Hope had another good day. Not much is changing with her care at the moment. The doctors have decided to finish Hope's TPN schedule on Thursday. At that point, they are hoping to start introducing breast milk and see how she does. We are praying that there are no problems and we're able move forward and get this little lady home!
This afternoon I sat with the physiotherapist and worked with Hope. We are working to have her sit up and develop her core strength. She has a long way to go and it can be frustrating. At the same time, I see progress in small areas and feel encouraged. Some days it's hard to imagine that Hope will grow up and run around with Sadie.
Tomorrow at 1pm Shawn and I will be sitting down with the hematologist, cardiologist x2, pediatrician, GI doctor, nutritionist and a few others. They are hoping to video conference in Dr. Kantor from Edmonton, but are skeptical that his schedule will allow this. We are praying this miracle happens, it would bring a doctor into the meeting that believes our daughter has a future. This meeting will lay out a care plan for Hope and decide what is next for her. These meetings can be very overwhelming and at times discouraging. Please pray for Shawn and I as we prepare to absorb a lot of information all at once.
We are entering a difficult parenting stage with Sadie. She has always been a very easy going and obedient child, and she is starting to have some interesting moments. We need wisdom as we work at finding ways to have her obey us and remain patient. We also need to find a way to get her to eat dinner. Each night we sit down as a family and it seems to be a non-stop fight to get her to eat and sit with us. We're both so tired from the stress of Hope that we don't have the energy to deal with Sadie's behaviour. We want to raise our girls well and worry that our focus on Hope is negatively affecting Sadie. After a bout of poor behaviour, Sadie will turn around and be the wonderful little girl we've raised for 2.5 years and we wonder how to make that girl stay!
Thank you for continuing to pray for our family. I am still adjusting to being back in Calgary. There are moments in the day with Hope that I stop and think, I get to go home when I leave here today! It's always wonderful to end my day with Shawn and Sadie and to know that I'll be seeing Hope in the morning too. I try not to focus on getting Hope home constantly, it makes it difficult when things are delayed. On the other hand, it's such an incredible thought and a dream that sneaks into my mind often.