We have been back in Calgary for 48 hours now. What a joy it is to be in our familiar setting. Although we are still not able to live as a family in our home, we believe that day is approaching. Looking back at all that we have overcome during our 3 months in Edmonton, I can only praise God for his faithfulness. Thanks to the immense kindness of friends and family, I have managed to unpack, re-organize and settle back into our home. I wish you could all see the joy that Sadie experiences being back in her home. She is so excited to play with her old toys, sleep in her purple room and see the faces of those she loves.
We have been so impressed with our care upon returning to Calgary as well. One of our favourite cardiologists, Dr. Fruitman, is on service currently. She has been an amazing advocate for Hope and is getting others on board to move things forward. The GI team has committed to following Hope and has been actively involved in her care. We are going to be making a lot of changes this week, and it may be full of ups and downs. We would appreciate your prayers for wisdom and discernment as we work to get Hope eating again.
Hope's belly is at an all time low of 38 cm! This is very exciting, but also concerning as she has lost weight once again as well. Our hope is that she'll gain weight, but maintain her small belly as well. Today we switched Hope back to her original formula. This was changed in Edmonton as their hospital doesn't carry Hope's formula and they didn't feel it would make a difference. I tend to disagree and today we are testing that theory. If she does well, tomorrow they will pull up Hope's feeding tube and she will start receiving food in her stomach once again. If that also goes well, they will start giving Hope bolus feeds (large amounts at one time) and take her off continuous feeds the next day. Although she remains at 13 mls an hour, bolus feeds would get us closer to home. GI has a positive outlook for Hope's treatment and I am trying not to let negative experiences cloud my ability to believe them. I would be thrilled to make it home before December 1st, but would take December 25th if Hope needs that much time!
One glorious thing about our new living environment, is the private room! It is so nice to not worry about anyone other than Hope waking me up in the night. I'm sure I'll soon tire of the cafeteria food, but I am thrilled to be back in Calgary and would eat oatmeal 3 times a day if I need to. Thank you all for praying us home! Thank you God for being faithful, in sickness and in health, we believe you are good.
Praising God with you too! Love your message...cried, as you said "Thankyou God for being faithful, in sickness and in health! Amen!! and Amen!
ReplyDeleteOh Amy... what a gift! I love how quickly God brought all that together!
ReplyDeleteSleep well in your own space with your own sweet girl - and know that a massive multitude of people are lifting you, Hope, Shawn and Sadie to the Lord and asking for all of the things you listed above - and more.
Maybe even a Christmas morning at home as a family of 4.
Just sayin'... :)
Amy: I am so glad to hear that you and your family are back in Calgary. I will be praying for Hope's care this week and trust that she will do well with the new feeding amounts and schedule. "Have you not known? Have you not heard? The everlasting God, the LORD, the Creator of the ends of the earth, neither faints nor is weary. His understanding is unsearchable. He gives power to the weak, and to those who have no might He increases strength." Isaiah 40:28,29. That is my prayer for you and Shawn and for precious baby Hope. Remember that God is all powerful and He is always with you. He can give Hope all of the strength that she needs to adjust to the new formula and schedule.
ReplyDeleteKeep looking up.