Things with Nate started getting a bit unsettling a week ago. He had been recovering well from his collar bone injury. But suddenly his energy level and disposition sort of tanked. Tuesday and Wednesday I was noticing an increase in his heart rate and respirations. I consulted with one of the great ped cardiology nurses, and concluded he was most likely fighting off a virus of some sort. His heart rate, while high, wasn't an SVT (which he's never had, anyway).
He continued on having episodes of acting quite lethargic, then times when he would act more like himself. However, his appetite was horrible. I would estimate he was eating about 1/4 of his usual amount, and often simply refusing to eat. He complained on and off about his tummy hurting, and on Saturday, said his ears were hurting. We started on some Advil, and noticed improvement for several hours after each dose. I had to work hard for every bite of food he got in him. Tough to see him like that - just refusing food.
Today we had our follow up with cardiology. Turns out the gradient across the PA band is still showing the same pressure as last time, 6 weeks ago (it had dropped from a 'getting better' reading of 65 to the same pre surgery reading of 35). So, now the question to the surgical team is why and what to do next. Cardiology conferences each week with the surgical team, so she will present Nate's case, hopefully next week Tuesday. There, they can discuss some preliminary ideas (valve repair/replacement - uncertain with his transposed anatomy causing that valve to be irregular to begin with; or heart transplant), and take it from there.
They weren't equipped to check his ears at this clinic, but together we did attribute his weight loss and lethargic behavior to this (whatever it is that he's fighting), and not necessarily his heart. I was disappointed we couldn't check it while we were there, because I'd really like to know if his ears are indeed the problem, and whether or not it's a viral or bacterial issue. We drove straight home, prepared to get him to the clinic or urgent care, but he fell asleep as soon as we got home, and slept for 2 hours - which he needed. We'll see what the morning brings, and take it from there!
Thank you for your prayers. I couldn't have been happier when he ate some food willingly on the drive in this morning. And even though upon arrival at the clinic, it was loud and clear that he had arrived - and the receptionist actually called him Tantrum Nate (!) he did settle down VERY nicely, and was fabulous for his echo and exam!!!! And who would have known that the steak knife I had in the van to cut the pear for him while driving in, would help out a mom in the parkade at the hospital, who had just arrived from the airport, and didn't have anything to cut the plastic straps off of the stroller from their flight!
Monday, June 18, 2012
Tuesday, June 12, 2012
Top Secret (not really) Recipes Revealed!
Got your attention, hey?? :) They are definitely not top secret (I found them, didn't I!?) but they are too good not to share!
A few weeks ago, a bunch of very cool ladies got together to celebrate the upcoming marriage of my niece. We had a great time showering her with gifts and having some fun along the way! And you know how those things go, it's not complete with out a fantastic spread!!
I thought I'd share two of the recipes. I've been emailing them to a bunch of friends anyway, so figured might as well document them here!! The cheese cakes were my sisters' specialty, so you'll have to sweet talk her into divulging them!
The first recipe is a great appetizer! It's a pretty easy recipe, and has a ton of variations. I've seen it called Texas Caviar...Cowboy Caviar....and I'm sure Menno Caviar would pass as well!! So take this recipe and do with it what you'd like!! Add spicy peppers and jalapenos or chilis, garlic or other spices if you like, or omit some things that you don't want! It's nice to make this at least a few hours before and put it in the fridge for the flavors to blend. You can even do it the night before. But then I would not add the avocado until closer to serving time.
Here is the basic recipe.
Texas Caviar
1 red and yellow pepper, finely diced
1 or 2 sticks of celery, finely chopped
1/2 red onion, finely diced
1 tin black eyed peas, drained and rinsed
1 tin black beans. drained and rinsed
1 tin corn
a couple of roma tomatoes
1 avocado diced (add closer to serving time)
cilantro (use as much as you like, the recipe called for 1 bunch, but I thought that would have been way too much, I used less than 1/4 bunch, chopped.
juice from one lime
1/4 cup Italian dressing
salt and pepper to taste
Mix all together. We served it with blue corn chips which was an awesome flavor, but you could use any taco or corn chip, etc.
And a little something sweet! These are SO delicious!! I was curious about the addition of coffee, and was told that it helps bring out the flavor of the chocolate, which is exactly what it did!! So good!
Rolo Cupcakes
1 Devils food cake mix
1 pkg instant chocolate pudding
1 cup sour cream
1 cup oil
4 eggs, lightly beaten
1/2 cup warm water or coffee
1 tsp vanilla
Frozen rolos
Beat all of the ingredients together (except the rolos!) for 3 minutes. Scoop into cupcake liners. Push one rolo down into each cupcake. Bake for 18-22 minutes at 350. Once cooled, frost with the following caramel buttercream.
Caramel Buttercream
2 cups unsalted butter
2 tsp vanilla
2 tsp sea salt
1/3 cup caramel (the ice cream topping variety)
1 1/2 lb icing sugar
Cream the butter. Add vanilla, salt and caramel and mix well. Add the icing sugar one cup at a time. If desired, you can add more caramel as wanted for flavour. Frost the cupcakes and top each one with another rolo! And try not to devour them all!!
Monday, June 11, 2012
Peace through His Word
This, too, Lord?
When you pass through the waters, I will be with you;
and when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned;
the flames will not set you ablaze.
For I am the Lord, your God.
the Holy One of Israel, your Saviour. (Isaiah 43:2,3)
Praise be to the Lord, to God our Saviour,
who daily bears our burdens. (Psalm 68:19)
Strength and courage for the everyday.
I have learned the secret of being content in any and every situation,
whether well fed or hungry,
whether living in plenty or in want.
I can do all everything through him who gives me strength. (Phil. 4:12,13)
Be strong and courageous. Do not be terrified;
do not be discouraged, for the Lord your God will be
with you wherever you go. (Deuteronomy 31:6-8)
It is all part of YOUR plan.
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth.,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be. (Psalm 139:12-16)
"For I know the plans I have for you," declares the Lord,
"plans to prosper you and not to harm you,
plans to give you hope and a future.
Then you will call upon me and come and pray to me,
and I will listen to you.
You will seek me and find me when you seek me with all your heart." (Jeremiah 29:11)
Fill me.
May the God of HOPE fill you will all JOY and PEACE
as you TRUST in Him, so that you may OVERFLOW with HOPE
by the POWER of the Holy Spirit. (Romans 15:13)
I pray that out of His glorious riches he may strengthen you,
so that Christ may dwell in your hearts through faith.
And I pray you, being rooted and established in love, may have power to grasp
how wide and long and deep and high is the love of Christ,
and to know this love that surpasses knowledge -
that you may be filled to the measure of all fullness of God.
Now to Him who is able to do immeasurably more than all we ask or imagine,
according to his power that is at work within us,
to him be glory in the Church, and in Christ Jesus
through out all generations, for ever and ever. Amen. (Ephesians 3:16-21)
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go, for to you I lift up my soul. (Psalm 143:8)
I pray for healing.
"He heals the brokenhearted and binds up their wounds." (Psalm 147:3)
"For with God nothing will be impossible." (Luke 1:37)
"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." (Hebrews 4:16)
When you pass through the waters, I will be with you;
and when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned;
the flames will not set you ablaze.
For I am the Lord, your God.
the Holy One of Israel, your Saviour. (Isaiah 43:2,3)
Praise be to the Lord, to God our Saviour,
who daily bears our burdens. (Psalm 68:19)
Strength and courage for the everyday.
I have learned the secret of being content in any and every situation,
whether well fed or hungry,
whether living in plenty or in want.
I can do all everything through him who gives me strength. (Phil. 4:12,13)
Be strong and courageous. Do not be terrified;
do not be discouraged, for the Lord your God will be
with you wherever you go. (Deuteronomy 31:6-8)
It is all part of YOUR plan.
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth.,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be. (Psalm 139:12-16)
"For I know the plans I have for you," declares the Lord,
"plans to prosper you and not to harm you,
plans to give you hope and a future.
Then you will call upon me and come and pray to me,
and I will listen to you.
You will seek me and find me when you seek me with all your heart." (Jeremiah 29:11)
Fill me.
May the God of HOPE fill you will all JOY and PEACE
as you TRUST in Him, so that you may OVERFLOW with HOPE
by the POWER of the Holy Spirit. (Romans 15:13)
I pray that out of His glorious riches he may strengthen you,
so that Christ may dwell in your hearts through faith.
And I pray you, being rooted and established in love, may have power to grasp
how wide and long and deep and high is the love of Christ,
and to know this love that surpasses knowledge -
that you may be filled to the measure of all fullness of God.
Now to Him who is able to do immeasurably more than all we ask or imagine,
according to his power that is at work within us,
to him be glory in the Church, and in Christ Jesus
through out all generations, for ever and ever. Amen. (Ephesians 3:16-21)
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go, for to you I lift up my soul. (Psalm 143:8)
I pray for healing.
"He heals the brokenhearted and binds up their wounds." (Psalm 147:3)
"For with God nothing will be impossible." (Luke 1:37)
"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." (Hebrews 4:16)
Wednesday, May 23, 2012
The Misadventures of Nate the Great
Just when you think your plate is full....well, just push everything over a little and you'll find you can squeeze a bit more on the side! Now, this would be fine if we were talking literally, and you were scooping on another serving of verenki or something! Unfortunately, in our case, we're adding on something a little less savoury.
This afternoon, Nate took a fall off of his chair while finishing up lunch. He landed smack on the side of his body. To make a long story short, he broke his collar bone.
He's doing pretty well, but it kind of changes every part of the day to day. Right now, he's sleeping on the recliner. He tried lying down in bed, but that was obviously causing him pain. The injury is on his right clavicle which is rendering his dominant hand useless right now, being in a sling. It feels similar to how life was post-operatively, the careful way of picking him up 'scoop style', feeding him his meals, and just being wary of his every move. I'm told these things can take up to six weeks to heal, but I'm counting on the resiliency of a child, and the power of prayer to the Great Healer, to get him back to his regular self.
This afternoon, Nate took a fall off of his chair while finishing up lunch. He landed smack on the side of his body. To make a long story short, he broke his collar bone.
He's doing pretty well, but it kind of changes every part of the day to day. Right now, he's sleeping on the recliner. He tried lying down in bed, but that was obviously causing him pain. The injury is on his right clavicle which is rendering his dominant hand useless right now, being in a sling. It feels similar to how life was post-operatively, the careful way of picking him up 'scoop style', feeding him his meals, and just being wary of his every move. I'm told these things can take up to six weeks to heal, but I'm counting on the resiliency of a child, and the power of prayer to the Great Healer, to get him back to his regular self.
Monday, May 7, 2012
Our Day
Thanks for each one of your prayers today. They were felt and answered in different ways.
The drive in was great until we got grid locked on Route 90. It took 45 minutes to travel less than 2 km's between Corydon and Academy. SO frustrating. And I hate being late. That's why we always add in a good 1/2 hour of grace time anytime we travel in for an appointment. Well, we used up that grace time, and more. But the clinic was very understanding, and had some other people who were stuck in the same traffic. And the lemon poppyseed bundt cake I brought for them helped, too!
The awesome news is that Nate did pretty great! There was a little bit of resistance, but nothing that I couldn't talk him through. I didn't even have to pull out the new toy I had bought for this purpose....the gummy bears seemed to have done the trick this time around!
The news that was a bit harder digest is what the echo showed. Good new is that his liver is normal and he is not showing signs of heart failure. Bad news is the gradient, which 4 months ago finally showed it's first increase and improvement since surgery 2 years ago, has decreased significantly. We're back at the numbers we were before surgery. The band hasn't changed, still showing the same diameter and position, so it isn't a problem with the band, or that redoing that banding surgery would correct.
What comes next? Well, to start, we're upping the lasix (diuretic) to twice daily. We'll try that for a month and go back for another echo on June 18th, to see if that gradient number is staying put. If there is no change, Dr. Soni feels that intervention is required. And this is the tricky part with Nate's L-TGA (or Cc-TGA), valve replacement or repair really isn't going to be an option. So, that leaves us with Transplant.
To me, right now, that's a scary word. A word that if I allow myself to go there, even for just a minute, it overcomes me. So, I try to think only of our God who is stronger. Who is greater!
I'm sure I'll be back soon with more, but for now, I hope this gives you the info to update you. It's the best I can do with just a few hours to process this ;). Thanks for praying us through this day! And thanks to my mom for company for the drive and help along the way!
The drive in was great until we got grid locked on Route 90. It took 45 minutes to travel less than 2 km's between Corydon and Academy. SO frustrating. And I hate being late. That's why we always add in a good 1/2 hour of grace time anytime we travel in for an appointment. Well, we used up that grace time, and more. But the clinic was very understanding, and had some other people who were stuck in the same traffic. And the lemon poppyseed bundt cake I brought for them helped, too!
The awesome news is that Nate did pretty great! There was a little bit of resistance, but nothing that I couldn't talk him through. I didn't even have to pull out the new toy I had bought for this purpose....the gummy bears seemed to have done the trick this time around!
The news that was a bit harder digest is what the echo showed. Good new is that his liver is normal and he is not showing signs of heart failure. Bad news is the gradient, which 4 months ago finally showed it's first increase and improvement since surgery 2 years ago, has decreased significantly. We're back at the numbers we were before surgery. The band hasn't changed, still showing the same diameter and position, so it isn't a problem with the band, or that redoing that banding surgery would correct.
What comes next? Well, to start, we're upping the lasix (diuretic) to twice daily. We'll try that for a month and go back for another echo on June 18th, to see if that gradient number is staying put. If there is no change, Dr. Soni feels that intervention is required. And this is the tricky part with Nate's L-TGA (or Cc-TGA), valve replacement or repair really isn't going to be an option. So, that leaves us with Transplant.
To me, right now, that's a scary word. A word that if I allow myself to go there, even for just a minute, it overcomes me. So, I try to think only of our God who is stronger. Who is greater!
I'm sure I'll be back soon with more, but for now, I hope this gives you the info to update you. It's the best I can do with just a few hours to process this ;). Thanks for praying us through this day! And thanks to my mom for company for the drive and help along the way!
Sunday, May 6, 2012
FOUR
Our little man turned 4 last week. A fun day for all involved!
Even strawberry jam toast seems special for breakfast
when you're sitting on the birthday balloon chair!
There were a few moments of stress, when at 3:00 he decided he no longer wanted his Flyers vs. Sharks cake.....suddenly a construction cake is what was all that he wanted! Oh yes, there were tears involved! Somehow, in the end, his hockey cake met his approval.
And what is just as good as Lego?? Cold, hard cash is!
Just a note, tomorrow is another trip to see his cardiologist. Please pray for Nate! I sure would love for this appointment to finally be a good experience for him (and us!). Thanks in advance!
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