Happy 40th Birthday Graham!!!

Happy 40th Birthday Graham!!!

Graham had logged a few extra hours at work so he could take this afternoon off.  We're heading to Stratford to see The Three Muskateers.  Isaac is with Grandma and Grandpa and we'll have nursing until 9:00 PM.  Time to celebrate and run out the door!

Thanks for your prayers!

Blessings,

Elizabeth

Celebrating tomorrow

I thought the OT and speech and language pathologist would be impressed with Josiah's eating and drinking and they were.  They watched him pick up food and eat happily and drink readily.  They said many kids they work with take a year to learn to drink the amount that Josiah drank at one time.  Thank You Lord!  We'll just keep working on soft foods right now.

The local nurse practitioner came but she said that changing Josiah's diuretics was beyond her scope.  She thought it was good timing that we are going to SickKids next week.  I emailed our contacts at SickKids and they said that our cardiologist and a dietician will be able to help us with our questions.  The imaging should show if there is any sort of obstruction causing his face to be more swollen.  I need wisdom to know if I should reduce his fluid intake at all - either what he's taking orally or by NG tube.   I want him to keep practicing and improving his oral intake but I don't want to cause increased swelling over the next few days.  There are still four full days of feeds before we go to SickKids and that's a lot of extra fluid than he's used to. 

Our regular nurse did a 12-hour shift today.  There was a meeting at our home tonight so it helped to have our nurse here while we were getting ready.  Thankfully both boys were calm as it's harder to hear from one room to another with the air conditioner and fans going.

Isaac's current favourite phrase is, "All by myself."  He's also told me a few times, "I want to be upset."  His Grandma told him this morning that she'd gone to the library and took out a book about walking.  He found this quite funny and kept repeating it and thought he would tell daddy about it. 

Graham and I will be celebrating tomorrow so I need to get some sleep.   

Thanks so much for your prayers!

Blessings,

Elizabeth

Hebrews 12:28-29
Therefore, since we are receiving a kingdom that cannot be shaken, let us be thankful, and so worship God acceptably with reverence and awe, for our “God is a consuming fire.”

Drinking!

I hope I have not permanently lost any brain cells.  For the second day in a row I forgot that someone was coming and I was sleeping when they arrived!  Wednesday is the day that Isaac's volunteer from Hospice comes in the afternoon.  This time my mother-in-law was not here to wake me and I think my nurse must have thought I needed the sleep.  I didn't get up until half an hour after she arrived!  How embarrassing!  She said she didn't mind at all as she was able to spend time with Josiah and get to know him a little.  She commented on how good he looked.  For the second day in a row I was told about Josiah's long fingers.  I hadn't noticed.  I woke Isaac up and he was quite excited that his volunteer was there. 

These days I usually wake up to Josiah's oximeter going off in the morning.  He likes to pull off his sock in the morning and then pull of the sensor.  This morning he put on his DVD player with his toes as it is attached to the crib rails.  He puts his head as far back as it can go to look for the tubes and wires at the top of his mattress, hoping no doubt that he can reach them.

One time this morning I went into his room to find his nasal prongs out.  He looked so happy so I put the oximeter sensor back on his foot, hoping that his oxygen levels would be alright without the oxygen but it started at 62 and went down from there so I thought I should give him back his oxygen.  I used the opportunity to change his nasal cannulae and tapes.   

Once again, Josiah ate very well all day.   The big excitement for me was that he drank larger amounts from a medicine cup.  He had at least 15 mLs of drinkable yogurt at breakfast and another 25 mLs at both lunch and dinner.  I'm looking forward to him drinking all of his liquids instead of most of them going down his NG tube.  Of course, that would be a lot of work for him.

Every time I look at Josiah now I think that's he's so big.  He just seems to look so much bigger these last few days.  

Josiah will have a non-sedate echocardiogram and a CT scan at SickKids Hospital next Tuesday, June 4.  We'll know the results before we leave the hospital.  I also found out today that he'll need an IV for the CT scan.  I assume they will use it for contrast dye.  When Josiah was rushed to our local hospital at the beginning of this month, they tried to get a line four times but were unsuccessful.  I'm praying it will work the first time.   

I like this quotation that I read tonight:  "Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day.  Either He will shield you from suffering, or He will give you unfailing strength to bear it.  Be at peace, then, put aside all anxious thoughts and imaginations, and say continually: 'The Lord is my strength and my shield; my heart has trusted in Him and I am helped.  He is not only with me ... but in me ... and I in Him.'" - St. Francis de Sales

Wow!  If only I knew how incredibly blessed I am ... and lived like it.  I have the opportunity to walk with God every day.

Thank you for your prayers!

Blessings,

Elizabeth

Psalm 63:7
Because you are my help, I sing in the shadow of your wings.

Progress

My mother-in-law was here today.  I had a lovely nap and forgot all about the case manager who was coming to meet me.  It's a good thing my mother-in-law was here to answer the door and wake me up.  It was nice to meet the case manager and we had a good chat while watching Josiah show off for her in the living room.

I don't think I've ever seen Josiah as active as he was this afternoon.  He was lying on his mat and turning himself around (not over) and grabbing at things and then he was in his Bumbo for a long time.  Today is also the first time I've seen him pick up food from his tray and put it in his mouth and eat it himself.  Yeay!!!  He tuckered himself out before his physiotherapist showed up so he wasn't quite as productive for her but she said his chest sounded good.  His visiting nurse was here this morning and she said his lungs sounded clear for the first time since he returned from McMaster.

Isaac telling us he has a big tummy

The nurse practitioner will come on Thursday.  I haven't thought much about Josiah's weight gain but our shift nurse pointed out that it's actually quite concerning for a heart baby to gain too much weight.  It's harder on his heart and can make it more difficult to breathe.  I'm praying that God will give the nurse practitioner wisdom to know how to help Josiah.  Our wonderful dietitian is confused about Josiah's feeds and the concentration of his formula.  It's confusing to know how much weight Josiah is gaining due to his feeds and how much is just fluid retention.   We definitely need wisdom and we know Who has it to give.

We heard this week that we've been approved for nursing hours through Graham's insurance.  It was a lovely surprise.  Thank You Lord!  We want wisdom to know when to use these hours.  We'll prioritize the weekends as they are usually somewhat stressful.  The question will be whether or not nurses are available for these shifts.

Thank you so much for your prayers!

Blessings,

Elizabeth

John 14:6
Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me. ..."

 

 

Chowing down

Josiah had some wonderful giggles today.  They are always a lovely gift.

I'm writing this later than usual as I needed to go grocery shopping tonight and Josiah took a long time to fall asleep before I left and he just woke up crying a few minutes ago.  All is quiet at the moment except for the oxygen concentrator heating the hallway and the air conditioner keeping Josiah's room cool enough.

Isaac spoke to me today about things that Josiah could do when he gets bigger.  Tonight I prayed with Isaac that Josiah would learn to walk.  That would be amazing!

Josiah is chowing down on food these days.  He is making up for being cut off of the food while he had his cold.  The dietician was here this morning and unfortunately Josiah gained 35 grams a day since last Tuesday.  He should gain 8 grams a day.  He's looking puffier so a bunch of that weight gain may be fluid.  I emailed our local nurse practitioner today to see if she can visit Josiah so we can discuss if he needs his diuretics increased.

I spoke with Josiah's cardiologist at SickKids today.  One of our nurse practitioners there is setting up an appointment for Josiah to have a non-sedate echocardiogram and a CT scan.  I'll let you know when it's scheduled.  They are hoping they'll be able to see what's been happening with Josiah's pulmonary veins without doing something more invasive that requires sedation and anaesthesia.  I think we'll need a miracle to get good images.

I ordered more medication today and I called the oxygen company to confirm that they are coming tomorrow.  We are on our last tank.  They've been coming every two weeks for the last little while but I think we'll need to switch to every week.  We want enough to have freedom to go for walks and go out but also have a good back up supply for a power outage.

Tomorrow I'm meeting with our new case manager from CCAC.

One of these days I hope to stop eating junk.  Today was not that day.

I watched part of a memorial service online for a baby who was born eight days before Josiah in western Canada.  Unfortunately I didn't hear about her until the day after she went to Jesus.  She had hypoplastic left heart syndrome and was waiting for a heart.  (Josiah has hypoplastic right heart syndrome and other things.)  Her parents love Jesus and people all over the world have been praying for her.  Her mom wrote a blog.  I've only read a few entries so far but I'm reminded of things we went through in the hospital.  Both of our heart babies have the same bunny.  I can only imagine the pain they are now experiencing.  My prayers are with them.  I'm reminded to treasure this time.

Thank you for your prayers!

Blessings,

Elizabeth

Isaiah 43:2

 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.


P.S. Sorry - it's too late to fix my photo uploader

Internet Down

We arrived home and discovered that we don't have internet, so unfortunately there won't be a post tonight.  In case you were wondering how we posted this, thanks to my brother for posting it on my behalf.

It was a tiring day, thanks for you continued prayers.

Blessings,

Elizabeth

A fun day

We had a fun day in Listowel with family.  I'm still amazed that I hadn't been there since last July.  We arrived back at my parents' home just after 9:00 PM.  It took a while to get Isaac to sleep so I'm hoping he sleeps all through the night.

Josiah had a pretty good day today.  Thankfully he travelled well.  Isaac enjoyed spending time with his grandparents and aunt and uncle.  

It's time to get to sleep.  Thank you so much for your prayers!

Blessings,

Elizabeth

1 Peter 1:3
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, ...

Sorry - I can't seem to upload photos tonight.  I hope to figure it out tomorrow.

You know you're too tired when ...

... you park the car and close the locked door and then realize that the keys are still in the ignition and oh yes, the car is still running.  Thankfully my mother took slightly longer to get out of the car so her door was still open.  

I didn't sleep well last night.  The oxygen concentrator was down the hall so the room was not too hot or noisy but that meant that I could hear Josiah breathe and I don't enjoy listening to Josiah breathe as it's often a different sound than normal breathing (though I am incredibly happy that he can breathe).

It's nice to have Graham back.  He just went back to our home to pick up a few items including some oxygen tanks.  We're heading to Listowel tomorrow for the day to spend time with Graham's side of the family including his brother and sister-in-law from B.C.  It will be great to see them.  This is the farthest we've taken Josiah since last July so hopefully all will go well.

Josiah had a pretty good day but I think he missed going outside.  It was quite chilly today and we also didn't have all of his outside attire so he stayed indoors.

The visiting nurse came and she heard a little congestion on his lower left lobe but she thought he sounded a lot better than last week when she visited.  Praise God for that!  He still usually coughs in the morning but he also coughed some during the night last night.  I want the cough gone.

Josiah has been sticking his tongue out the last couple of days - a new trick for him.  This afternoon I watched him sitting in the Bumbo seat turning the pages of a board book.  I wish I'd had the camera.

Isaac and I had a Mommy son date today.  More on that tomorrow.

I need to say goodnight.  Thanks so much for your prayers!  I hope to sleep better tonight.  I found out that we can't use our shower until Monday so we'll stay here tomorrow night as well and then return to our home Sunday afternoon.  We like to shower.

Blessings,

Elizabeth

Psalm 23

¹ The Lord is my shepherd, I lack nothing.
²     He makes me lie down in green pastures,
he leads me beside quiet waters,
³     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
⁴ Even though I walk
    through the darkest valley,^[a]
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

⁵ You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
⁶ Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

P.S. No photos were taken again today.  Graham is picking up the camera from home so we should have some tomorrow.

A very good day

Josiah had a very good day today.  He did not moan and he enjoyed his play time and stroller ride and rolling on the bed.  He even ate almost half of a baby cereal bar and thoroughly enjoyed it.  He actually woke up around 5:00 AM and perhaps that is the norm as he rarely makes any noise in the morning until I come to see him and he shines me the most beautiful smiles.

I did not have a great sleep beside the hot and noisy oxygen concentrator last night but I was able to bring Josiah into our bed beside the crib for a little play time this morning so that was a treat.  Tonight the oxygen concentrator is in the kitchen.  Thankfully we have a long oxygen tube.  We're going to have to do something similar in our home as well so that his room doesn't get too hot.

Isaac also had a good day.  It's hard to beat wagon rides, playing at the park, digging in the sand, climbing on a climber, and having lunch with both sets of grandparents.  It was lovely to have a visit with Graham's parents today.

I was quite tired a couple of times today.   I was able to lie down and have a couple of naps but it's frustrating to be tired when I haven't done much.

Graham is enjoying the conference in Toronto.  We saw him on FaceTime a couple of times today.  I finished watching the movie Courageous tonight.  It's about fathers.  I am incredibly blessed to have an amazing father and to watch my wonderful husband being an awesome daddy.  My sons are also incredibly blessed to have two wonderful grandpas and four wonderful uncles all of whom love them.  Wow!

We had nursing care from 7:30 AM to 9:00 PM tonight.  The nurse we're getting to know started at 3:30 and the transition went really well.  She's lovely and we look forward to having her more often.

It's time to say goodnight.  Thank you for your prayers!

Blessings,

Elizabeth

Philippians 4:19
And my God will meet all your needs according to the riches of his glory in Christ Jesus.

P.S. No camera today so these photos are from this past weekend.

Lights out

A good hair day

It's just past 10:30 and all the lights in the house are off except for the lamp I'm using to type this.  Everyone else is in bed.  This would be a lovely normal.  I'm ready for bed and will head there as soon as I give Josiah his 11:00 PM meds.  Actually, Graham and I are sleeping in the same room as Josiah tonight.  We moved to my parent's this morning for a few days while the grout in our bathroom is being fixed.

It was a little hectic this morning getting packed up to come over here but we made it.  Josiah hasn't been the happiest camper at times but it's hard to know the cause for that.  He fell asleep on his stroller ride this afternoon and enjoyed time in his exersaucer before he went to bed tonight.

Isaac was beside himself at nap time this afternoon but a quiet story about Moutarde the Muskrat who met a boy on the shore who was crying (Isaac told me the boy's name was Isaac) managed to do the trick.

Graham is getting up very early to head to the bus station so I'll say goodnight!  Thanks so much for your prayers.

Blessings,

Elizabeth

Psalm 27:1
The Lord is my light and my salvation—whom shall I fear? The Lord is the stronghold of my life—of whom shall I be afraid?

Air Conditioner

Isaac and I hung outside for a while this morning.  He enjoys playing in the sand box, especially with his new digger.  I tried to clean a few things while he played.  Josiah enjoyed a long stroller ride and then returned just before lunch.  He was very fussy in his room and we attributed it to the heat and humidity.  My dad was there so he put in our air conditioner while Josiah spent a long time in the swing outside.  There was a nice breeze and the humidity broke.

One of the main challenges in Josiah's room is that his oxygen concentrator produces so much heat.  We didn't need to heat his room all winter as it did the job for us.  The air conditioner has helped immensely.  We may move the concentrator to our room and hopefully the window fan which Graham bought tonight will help remove the heat from our room.

We're having some wall tile regrouted and sealed in our bathroom starting tomorrow so we are heading to my parent's home for three days tomorrow morning.  It will be interesting to look after Josiah there.  Graham is actually leaving for a two day conference early on Thursday morning so we were able to book a nurse to come from 3:30 - 9:00 PM on both Thursday and Friday evenings.

We were grieved this morning to learn of the death of a beautiful young lady whom we had written about last September.  She is with Jesus.  Our prayers are with her family.

Thanks so much for your prayers!

Blessings,

Elizabeth

Jeremiah 32:27
I am the LORD, the God of all mankind.  Is anything too hard for me?

Happy Victoria Day!

We had a lovely day with family.  First, we went to Waterloo Park where the children played and looked at animals.  Isaac went there with my parents as we knew we would be late getting there with Josiah.  After that we went back to my brother and sister-in-law's home for lunch and naps and more fun.  Thankfully our nurse came with us and watched Josiah.  I wouldn't say Josiah was thrilled about this change of routine but the hot weather could have affected him as well. 

With all the sun and fresh air, I am ready for bed.  I think Josiah is sounding a little less congested.  Thank you for your prayers!

Blessings,

Elizabeth

Isaiah 54:10
Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the LORD, who has compassion on you.

Beautiful Gifts

We made it to church this morning.  We were late but thankfully the singing hadn't finished.  I think Josiah likes the music.  It was nice to be able to chat with a few people before heading home.

Friends from church brought supper over and we all enjoyed it together.  It was so lovely to have a visit with them.  They also surprised us with gifts for the boys.  Their daughter Alexa turned 10 years old last month and instead of asking for gifts for herself she asked her friends for donations to give Josiah gifts.  Wow!  She is one very special girl.  Isaac received a Thomas the Tank Engine backpack that is extra special as it belonged to Alexa's brother.

Alexa's classmates wrote letters to Josiah and they have been praying for him.  The letters were all very touching and it was a joy to read them.  Many of the children talked about how they had seen God work in other situations.  Thank you for the encouragement!

We've changed Josiah's schedule slightly.  Instead of a 9:00 PM feed we given the feed at 9:30 PM and then flush the line at 11:00 PM giving both his medications that were previously scheduled for 10:00 PM and 12:00 AM.  This means we only have to check his pop once in the evening at 9:00 PM.  I always hope he won't wake up when I put the stethoscope on his tummy and he almost always sleeps through it or falls right back to sleep.  I also now attach the oximeter sensor to Josiah's toe after he is asleep.  If I put it on when he's awake, he pulls it off. 

Thanks so much for your prayers!  It will be nice to have Graham home tomorrow.

Blessings,

Elizabeth

Matthew 11:28-30
²⁸ “Come to me, all you who are weary and burdened, and I will give you rest. ²⁹ Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ³⁰ For my yoke is easy and my burden is light."

Time for a swing

It was one of those days for which two year olds get their nickname.  I won't elaborate as it would not be profitable.  It was nothing spectacular, just tiring. 

It was still a beautiful day and I was able to go on a walk with both of my boys.  We saw a gorgeous cardinal and I always like seeing and hearing the red winged blackbirds.  I also saw little ducklings.

The four of us were able to be together in our backyard for a few minutes after supper.  Josiah fell asleep in the swing.

I'm falling asleep so I'll say goodnight.  Thanks so much for your prayers!  We're hoping to all make it to church in the morning.

Blessings,

Elizabeth

John 14:27
²⁷ Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Knowing and trusting

My sister-in-law was over this morning for a visit.  Isaac always has fun with her.  They went on a walk and saw some ducks.  Upon their return I received a lovely bouquet of three dandelions.  

Josiah hasn't been himself today.  He still sounds and feels quite congested.  I'm hoping and praying it's still "just" from his cold and nothing new.  Actually, we may have found a new reason for his irritability.  He's been biting his lip in a new way for the past few days.  I felt in his mouth tonight and found tooth number 8 is in the process of coming through. 

As of today we've made the transition to Isaac just having milk with lunch and dinner instead of before nap and bed.  He usually doesn't ask for milk when he wakes up but he sometimes does ask for it so I haven't yet decided if I'll give him a sippy cup or regular cup or just have it with breakfast.  I haven't been very diligent in teaching Isaac to dress himself.  I don't want my little boy growing up too soon.  I like helping him dress. 

During this whole process of being home on palliative care with Josiah it seems like we've been in waiting mode - waiting for something to happen.  I was thinking about trust the other day.  I know God loves me and my family.   I know He is in control and brings good out of bad.  I know God is good.  I know He is all powerful. 

So yes, I trust Him ... but I'm not sure I trust Him like Isaac trusts his mother's love.  I'm not content to just rest in my Father's arms and just take one day at a time, receiving my daily bread.  My head knows I'm not controlling anything but I still want to sit on the edge of the seat thinking, "He could die, he could die, he could die." ... because I don't want to be taken by surprise.  I want to be "ready."  As if any mother could possibly be ready for the unthinkable.

If I were talking to Isaac I would let him know that there are two choices - a wise choice and an unwise choice.  The wise choice is to fully place my trust in Jesus - talking to Him, walking with Him, asking Him to help me off of the edge of my seat - so that I can live in the present, knowing that Jesus will hold me come what may.  I think the more I get to know Jesus, the less I will want to be on the edge of my seat; I'll want to be as close to Jesus as possible.  

Thanks for your prayers!

Blessings,

Elizabeth

Psalm 131: 1-3

My heart is not proud, LORD, my eyes are not haughty; I do not concern myself with great matters or things too wonderful for me.  But I have calmed and quieted myself, I am like a weaned child with its mother; like a weaned child I am content.  Israel, put your hope in the LORD both now and forevermore.

Laughter

I think and hope Josiah's cold is getting better.  The visiting nurse came and she heard wheezing when she listened to his chest.  He doesn't cough a lot but when he does he sounds very congested.  We've been using the Ventolin and the vibrator and the cup on him before feeds.  His face is puffier and he's still moaning quite a lot.  I do hope we don't need to increase his morphine again.  It seems more like an uncomfortable moan rather than an in pain moan.  

Josiah and Grandpa had a good nap together in the rocking chair in the afternoon.

Isaac had fun outside this morning helping Grandpa and having a swing.  I love his imagination.  Graham told me that he'll fill in the blanks if you tell him a story so I tried at lunch time and we both enjoyed the story.  For example, "Once upon a time there was a _____ [horse].  The horse was very ____ [happy]."

Josiah was laughing in the photos below at a little pig.  It was very funny to watch him.  The nurse showed him the cow and the rooster that make a noise and he was completely Mr. Serious but as soon as he saw and heard the pig he had the greatest laugh every time.

I was able to complete some paperwork this afternoon and get it in the mail so that's one more thing accomplished.

I'm very thankful that Isaac is going to bed better than he used to.  He's calm again and he sleeps in later in the morning.  The last few nights he's woken up in the night but at least he goes right back to sleep.  I'm also so thankful that I haven't had to deal with diaper rashes with Josiah.  Isaac had a lot of diaper rashes so I'm glad that's not an issue for Josiah.

It's time for bed.  Thanks so much for your prayers!

Blessings,

Elizabeth

Psalm 46:10
Be still, and know that I am God.  I will be exalted among the nations, I will be exalted in the earth!

A better day

Josiah had a much better day today with periods of smiling and laughing.  The PT suggested yesterday that we keep using the vibrator over his chest to help loosen the secretions in his lungs.  We do that before his feeds.

I had a lovely lunch with a friend today.  It was such a treat to spend time with her.  Isaac ate lunch and napped at his grandparent's home and then I picked him up to take him home as his volunteer was coming for her weekly visit.  They had a fun time together.

I need to head to bed.  Thanks so much for your prayers!

Blessings,

Elizabeth

John 14:27
Peace I leave with you; my peace I give to you.  Not as the world gives do I give to you.  Let not your hearts be troubled, neither let them be afraid.

A happy birthday

Josiah moaned a lot today, barely slept, and was restless.  Thankfully, he fell asleep around 7:30 tonight.  The sat monitor went off around 3:30 AM last night.  It took me a while to wake up and get to Josiah's room.  As soon as I arrived at his crib and shone the flashlight he gave me a huge smile and laugh while he held in his hands the sensor that had previously been on his big toe beneath a sock.  As I tell Isaac, I have two "cheeky, cheeky boys." 

My best guess is that Josiah's system has not enjoyed the Pediasure today.  Hopefully I'm wrong about that.  It was probably unwise to start him on it while he still has his cold.  I switched back to formula at his 6:00 PM feed tonight.  I'll wait until his cold is gone to try the Pediasure again.  He was on it for a full day.  Grandpa had his work cut out for him this afternoon, trying to keep Josiah happy.

Isaac and I had a good time at the library this morning.  The next program starts in July.

Mom took me out for a birthday lunch and I had calls and visitors singing me "Happy Birthday."  Graham and I were originally hoping to go out to a pizza place for dinner but when it didn't work out, I chose a pizza I wanted from a restaurant's online menu (chicken, sundried tomatoes, roasted red peppers, and feta) and Graham picked it up on the way home.  It was very tasty.  I also picked up some delicious looking desserts to enjoy with Graham on the couch watching an episode of a BBC show.  We had a new nurse tonight who is getting to know Josiah and vice versa.  It will be nice when we are all well acquainted and we can leave Josiah with her alone.

God has been so good, gracious, and merciful to me over the past year.  I'm so glad I was able to celebrate my birthday with my husband and two sons.

I expect I won't be able to post a photo tonight (I always try after I write).  I suspect it's because I have a million tabs open (I think Graham would go crazy if we used the same computer).  If I close them and reboot my computer it would probably work but I'm going to head to bed instead.

Thanks so much for all of your prayers!

Blessings,

Elizabeth

Psalm 34:18
The Lord is close to the brokenhearted
and saves those who are crushed in spirit.

13 Months Old!

Josiah is now 13 months old!  It was a good day.  I didn't give Josiah any Tylenol today.  I've been giving it to him for a while to help with any pain from coughing and any chest pain from laboured breathing.

Josiah was weighed by the dietician this morning and he'd lost a little bit of weight.  I gave him his first feed of Pediasure at 6:00 PM tonight.  He wasn't too happy at the end of his feed so I decreased the amount for the 9:00 PM feed.  I'm hoping he transitions well to Pediasure.

The visit to the hospital went well.  The nurses at the clinic are so lovely.  His enox level is now within the acceptable range but I'm double checking with SickKids as I thought his level was supposed to be higher than normal.  Isaac seemed fine when we left but my mom said he became very upset for a few minutes.  She suggested that we take Isaac to the hospital if we have to go again for an appointment so that he sees where we are going. 

The visiting nurse thought Josiah sounded better than on the weekend.

Isaac and I will have our last library program tomorrow morning and then the physiotherapist will come in the afternoon.  A new nurse will be with us for a few hours tomorrow night.  She did some training with us last Friday for a few hours in the afternoon.  Hopefully she'll be able to catch on quickly and Josiah will take to her so that Graham and I can go out every so often.

It's almost time for bed.  I keep making silly mistakes like forgetting to hook up Josiah's milk.  I'm assuming this is due to lack of sleep so I'll say goodnight.  Thanks so much for your prayers!

By the way, our cardiologist at SickKids just emailed to say that he'll call me sometime this week to discuss next steps with Josiah.  He suggested that we should maybe try a non-sedate CT scan which wouldn't require anaesthesia.  We continue to pray for wisdom as my brother prayed for us tonight when he dropped by for a visit.  

By the way, for some reason my computer isn't cooperating and letting me post a photo tonight.  

Blessings,

Elizabeth

Psalm 55:22
Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved.

Happy Mother's Day!

Josiah likes his daddy's beard

Happy Mother's Day! 

This will be brief as I need to give Josiah his meds and then head to bed.  It's been a good but long day.  Josiah gets upset quite easily and he seems harder to console.  However, he went to sleep shortly after 8:00 PM so that was nice.  He coughed less today and I gave less ventolin. Graham and Isaac were able to get to church this morning and I read a lot so that was a nice change. 

It will be a busy day tomorrow as the dietician will come shortly after 8:00 AM followed by the OT and speech and language pathologist.  We then need to go to the local hospital so they can take Josiah's blood to test his enoxaparin level since we increased his dosage last week.  We also have to stop at the paediatrician's office to pick up some paperwork. 

Thank you so much for all your prayers!

Blessings,

Elizabeth

2 Corinthians 1:3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

Saturday

Josiah loves pulling his tubes

Isaac chose French toast for the breakfast menu this morning and then we made it together.  

Grandma and Grandpa F. hung out with us today.

The visiting nurse came by and listened to Josiah's chest.  She thought it sounded the same as yesterday.

We enjoyed a delicious dinner of chicken stuffed with goat cheese, raisins, and cashews.

For the first time ever, Isaac woke up this evening and said, "I'm scared."  He told me that his body was shaking and that he needed his water cup.  I tried to delve into what he meant by saying he was scared but  I couldn't figure it out.  I reminded him that Mommy and Daddy aren't far away and asked him who is always with him.  I wondered if his new library book had used these words but I just read it and it is no longer a suspect.  Thankfully he went back to sleep easily.  I don't want my son to fear.

One week ago today we thought we might lose Josiah.  He was throwing up, struggling to breath, was turning blue and his eyes looked very different all of a sudden.  We thank God (and the amazing medical staff we encountered) for giving Josiah back to us. 

Peacefully sleeping with his blanket

It's time to say goodnight.  The plan is for me to stay home with Josiah tomorrow morning as he is still coughing and Graham will take Isaac to church.

Thank you so much for your prayers!

Blessings,

Elizabeth

Isaiah 26:3

You will keep in perfect peace him whose mind is steadfast, because he trusts in you.

Thank you nurses!

Isaac woke daddy up this morning

It was so nice to see our nurse again this morning.  He clearly missed Josiah as well.  With Grandma F. here, I was able to get some naps in between visitors.  The physiotherapist came in the morning and she was very helpful.  She brought an electric massager with her and I use it on Josiah's chest over his lungs.  She said it can help him breath deeper.  I use it after ventolin and then I use the manual cupper over his chest as well.  She could hear wheezing when she listened to his chest.  She is a wonderful physiotherapist.

I hadn't realized that our nurse didn't know what was wrong with Josiah.  When he left after his shift last Friday, Josiah was fine and all the nursing agency knew to tell him was that Josiah was in the hospital.  He called our home but of course no one was here.

Our visiting nurse also came to examine Josiah today.  She'll pop in on the weekend as well.  Josiah is still coughing but thankfully it is a good, strong cough.   

The dietician at McMaster changed his feeds a little because he is not currently taking oral food due to the risk of aspiration.  I knew how much she wanted me to give Josiah but I didn't realize until I came home that I didn't know the recipe (number of scoops of formula and amount of water).  The dietician called me today and gave me the new recipe and she'll be here on Monday.  It sounds like we can switch Josiah from formula to Pediasure.  I'm praying he will transition well.  It should better meet his protein needs.

Isaac had a fun day playing with Grandma.  They played in the backyard for a little while before the downpour this afternoon and then he and I were able to play with bubbles in our front yard, just in time to chat with a neighbour who returned home.

We're praying that Josiah's sleep schedule returns to normal.  He used to fall asleep around 7:30 but at the hospital and the last two nights he has been wide awake until well after 9:00 PM. 

We were blessed with a surprise gift on our doorstep tonight.  We send a big thank you to the gift givers.

This week (May 6-12) is National Nursing Week.  Thank you to all of the amazing nurses we know and those who have cared for Josiah.  I read two quotations that I liked in Hospital News.  An anonymous person said, "Save one life, you're a hero.  Save 100 lives you're a nurse."  I like this description of a nurse: "They are a loud voice when they need to be heard and they are a very quiet calm voice when soothing and reassurance are needed."  I have certainly experienced both of these with nurses helping both of our boys.  I truly miss many of the nurses who worked with Josiah.   

Thank you so much for your prayers!  They make such a tremendous difference in our lives!

Blessings,

Elizabeth

Romans 8:31-34
If God is for us, who can be against us? ³² He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? ³³ Who will bring any charge against those whom God has chosen? It is God who justifies. ³⁴ Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us.

Home at last

We finally got the green light to leave McMaster this afternoon.  It took some time for the McMaster team to coordinate some items with the SickKids and Grand River follow-up teams, so it was about 3:30 PM when we left for Kitchener.  Josiah did quite well in the van, although he got a little grumpy for the last 10 minutes of the ride.  We got home shortly before 5:00 PM.

Josiah didn't warm to Isaac's hugs and kisses right away...

It was a joyous reunion with Isaac.  He was actually in the washroom when we arrived.  He told Grandma F., who was helping him, "I am excited!"  He gave Baby lots of hugs and kisses, and wanted to tickle his toes.  He also appreciated Daddy's whisker kisses and Mommy's hugs and kisses.  It was great to all be together again.

Our kind neighbour brought some delicious treats over after we arrived.  We are surrounded by so many wonderful people.

I (Graham) will be returning to work tomorrow, as our day nurse is back on in the morning.  My mother will be with us for all day tomorrow as well, which is a big blessing.  Elizabeth and I are certainly tired after nearly a week away, and are looking forward to a good sleep tonight. 

Josiah was happy to play in his exersaucer again

Josiah is relatively calm at the moment, but he has been pretty wired all evening.  He finally closed his eyes a few minutes ago, and hopefully his coughing won't wake him up in the night.

Thanks again everyone for your prayers and support.  Lord willing this coming weekend doesn't have the drama of last weekend!

Blessings,

Graham

One more night?

I'm typing this from Josiah's room at McMaster Children's Hospital.  We expect this will be our last night.  The resident examined him this morning and told me that she couldn't imagine we would be staying.  However, at rounds today they discovered that there were still a few things they wanted to do before we left.  One of those things was a blood test.  We missed the window this morning so it will be done at 11:30 tonight.  I'm happy it will be done but I'm not too excited about the potential affect on Josiah's sleep tonight.

He falls asleep much later than usual because there's quite a bit of light in his room.  Last night he woke up at midnight and was up until 1:30 and was miserable the whole time.  He was up a couple of other times after that.  He has long coughing spells and I think he's just having trouble clearing his secretions from the back of his throat.  The nurse was lovely.  She just felt so bad that there was nothing she could do to help Josiah calm down.  She's on again tonight.

I can't wait to have more options for Josiah at home.  I'm missing his Bumbo chair and exersaucer and swing and floor mat and numerous toys.  Thankfully we had my parents bring his chair so that he could be upright and not always lying down or in our arms.  

Graham drove to McDonalds for lunch today for McHappy Day.  We found out tonight that my parents also took Isaac there tonight in support of Ronald McDonald House.  We had a delicious meal at RMH tonight.  I went over and ate while Graham sat with Josiah and then we switched.

I'm going to try to rest now in case I'm up a lot tonight.  I imagine I'll be typing from home tomorrow night.  I'll be happy for Isaac to have us home.  He still loves my hair and when I sing to him before bedtime he's allowed to hold it (not pull it).  He told Grandma to "get more hair".  I didn't ask if she's planning to grow it longer. :)

We did talk to Isaac over FaceTime a couple of times today and he was able to blow kisses to Josiah as well.  He enjoyed going for a walk with the Hospice volunteer today.

Thank you so much for your prayers!  He needs to get rid of his cough.

Blessings,

Elizabeth 

Going home?

We might be coming home tomorrow.  We'll find out tomorrow morning after rounds.  Josiah is sleeping peacefully and I plan to do the same soon.  He's now on his home oxygen level and he had a new NG tube inserted today so hopefully that will last for another month. 

Josiah coughed a lot today for long periods and he's been quite upset at various times so I'm hoping he's able to sleep through the night and be happier tomorrow. 

Josiah had an echo yesterday and we were given the report today.  They didn't see any signs of clots in his heart so that's great news.  We didn't learn much more as Josiah was awake for the echo so they weren't able to get a good look at the pulmonary veins.  They also didn't compare these images with the images from his last echo in November. 

Graham went back to Kitchener after supper tonight and picked up oxygen tanks for our drive back with Josiah.  He was also able to see Isaac before driving back to Ronald McDonald House.  Isaac will be very happy to have us home.  He is much more aware now of what's going on.  We FaceTime with him but it's not the same.  Thankfully he slept well last night.  He has our photo by his pillow.

Thank you to the person who sent us a treat today.  We think we know who you are but feel free to let us know for sure. 

That's all for now as I need to make up my bed.  Thank you so much for your prayers!  We are so grateful to still have Josiah.

Blessings,

Elizabeth

Psalm 56:3
What time I am afraid, I will trust in you.

Monday at McMaster

Both the boys had restless nights last night.  I had put Josiah's arms in No No's before I went to bed because he was scratching his face but when I woke up to his coughing around 1:30 he had managed to get out of both his No No's without waking me up.  He coughed quite a lot last night.  Around 3:30AM he had a huge BM explosion all the way up to the top of his back so on went the lights and the nurse helped me clean everything up.  Apart from that, his oxygen levels have gone up and down but they are currently at 6L/min at around 30% oxygen.

Around 1:00 AM last night Isaac woke up at his grandparents house.  He was upset.  Mom told me he said, "Grandpa get in car.  Grandma get in car.  Isaac get in car.  Grandpa drive see mommy and daddy."  He was up for about an hour but seeing our photos helped.  One book about families has an old picture in the back of it with just Graham, Isaac, and me.  Isaac said we need a new photo with Baby Josiah. 

Isaac came and visited today.  How do they grow and change in one day?!  It was lovely to play with him and give him lots of love.  He's not able to see Josiah but he had lots of fun at Ronald McDonald House in our room and the play room.  He was a little sad to leave, saying, "I need a hug." and "Mommy help Isaac," the latter being something he says to keep Mommy in the room longer at bedtime.  He is a delight and it did us good to be with him.

Isaac was quite excited to try his first banana split at Ronald McDonald House.  I was sharing some of mine with him so Graham found an extra bowl and spoon but then Isaac was convinced that both bowls and spoons were for him.  He decided to let me have one when I said he could either have one or none. 

In addition to my parents visiting we had another friend from church drop by.  She just happens to be at McMaster with students for three days in a row.  She blessed us with some treats and she's going to drop off some medical supplies from our home tomorrow.

We found out today that we should be wearing gowns, gloves, and masks when we're with Josiah as he is in isolation.  They took a nasal swab this morning so we should find out tomorrow if we can stop the extra precautions. 

Josiah threw up a few times today.  I think the last time it was just because he couldn't clear some secretions and they were stuck at the back of his throat.

In case you somehow forgot, May 6th is National Hand-Hygiene Day.  If I recall correctly, McMaster PICU is one of 5 PICU's in Canada that were recognized for their hand hygiene.  I was given stickers today to give to the medical staff whenever they washed their hands.  I gave out lots of stickers when I was in the room.

It is such a blessing to be at McMaster.  God knew where to send us.  This PICU was completed last August I think.  There are twelve beds all in single rooms with lots of space for a parent.

Graham went back to Ronald McDonald House early so that he could do our laundry.  We're going to talk in a few minutes so I'll end this post.

Thanks so much for your prayers!  We need them.  God is taking such good care of us every step of this journey.

Blessings,

Elizabeth

P.S. It's 11:14 PM and Josiah just woke up.  He was grabbing at his wires of course.  I gave him his bird and he's smiling and wanting to play.  Hopefully I can convince him to go to sleep instead. :)  It's wonderful to see him smiling.  I don't have a camera on me so you'll have to take my word for it.

P.S. It's 11:13 PM

Gradual improvement

Great to know Isaac is having fun!

Josiah has gradually improved throughout the day, sleeping for most of it.  When he does wake he likes to grab at his nasal prongs (I'm sure having 8L/min of humidified air pumped into one's nose is not very comfortable).  His breathing has been laboured for much of the day, with quite pronounced indrawing at the ribs.  They have put him on morphine every 2 hours instead of his usual morphine every three hours.  He is still on continuous feeds and has tolerated them quite well.  Right now his oxygen saturation levels are in the high 70s which we haven't seen for some time.

Today we checked into the Ronald McDonald House Hamilton, which is located right next to the hospital.  It's about a 10 minute walk from door to door, which is such a blessing.  I checked in earlier in the day as we wanted to make sure at least one of us is with Josiah in his room.  Then Elizabeth checked in later, in time for the start of the free evening meal.  When she returned I went over to partake of the meal.  It was very yummy, and certainly a blessing to know that there is a free meal there every night we are here.  They also have a continental breakfast each morning.  And the truly amazing feature is that there is free parking!  I'll be staying over at RMH tonight and Elizabeth will be sleeping in Josiah's room.  We'll be able to use RMH for showers and laundry and of course the free meals.  Just a friendly reminder to everyone to enjoy some McDonald's on May 8th (McHappy Day) in support of Ronald McDonald Houses -- they really do make a difference in many lives.

We had a nice visit with friends from Burlington this afternoon.  It was great to chat, and then to pray with them for Josiah before they left.  We are blessed with so many prayerful and thoughtful people in our lives.

Tomorrow we will talk with the doctors, etc. and hopefully figure out a game plan.  We'll of course try to keep the blog updated as we know more.  Thanks again for all the encouraging emails today.  We feel your support and your prayers.

Isaac had a great time with his aunt, uncle, and cousins today.  It was wonderful to see him on FaceTime this morning and he was happy to see us.  He is one very blessed little boy!

Blessings,

Graham

Josiah's helicopter ride

One of the Ornge paramedics was kind enough to take some photos with his cell phone when Josiah and Elizabeth were on the helicopter.  Everyone wears headphones on the helicopter due to the loud noise.  The other paramedic put the mouthpiece out on Josiah's headphones for his shot.  Thankfully Josiah slept through the entire trip on the helicopter.  The paramedics were so kind and helpful.

Sunday morning sunshine

It looks like another beautiful day out there. 

Josiah had a fairly good night, but was certainly up quite a bit, as coughing seems to be painful and wakes him up.  Elizabeth and I got a bit of sleep on the pull-out couch, and just had some delicious bagels from the downstairs cafe. 

They put Josiah back on feeds, but have him on continuous feeds at 30 ml/hour, which is about equal to the 100 ml every 3 hours he has at home.  He seems to have tolerated the slow feeds which is a promising sign.

Thankfully we brought our meds for last night and this morning as the pharmacy here won't be open until this morning.  We were also glad that the paediatrician on call at Grand River yesterday was the one we had worked with in January when we took him to emerg.  She is really lovely, and even shares the same birthday with Josiah.

They tried 4 times at Grand River to get an IV into Josiah but were never successful.  The staff at McMaster have avoided trying to give him one for now.  Thankfully he's able to get hydrated through his feeds, and we can still use the NG tube for meds.

The resident spoke with us last night and they are still under the assumption that Josiah has a viral infection.  He reminded us that day 3 is usually when it is the worst, so that'll be around tomorrow.  The staff will do their rounds later today, so perhaps we'll have more to report after then.  For now, we're camped out in our lovely room in PICU (nice and spacious, with big windows that let us see the sunshine).

We trust you all have a wonderful Sunday.  Thanks again for all your prayers.

Blessings,

Graham

Back at Mac

Unfortunately Elizabeth and I are sitting in Josiah's room in the PICU at McMaster Hospital in Hamilton.  Late this afternoon Josiah's breathing became quite laboured and he started throwing up.  We ended up calling 911 and he was taken to our local hospital for preliminary checks.  They ended up arranging his flight to McMaster at around 9:00 PM (first helicopter ride for Elizabeth and Josiah!).

They think it is his cold that has caused this latest turn of events.  The main concern right now is his laboured breathing.  They want to avoid intubation as much as possible, so they have opted for larger nasal prongs with 8L of air/minute.  If that doesn't provide the relief they want to see, then they will look at using CPAP.  We'll be discussing all options with the doctors over the next few days, so we need God's wisdom in all of this.

Thankfully my parents were visiting us today, so they looked after Isaac after Elizabeth and I had to leave for the hospital this afternoon.  Later in the evening he went over to Elizabeth's parents and will be there the next few days while we get our bearings.  We are so blessed to have wonderful family so close and ready to help when needed.

Elizabeth and I will be camped out in his room tonight, but I think they will look into the local Ronald McDonald House for tomorrow. 

Thanks everyone for your prayers!  We appreciate all the love and support this past year, and continue to pray for a miracle in Josiah's life.  We also continue to pray for divine wisdom as we're once again faced with some major decisions regarding Josiah's care.

Blessings,

Graham

A cold

This was a productive day.  Isaac hung out with my sister-in-law all day and then played with his cousins after they finished school.  He had a wonderful time. 

I hung out with my parents for a lot of the day and was able to go to twelve different places to cross off twelve errands from my to-do list, including picking up medicines and medical supplies and dropping off paperwork at the paediatrician's office. 

Since our brief loss of power a few weeks ago, we realized that we needed more flashlights.  We are now ready to see in the dark if necessary. 

Isaac does not enjoy getting his hair rinsed in the bathtub.  He certainly makes it sound like we are traumatizing him when we rinse it.  We tried a new technique tonight but it didn't go over well.

Enjoying cake

After we pray with Isaac and sing our goodnight song, Graham says goodnight and leaves the room and I ask Isaac what song he would like me to sing.  He often picks, "Jesus Loves Me."  I told him tonight that some people don't know that Jesus loves them.  He agreed with me that that is sad.  

The other sad news is that Josiah has been coughing from time to time tonight.  I'll be listening to him carefully tonight and tomorrow.  We haven't dealt with nasal congestion before and I pray that we don't have to now.  He doesn't need anything to negatively affect his breathing.   

Thank you so much for your prayers!  We need your prayers for health and also for sleep tonight as Josiah keeps waking up.  We're thankful for God's tremendous goodness in our lives.

Blessings,

Elizabeth

Romans 12:1-2
Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship.  Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.

Sunshine and breeze

What a beautiful day!

Isaac and I went into the backyard this morning.  He enjoyed the climber and sandbox while I started putting together the swing set.  Thankfully Grandpa F. showed up and finished the job.  It felt great to be able to put Isaac and Josiah (separately) in the swing in their own backyard.  Isaac definitely enjoyed himself.  Josiah was sleeping when I put him in and he kept trying to sleep so we'll get a better idea tomorrow what he thinks of it.  Isaac told Grandma F. that he was "blowing like the wind." 

While Isaac was having his nap I walked to the store and found some sandals for him.  Grandma and Grandpa were at our home.  It felt so nice to just go for a walk in the sunshine and breeze. 

When Graham arrived home we asked Isaac if he wanted to go and show Daddy the new swing set.  He was too busy building his Lego.  He called us into the living room a little while later and showed us his creation.  He said, "Blew the trumpet, wall fall down."  We just read about the battle of Jericho a couple of nights ago.  Oh how he makes us laugh and smile.  What an amazing privilege it is

Josiah intrigued by the ceiling fan

to not only watch someone grow but to actually be a part of that growth!

I wrote the other day that a few aunts (through Graham) were going to come and visit but that I cancelled the visit due to my cold.  Well, two of the aunts made a cake for Isaac (they had asked him what he would like on Sunday) and Grandma F. brought it with her today.  Wow!  Delicious!  It made me think of a tiger brownie but then it had wonderful icing plus drizzled chocolate on top.  I'm sorry you didn't get to try some!   

The walls of Jericho have fallen

I was actually able to accomplish some paperwork and medical emails today so that felt really good.

Thank you so much for your prayers!  Isaac still needs lots of nose wipes but Josiah has been clear.

Blessings,

Elizabeth

Joshua 6:20
So the people shouted when the priests blew the trumpets. And it happened when the people heard the sound of the trumpet, and the people shouted with a great shout, that the wall fell down flat. Then the people went up into the city, every man straight before him, and they took the city.

B-I-N-G-O

A while ago I made up a short song for Isaac about giving people two thumbs up to encourage them because they did a great job.  Every so often at our kitchen table he'll put two thumbs up and ask me to sing the song.  This happened this morning.  At the end I asked him who we should give two thumbs up to.  He thought about it and said, "God."  We sang the song again for God. 

This afternoon Isaac came into Josiah's room with a book saying, "I know this one."  He showed me the cover of the book that he'd found on his shelf and then told me the letters: B-I-N-G-O.  He remembered the song so he could tell me that it spelled Bingo when I asked him.  He was quite excited.

Isaac went on a long walk this afternoon with his volunteer who comes on Wednesdays.  He saw ducks, and dogs, and a rabbit. 

Isaac likes his daddy's jokes; he keeps asking Graham to repeat them.  I am not sure how a two year old thinks he knows more than his parents but he is already hard to convince if he thinks he is right.  Graham was trying to convince Isaac that a cocoon is not called a raccoon but I don't think he was successful. 

It was a gorgeous day.  We went to the grocery store this morning to pick up some things.  Josiah had a long walk with his nurse.  He ate a good lunch and a large supper. 

It's time for Josiah's last meds and then I'm off to sleep.   Isaac has a cold but mine is on its way out.

Thanks so much for your prayers!

Blessings,

Elizabeth

2 Thess 3:3
But the Lord is faithful, and he will strengthen and protect you from the evil one.