It seems it is time for a small update. Even Ed mentioned today that he had checked to see if he had missed a post! It has been a busy week plus as we dealt with a skin reaction that turned into an infection around Aimee’s central line. We were told to bring Aimee to the ED for admission as they were worried it would become a blood infection. The doctor was making plans for her to come, but we were able to argue for taking the risk of staying home. We have carefully tended it and are finally seeing good improvement at that site. Then our other kids came down with a cold that they promptly shared with Aimee and then with me. Just this evening starting to feel better. Aimee is still on some extra support, but holding steady.
Aside from adding these things on top when there just is not room on the plate for another pea-size addition, it is plain hard to update. Every single day is so different. Today Aimee had an INCREDIBLE day. She smiled and played all day long. Best day. Wednesday night, or was it last night… either way, Ed called me in because Aimee’s low heart rate alarm was going off and we immediately felt a strong grip squeeze our hearts. How can I write to you tonight with joy and then tomorrow with worry? Oh and earlier tonight with nausea realizing that saline flushes were not shipped and we will run out over the weekend. I’m not sure how to do any of this well at all. And sending out a post every few hours from a different view on the rollercoaster ride seems impractical.
Aimee is fairly well tonight. It is the most hopeful of times; it is the most despairing of times.
Thank you for so much grace. Your messages are balm to my heart, but it is really hard to communicate back to you. I hardly know what to say. Impossible to focus my gaze outside of this world here at home. Thank you for loving me anyway.
We understand your just trying to keep your head above water! Many of us are just worried for you all, and want to know how to pray for you.
ReplyDeleteHang in there dear ones. We love you! Lean upon the arm of the the Lord.
Hugs!
I have followed your journey for at least 10 years now...from that beautiful photoshoot of Aimee when she was just a baby. I just have to say that you and your husband are the most patient, amazing people there has to be. This child could not have ever had a better family to care for her. She is truly blessed, as well. Much love to you all in the next journey. xoxo
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