Good news! Stopping (stopped?) the seizures – Day 14

Today I come to you with good GREAT news. Eli has not had a seizure since Tuesday night at 10pm – exactly 48 hours ago!!! I was hesitant to share this news because I didn’t want to get your hopes up but, I am going to stay positively optimistic that we have started stopping the seizures. We are nowhere near the end – yet. He will stay on the high dose of ACTH for one more week. If he stays seizure free he will have another EEG at the end of the week or beginning of the following week. If that is clear we will begin the 3 week weaning process.

I am starting to see some of his personality return. He smiles, occasionally. He giggled once yesterday. I cried tears of joy. Even if it’s just a little glimpse, I am so happy to have my baby back. He’s a little bloated and has “moon” face (puffiness from the steroids) but he’s still the cutest boy in the world to me. ❤

Thank you, thank you, thank you for your continued prayers. They are working! It is with the outpouring of love and support we’ve received from all of you that has kept us strong. We WILL beat this!!!

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14 comments on “Good news! Stopping (stopped?) the seizures – Day 14

  1. Beautiful baby boy
    Baby of yours
    He’ll bring you pleasure
    Bring you joy
    He’ll open hearts
    He’ll open doors
    This beautiful baby boy
    Baby of yours!

  2. Great news Melanie to see first thing in the a.m.! Made my day! So glad Eli’s personality is returning, it’s so good to see those great smiles! Will keep the faith for you all. xoxo

  3. Yea!!! So very happy for you! Praise God! Will continue to pray for healing and strength for all of you! Love & hugs!

  4. Praise God that your little Eli has been seizure free. My wife and I are also going through this same experience with our 6 month old son. He has been on medication for almost a week now and we have not seen much improvement. It is very encouraging when I read you blog and how you really felt. Thank you for not sugar coating because we can certainly identify with those same feelings and frustrations. I will be praying for your little Eli. God’s Love and grace are far more powerful than a $30000 vial of Acthar, and may they be with Eli and the rest of your family. Your story is a blessing of encouagement. Thank you!!!

    • Thank you for your kind words and your prayers for Eli. I am sorry that you and your wife are also dealing with Infantile Spasms in your little boy. It is rough. I pray for strength for all of you. I’m here to try to answer any questions you may have. Hang in there!

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