Ready for bed

There is snow on the ground outside.  I'm very thankful that the snow waited until we returned from Toronto, though I imagine the view of snow falling outside our window at RMH would be lovely with the CN Tower in the background.

We will be sleeping in our own bed tonight.  We'll leave our door open so we'll hear Josiah if he wakes and we'll put him on the sat monitor overnight.  Last night we were both on a mattress on the floor of Josiah's room but we didn't get too much sleep.  Hopefully we'll all have a good sleep tonight.  We've been blessed to have Graham's parents with us the last two days and nights and my parents were here earlier tonight helping with Isaac.  We've been spoiled with all the care.  We now have a lock on Josiah's cupboard where most of his medications are kept.  I can't imagine Isaac being in Josiah's room by himself but we want to be careful.  It didn't dawn on my until today that Isaac could easily turn the dial on Josiah's oxygen concentrator which is on the floor beside his crib. 

Yesterday I realized that an oxygen mask had not been delivered (we only had the nasal prongs).  I called the company and found out that they were on order and would arrive on Tuesday.  I had decided to ask for an adult mask in the meantime as we only put it beside Josiah's face for blow-by but thankfully the order arrived just before our RT came to visit us yesterday.  We've since used the mask a couple of times when Josiah was desatting.  I thank God for the reminder about that mask and His perfect timing.

Tomorrow morning we will meet with the nurse again.  My parents will pick up Isaac for church. 

Today we enjoyed delicious meals and a visit with an aunt and uncle.  Josiah was fussy this morning until the nurse arrived around 9:00.  After that he had a pretty good day.  We were able to have him on a play mat in his room and he even tolerated tummy time and his other exercises well.  At one point I was holding Josiah and Isaac climbed up for a cuddle too.  Josiah's chest was uncovered and as soon as Isaac saw it he said, "Uh oh."  We tried to explain what had happened to Josiah.    

Each night we'll wash all of the syringes we used during the day and pack up baggies with the syringes we'll need the following day.  Josiah hasn't gagged or vomited for a number of days which is a great relief.  It could be because we have reduced the amount of his feeds to around 75 mL every three hours from 6:00 AM to 12:00 AM.  Also, he is only getting my milk without any fortification.  One of the palliative care doctors told us that some kids seem to perk up because they are no longer overloaded with fluids.  It's so easy to stick a specimen bottle full of my milk into a cup of hot water.  I'm thankful for the milk.  All the pumping was certainly worth it.      

You may recall that I wrote a few weeks ago that Isaac fell out of the bed at RMH.  What I found out later was that on that same morning, a couple offered my parents rails that go on children's beds because they knew Isaac was sleeping in a big bed.  One of the rails is now on Isaac's bed at our home and it's working great. 

Please pray that we stay healthy.  Thank you for all your support and prayers.  I was reading some of the previous entries on the blog and realized how many times something could have happened to prevent Josiah from coming home.  We're so thankful to be together now.  I'm going to go and get Josiah's medications and milk ready before heading to bed.

Blessings,

Elizabeth