The last few weeks have not seen a lot of changes for Carly. Her seizures have decreased in intensity and frequency a few times as her seizure medication has been increased, but each time they have eventually returned. The medication reached the maximum dose last Friday and for a few days she only had 2-3 short seizures each day lasting around 30 seconds but they are back to 7 or so a day that last anywhere from 3 to 15 minutes. When the seizures first started we were told that it may take a few months of trial and error with a short list of medications to get them under control, and it looks like we aren't there just yet. Carly will have a few blood labs and another EEG on Tuesday to give some additional insight on how she is doing and the neurologist will either continue to increase her current medication or begin the taper up with a different one.
While Carly has been dealing with this issue, we had the opportunity to go to Hawaii for a part business (a work convention) and part pleasure getaway. We were a bit concerned since Carly's seizures were not under control, but the neurology team assured us that the seizures were not an imminent danger to her and they felt that Christa and I could care for her just as well in Hawaii as we do at home. It ended up being a great time away in the sun, and Carly had many moments when she was clearly enjoying herself. From her first bite of fresh pineapple to her first session of floating in the ocean (ok maybe she didn't love that, but in the end she did seem relaxed) she definitely liked island life. Christa and I got into the island life right away too and it was a great way for all of us to relax a bit as we try to help Carly get past this hurdle.
Love, Brad
11 comments:
Good luck finding the best medication/dosage to stop the seizures! How wonderful you were able to go to Hawaii and relax for a bit! Always visualizing a healthy brain for Carly. ((HUGS))
I love this photo, floral patterns and a flower in her hair suit Carly perfectly. She looks very happy soaking up island life and I'm so glad you three got away.
I visualize a healthy and vibrant Carly every day and hope that with the right combo of meds, the seizures are soon a distant memory. Sending love from sunny SOMA. xo
so happy you were able to get away and enjoy some island time...you all deserve it! praying for balance with carly's medication levels so she can continue on her healthy path.
much love and looking forward to seeing you next week :)
that picture is adorable! So glad you all got to take such a nice vacation together. We continue praying for Carly's continued progress and hope that these seizures settle down and fade away with the right meds. We love you guys and wish you much more island-style living (no matter where you are).
I love that you guys went to Hawaii! And I love how Carly takes her stuffies everywhere, for her photo shoots, that is. :)
that's great you all got some relaxing time and got to get away and enjoy hawaii. miss you guys and looking forward to this coming weekend :-)
Nothing like the Hawaiian sun, sand, and nature to lift and soothe your spirits. Hope the doctor visits shed some positive light on the proper dosage for Carly!!
Love,
Lance and Mark
I love this pic so much Carly's so cute.
I love that she tried pineapple!
You three really know how to have a good time! Love to you all!
very cute pic. great seeing you guys this weekend.
sending positive vibes as always as you all manage through this phase.
xoxo
Becca
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