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