After talking with Dr. Thiele's amazing nurse (Jan) multiple times today, it appears that so far we have shut down the seizures that were so scary. We increased two meds this morning and tonight and that appears to have worked so far.
Today I stayed at home and worked so I could be near Oliver in case he needed his rescue medication. Our wonderful nurse (Tracy) came to the house to be with Oliver here instead of school. It was a great chance for me to spend more time with him today, and also be amazed by Tracy's patience and love. We feel very blessed to have such great CNAs!
Despite the morning getting off to a very worrisome start, Oliver is now sleeping soundly in his bed. We will be in touch with the Boston crew tomorrow to make sure the weekend plan is in place.
Thank you for the emails, texts and sweet ways you encourage us. It means the world to us!
Sometimes the phrase "medically fragile child" seems distant. Watching him stop breathing brought all of that home. We are thankful we have you all to lean on and pray for us in these hard times.
2 comments:
Hey Steph and Andrew,
Just updating myself on your blog. Haven't checked it in a while and I saw an article on CNN that made me think of you guys (I forwarded it to you via email). So sad to read about the recent scarier-than-usual seizures. Thinking about you (often) and still praying for miracles for you guys.
Love, Karen
Stephanie, I keep trying to leave a comment and alas must be doing something wrong. Hope this one goes through. Thank you for your update on how you and Andrew and Oliver are doing. Prayers for continued grace, mercy, and peace. You and Andrew are doing an amazing job with Oliver and I love seeing him at church and your smiling face as well. Blessings, Linda
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