards me at what seemed like break neck speeds! HUH?!?! I ran into the ditch, and let him pass.
Then, on my way back, along the same dike path, I saw a dad and his kids doing some bow and arrow target practice against some bales right beside the path. HUH?!?! With a chuckle, I shouted out "Am I safe to run by?", he laughed too, at my hesitation and waved me on.
Well, that's the lighter side of life. I'm not complaining!
I made a new friend, of the canine variety this morning.
While Don took the boys to the airport fly-in, I decided to enjoy a little 'me time' and get a run in. I was about a mile in, along the dike on the west side of town when a black lab came running along side me. After recovering from the spook, and realizing that this dog didn't have any bite in him, I was fine. I just kept on trucking, hoping the dog would loose interest in my journey and return home.
Well, a mile passed, and another and he was still right beside me. Then I started to get annoyed. So far, I had been on what could be considered more of a rural route, but as I rounded the corner on mile 3 into the residential area, the dog showed no signs of going home.
And right through town, he followed me. To all the vehicles who passed me, muttering under their breath, "Why can't people keep their dogs on a leash", and to the others who are right now composing a letter to the editor regarding the irresponsible dog owner who let her dog run loose beside her along the road, I say this:
IT'S NOT MY DOG!
Well, he followed me right into our yard, a nice friendly dog. A collar, but without any tags, ID or tattoo.
We're still waiting for the city's animal control guy to come pick him up and bring him to the shelter, where hopefully his owner's will check in the morning and be reunited!
The last two weeks has been a flurry of awesome fun! It's been full of family times - play time, meal time, and plain old get-togethers! There are 11 grandchildren in the family, ranging in age from 1 - 17, although 8 of them are 6 and under! And we were all together....that hasn't happened for a long time!
So, needless to say, I've been spending little time in front of the computer, and even less time behind a camera. It's been more about being in the moment!
In other news, Nate had his first major spill involving a glass shelf and his head. Thankfully, his angels were watching, and it wasn't more serious!
He also got his first haircut. Cried through the whole thing. Really wasn't worth it, but it needed to get done. Why do we always wait so long for that first hair cut?!?
Anyway, here's the before and after!
Enjoy your day! I'll be back here a bit more regularly now!!