Dance starts this week and I'm signing them up for a tumbling class at the gym where Owen does his "gymbtastics". Kamryn, bless her heart, still can't do a cartwheel to save her live, but her kicks and leaps are fab. Go figure. So everyday of our week will be filled with physical activity, including swimming in the afternoons.
{Gigi poses just like I always did as a kid. silly girl. Kam is much more of a modest poser}
On another note... I finally got all of Owen's tests scheduled for this Friday at PCH. He will have his cardiac CT and abdominal {liver scan} and I am going to try it without sedation first. If needed, we will try a little sedation and then get all his labs drawn while he's loopy. CT scans are so quick, that we will be home before dinner and down to bed early. I'm not overly concerned about these tests as they aren't too invasive, other than the IV contrast. We should have answers as to when they want to list him for transplant by the end of the month!! I am getting anxious.
On his good days I let my mind wander and think.. he's doing so great {for him} he doesn't need a heart! Then there are bad days where I pray for the day that he can finally know what it feels like to have a fully functioning heart. He won't know what to do with all his new energy! It's a daily tug of war with my emotions, but you all know me, I just keep putting one foot in front of the other. Life is too short to dwell on the unknown and I cannot change the outcome, so we live it up! I hope you are all enjoying your weekend!!
3 comments:
Your attitude is fabulous and your kids are so lucky to have you! :)
I know that this can be an uncomfortable topic to talk or think about for many different reasons, but some of the older 'heart kids' I know, who haven't been able to have a fully functional repair or transplant, begin to use powerchairs or electric scooters as they age out of toddlerhood so that they can keep up with their buddies and have independant mobility without dealing with a huge energy cost. (also helps the problem of carrying a big oxygen cylinder). It might be worth starting to look at, now that Owen's firmly reached the stage where he'd otherwise be able to get around unassisted.
My apologies if this post is somewhat unwelcome... but I've learned enough to know that that gentle nudge towards considering it is needed, sometimes. :)
{{{HUG}}} Dear friend this post tugged at my heart a little. I can't imagine all of the emotions you must be wrestling with right now. I am sure some days are tougher than others. Know that I am praying for you all and thinking of you lots!! Keep enjoying those good days and trying to find some good in those bad ones!
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