We had an appointment with Bug's neurologist today and we were put on yet another medication. She is being put on Banzel, a drug usually saved for children who have been diagnosed with Lennox-Gastaut syndrome. She will be starting it tonight and increase the dosage every 3 days, taking it twice a day. He warned us that it was likely to make her sedated and possibly dizzy...however we would know pretty quickly if it was working or not. We are ordering the ACTH injections again (that I give her at home), while we are trying the Banzel. She has a follow-up appointment next week to see where we are. If the Banzel seems to be working, we will have another EEG.
Her genetics appointment has been set for June 16th at Vanderbilt. We do not know exactly what that appointment will consist of, nor do we know that anything will come of that appointment. All we know is that it is one more step in the right direction in finding something to end this long battle with Infantile Spasms for Bug.
Bug will stay on the steroid for now, as well as the other three medication that she was already on prior to going out of remission. We are just concerned that these five medicines are going to be so hard on her little body. Especially the Banzel making her sedated....with her therapy sessions that could become a little bit complicated for her.
Thank you for praying. We truly appreciate it, feel them and know that the Lord hears them. Wherever two or more are gathered in His name...all we can say is thank you for taking the time to pray. We firmly believe that God has a big plan for Bug's life and this is all part of His story...as her parents we just want to skip ahead and know the ending....but truly the ending of the story is always sweeter if you wait on the Lord...
On a very happy and marvelous note...Kate is pulling up on everything! The crib, the couch, the pack'n'play..if it's there she'll pull up on it!
In the same way, the Spirit helps us in our weakness. We don't know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. Romans 8:26
I love that little one! Love the spunk she has too! Through it all, she keeps chugging a long! Definitly an inspiration for the rest of us! if she can pull up and smile and love life through everything she is dealing with, what do I have to comeplain about, ever?! I am praying for the Sweet benton family and believing Matthew 21:24, And whatever things you ask in prayer, believing, you will receive.
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