Our weekend came and went so fast. We had to pass on a few fun events, but Owen was just not feeling it. He has had a few low grade fevers, vomiting, and that darn weakness in his legs. I spoke with our NP at LPCH today and isn't sure what is causing the leg pain, but all the other symptoms are IVIg side effects, which could be much worse.
I reserved Owen's portable oxygen concentrator for our trip back to Stanford next month and figured out the last minute details with the air ambulance team. I have been feeling so emotionally drained this weekend. I'm not sleepy tired, but drained. I sat on the kitchen floor today scrubbing the grout with bleach, baking soda and a toothbrush. I just zoned out while Owen rested on the couch and it felt good. I am trying to stay optimistic and prayerful. I know we are pursuing the right avenue for Owen to have the best quality of life, but I am struggling. I hate that another family with be grieving, while we are celebrating life. It's hard to explain the emotions involved.
Owen's little flush cheeks...
Kamryn has been drawing constantly. You know between her homework, violin practice, 7 hours of dance each week, reading and school... she draws. It's no wonder I can't assign her household chores, she has so much going on to stay busy. This was what she "doodled" last night. She is really interested in drawing Manga right now and I think it's because there are so many stories and emotions in each character.
She showed me this one last night and I said.. Are you sad? She laughs at me and says "no..not at all! Manga characters aren't all smiles!" Who knew?
Owen loves when Sis gets home from school!! Monday is her down day from dance so we snuggle up, watch tv, and have fun with her. Tomorrow is the followup with the ortho to ensure her ankle fracture has healed.. then she can dance on her foot again. She will be so thrilled! She hasn't missed out on PE much.. they have been doing square dancing and the "chicken dance" in PE for their dance unit and she gets to do sit ups and laugh at everyone. :)
Happy Monday.
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3 comments:
wow...great drawing! an artist for sure:)
I feel you! Getting your mind wrapped around transplant is enormous. We have been waiting for 9 months tomorrow. I have yet to get a full night's rest... I will keep you in my prayers if you keep me in yours :) Heart hugs, and prayers for healthy hearts soon!
Jen Wright
p.s. Kam has such a talent! She is a girl of many talents! You should be so proud. It's pretty great to have amazing kids :)
I can definitely see how you would feel that way about the transplant process. {{{HUG}}} Praying!
Kam is a great little drawer. That's awesome!! Keep encouraging that!
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