Monday, 3 September 2012

Every Centimeter Counts!

It's me again.....Charlotte (Amy's mom)...... Amy is sleeping at the hospital with Hope tonight and there is no wireless there so she has asked me to update the blog for her.....

Today was a quiet day - no tests or procedures, and not much change in Hope's meds or care.  On a positive note, Hope's tummy did not increase in size and even measured 1 cm. smaller today!!  Hopefully, the new diuretic and change in her formula is helping!  She's got a long way to go yet but the GI docs were pleased that she hadn't gotten any bigger. 

Tonight, they noticed that Hope was a bit congested and were concerned that she may have a cold.  It was mentioned that, even if her stomach improved dramatically, they would not proceed with the heart cath if she had any hint of a cold or infection.  Please pray that she will be able to fight off whatever has made her stuffy and that she will not have any further reasons for delaying the heart cath.  If her stomach issues subside and she is clear of infection, the heart cath could possibly be later this week. 

Tomorrow will be another echo and possibly some more bloodwork.  They are now taking Hope's blood from her head, as that has been the only place they have been able to get a vein.  I have to leave the room when they do this, as I just can't bear to watch and listen to Hope cry her eyes out.  My heart breaks for her and for Shawn and Amy who helplessly watch their little girl struggle and fight through the whole process.  It's terrible to watch your child suffer - there is just nothing worse. 

After being here and experiencing everything first hand again, I am reminded afresh of how much  Shawn and Amy and Sadie really need your prayers as well.   Tomorrow Shawn returns to work at the office here in Edmonton.  Pray for him as he balances work during the day and spending time between Sadie at the RMH and Hope at the hospital in the evenings.  Pray for Amy as she will be sleeping at the hospital now during the night, while Hope is on the ward.  She is also battling a toothache that has resulted from the marathon dental appt. she had a couple of weeks ago.  She feels she likely needs a root canal but has no idea how she will ever fit that in!!  Sadie is definitely feeling the disruption of normal routines and the general strain of being away from home and living again at the RMH.  She seems to reach her breaking point in the day and then has a total meltdown when the littlest of things goes wrong!  Poor thing, this is all so hard on her as well and she really needs your prayers. 

These are not easy days, but in the midst of the upheaval and uncertainty, God always reminds us that He is ever-present and providing for each and every need.  Tonight, as we were sitting at the table having dinner, someone that we have never met came to the RMH and brought us several meals and snacks for the next few days!!  This is such a huge blessing as making dinner after a full day at the hospital is almost the last thing that you want to think about!  We were blown away, again, by God's amazing provision and how He has lavished us with His goodness!  He is loving us through so many people and we are so humbled by His amazing love and kindness towards us.  What a great God we have looking after us!! 

I sit sometimes and try and think of more creative ways of thanking you all for praying for Hope and her family.  There is just no other way to express to you all how much we covet and value your prayers.  We know, without a doubt, that there is power in prayer and that God moves when people pray.  As God lays it on your heart to pray and plead for this little girl's life, please know that we feel privileged and blessed that you are continuing to bring her to the foot of the throne and asking God to heal and restore and strengthen her little body.  We continue to entrust her into His capable hands.


  1. Thank you for sharing the days in the life of Hope, and her family! Always, wonder how Sadie is handling things, and it must be so hard for her.
    For you, as Amy's mom and Sadie's grandma, it must be so difficult to hear, watch, and listen to all that is not being said!
    Life sure isn't what we want it to be, BUT God is Big, HE wasn't total healing for your little Hope, so that is what we will continue to pray.
    I understand she is on the donor's list as well?
    Either way God heals this little angel, she is just that! She has been through so much in the short time she has been with your family.
    May God continue to keep you all filled with His Joy, Peace, and Faith that HE is all that you need!
    Trying times, yet as you said, there is so much power in Prayer! We as Believers forget that, we love to hear how HE is moving in Hope's life, so thank you for sharing this.
    Will be praying until.......

    1. I wrote "wasn't" when I mean't that God "WANTS"