We're home!

Phew! We made it home late yesterday (Tuesday).

It was a very busy day as we pushed the hospital staff to get us discharged. We visited Canucks Place which is a huge beautiful old Victorian home in Vancouver that has been converted into a respite center for children needing palliative care. If we feel uncomfortable with Amryn dying at home then we can live there as a family and they will provide everything we need including meals and medical care. It's amazing how we're blessed to live in a country that does reach out and care for its people. Apparently this home was donated by someone who wanted to help the community. The staff at Children's Hospital in Vancouver have also been very helpful and it was amazing how relationships were built in only a few days.

We also had to pick up supplies and food pumps, more visits with doctors, NG feeding tube training, visits with family, feeding and caring for Amryn, and finally waiting for Amryn to provide that one last elusive urine sample. (this was VERY important according to the doctors for their DNA research and they were literally waiting all day for it which gave us a few laughs).

So now we're home and are busy getting our life ready to try treat Amryn as normal as possible. We arrived home to find a huge seven course meal sitting on our doorstep (thanks Marg!) and flowers from Robyn's grade one class. The answering machine was full of messages which I finally got through today. We were tired but glad to be home.

Unfortunately the night turned into a bit of a stressful adventure as Amryn ripped out her feeding tube at about 3 AM. Lisa just happened to glance over as she saw Amryn catch her finger under the tube and flick the tube right out of her stomach and through her nose! This never happened before and of course it had to happen to us right on our first night alone. Lisa freaked! We were not trained to reinsert the tube and were told in the unlikely event of this happening to return to the hospital and get it reinserted. I didn't think a trip to emergency sounded like a lot of fun so after calming down we read the manual and decided that we could give it a shot. So Lisa tried to hold Amryn still while I carefully lubricated the tube and gently tried to insert all 10 inches down her tiny nose. After a few false starts, it worked! We carefully extracted some fluid to determine if the tube was indeed in her stomach and when we saw the curdled breastmilk we knew all was well. Now Amryn is restricted to wearing mitts if her hands are ever free. We don't want to have to do that again! :)

Here's Amryn sleeping peacefully in her new hospital bed:


No longer does Lisa have to try squish into Amryn's hospital crib like this:


We look forward to having lots of snuggle time with our little girl. Our spirits were high as we left the hospital since Amryn seems to have stabilized quite well. We have no idea what the next weeks or maybe even months will bring but we are learning to enjoy each day God gives us and thank Him for each blessing we receive. Perhaps the disease will take a different course than with Rachel, no one knows for sure except her Creator.

We will continue to try and let you know how things go and perhaps the next entry can be written by Lisa. Over 2,000 different visitors have seen our blog and we continue to be humbled by the stream of emails that we receive. Please understand that even though you might not receive a reply from us we truly appreciate each and every word of encouragement. Indeed God carries us in a very tangible way. May God continue to use this for His glory, and may we all marvel at what a miracle each and every life truly is.

I'll end with a photo of my two beauties . . .