We had a good day today – and that was good because Jason left to go home for a few days last night and his mom came up in his place which I’m so grateful for. It’s nice to have help and there really are alot of children here to care for! I’m always feel a little bit torn and wish I could be in two places at once – here and the hospital – or maybe just have all of our family under the same roof again, which is such a novel idea I know. I usually stay here at the Ronald MacDonald House at night now as Ava sleeps well and typically doesn’t give anyone much trouble at the hospital over-night, but I do miss not being with her. I just called over to the hospital to see how she was doing, and the nurses that are caring for her tonight are cuddling her and playing with her and getting lots of smiles, so at least if she’s happy, then I can relax.
It’s so wonderful when the hospital staff care for Ava when I’m not there. It was cute this afternoon because when we all went to see Ava after lunch – Mudite and the kids and I – we walked in Ava’s room to find the music therapist there along with the PACT team and they were giving Ava an impromptu concert. We joined in and regaled her with such hits as “Puff the magic dragon” and “Twinkle-twinkle little star” and Ava just looked at all of us like we were crazy. And then when we got to the part in the song where the babies go “Wahhh, wahhh,wahhh” in “Wheels on the Bus”, Ava joined right in and started crying, but calmed down when the mommies on the bus went “shhhhh, shhhh, shhhh”. Oh it’s just hospital living at it’s best.
One thing about Ava is that it’s become clear that Ava is very dependant on her CPAP now. I though we wouldn’t bother to put in on for her morning nap, but then we didn’t put it on for her before lunch-time nap either, but when she finally did wake up, she still seemed tired and not at all rested. Not only that but her heart-rate was starting to climb higher this afternoon and her temp was starting to creep up again, so it would seem that she needs the boost CPAP gives her, as it helps her sleep better and takes the pressure off of her heart. So now it’s going to be mandatory for all naps, says me. And I think the Dr’s would agree.
So not much else new to report, other than we are surviving summer in the city. It seems so wrong to move your family to down-town Toronto for the summer, but we are doing fine so far and since today was the kids last day of school, we can make some plans that will allow the kids and Jason (and maybe even myself) to escape the city for a few weeks this summer.
Once again, we are so thankful for everyone’s prayers and support. Ava is definitely not getting worse and every day she smiles more and we are still praying and asking God for that new heart!