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.
Don't be too hard on yourself about Sadie... she still has 2 parents that love her and take wonderful care of her.. and I don't know a single 2-3 yr old that hasn't made this transition to testing their independence! These years have their moments with all parents and kids.. :) Praying for wonderful news tomorrow!!! Keep that dream of getting Hope home! It will happen!
ReplyDeleteI pray the video conference goes through as planned, it would certainly help you and Shawn feel a little better having that extra positive person (Doctor)with you through this planning. Unfortunately 2.5 yr old's have trying moments and please know that you are both amazing parents!! having to be at the hospital and so focused on Hope is what is needed now and I am very doubtful that will cause any ill effects on Sadie :) remember she is adjusting to having you back at home and testing as those going on 3 years tend to do. Always in my thoughts and prayers from Ontario
ReplyDeletePraying for your meeting! Praying for strength with Sadie, she is in a normal stage for a 2 year old (that's why they call it the terrible two's) but it is a trying time and it will pass.
ReplyDeleteYour concerns about Sadie bring back memories. I also have two girls, one of which was the 'perfect' child until she was about 2.5 years old. I woke up one day pondering who switched my child for the one who appeared out of the blue. That 'child' today is a wonderful, intelligent, caring mom herself. There are days, however, she wonders which of her own children's alter-egos will show up at the breakfast table. I simply have to laugh.
ReplyDeleteKeep on truckin' Amy. You are doing an amazing job. HOPE-ful in Ontario.
Just wanted to chime in to the other comments and say - don't worry! Sadie is showing herself to be a perfectly normal little girl who will grow up to be an independent thinker - just like I'm sure you want her to be! :) But will pray for you bc it's never easy to go through that stage as a parent...and you already have alot (that's an understatement!) on your plate. Good thing we have Jesus who takes all our worries & inadequacies and brings beauty from them!!
ReplyDeleteRe Sadie: Don't expect Norman Rockwell family mealtimes! She won't starve herself. Just be sure to have healthy, nourishing options available, and ignore her picky-ness. (A Grandma)
ReplyDeletejust a note about the toddler...at times I have fed the little one separately and then allowed him/her to play about in the room while we have our main course, joining us for the brief "privilige" of desert or salad. Just stopping the "war" for a temporary period gives the kiddie a chance to eat without a struggle; food they are enthused about, all alone with one parent reading a story, helping, listening, encouraging, while the other parent sets out the "big dinner" for the "big people". It provides respite from the stress and an incentive for the little one to want to join the older ones. Also is an idea to have the toddler bathed and pj'd so that an early night is an option if he/she won't play about quietly while the parents/older siblings eat in a civilized manner.
ReplyDeleteI have 2 children, my daughter is 7 and my son is 4. We have that same fight every dinner and sometimes lunch and breakfast. My only sanity saver is that the professionals say that they will not let themselves starve.
ReplyDeleteYou are doing a great job and I am in awe at how eloquent you write and how well you seem to do with everything you have thrown at you and your family. You are in my friends and family's thoughts and prayers regularly.