We escaped!

Hello all,

As much as we love the people on the 11th floor at Levines, we are incredibly glad to share the news that we are at home. It doesn’t mean that Miss Maddie is quite back to normal yet, but we just felt she needed to get out of there. She seems much happier and has been much more herself since we got to walk out of the hospital this morning at 8 am. We have already had a visit from the home health nurse to show me how to administer her IV antibiotics via her port here at home. She does still have her port accessed which means we cannot play quite as freely as we can when she is not having to receive IV meds. But we are thrilled to be home, and she really seems to be too. Two weeks is a long time to be inpatient.

We will restart seizure meds today too. The seizures are back but are milder than they have been in the past. We are not sure, but it seems like she may be having some different seizure activity than in the past. Her MRI was basically unchanged, so it does not appear that there was any new damage done by the septic shock and its treatment. So hopefully we will have some success with the seizure medication, and if we don’t we will just try another one. We will find a way to get some control over the seizures!

Right now we are just ecstatic to be home and that Maddie seems to be improving a little each day. We had an amazing view of the storm that came through Charlotte last night from our wall of windows on the 11th floor of LCH. Today is beautiful and we have already taken Maddie for a jog in her stroller. We are so thankful to have our precious girl back at home and getting better. Our lives have not been “normal” in a long time, and we don’t know how normal we can ever be again after going through all if this. But that lack of normalcy has made it possible (and maybe forced us) to learn to embrace the small wonders in life. The dogwoods look absolutely beautiful right now. And this recent crisis has meant I got to spend the last two weeks with my husband….what a concept! I wish it had been under better circumstances, but you have to look for the positives sometimes.

Happy Easter everyone!
Love,
Liz, Brandon, and Maddie, our miracle

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15 thoughts on “We escaped!

  1. Welcome home Maddie!!! That is the best Easter news! We hope it is a special day and you will be in our thoughts!
    Lots of love,
    Carrie, Zack, Elizabeth & Mary Margaret

  2. Praise God!!! Happy Easter! Enjoy being home with your precious girl. Maddie is amazing!
    Sending LOTS of prayers from Atlanta!!!
    Lori

  3. May each of you have a blessed Easter and enjoy your precious little Maddie. So happy she is out of the hospital. I know she had lots of smiles as you strolled her today. Lots of prayers continue by many for your amazing little girl.
    Loretta

  4. Welcome home Maddie! Liz, I can tell from your post how happy and relieved you are to be home and “free” again. I know that feeling well. Just in time for Easter too! How wonderful! Enjoy the outdoors and give Maddie a kiss from the whole Bolenbaugh clan!
    Sarah

  5. I’m so glad your little Maddie is home with you tonight. She is incredibly adorable and I enjoy reading her story. Especially when you have good new like today! 🙂

    Praying for Maddie…

    Kristine & Katie

  6. What fantastic news!!! You certainly made my Easter day even more blessed with the fantastic news! Enjoy your family today. The Janay’s

  7. We are sending so much love your way! Big Easter hugs! You are absolutely right … normal is not the same anymore, but I believe these journeys of ours have to be for something. You are a much stronger woman and mom than you probably ever thought you were capable of and your daughter has an inner strength that radiates outward. She is a gift to all of us. Thank you for being her rock and advocate! You keep doing what you are doing and the world around you will change!!! You are a force to be reckoned with and Maddie’s challenges will be dealt with severely! Your new normal will become part of you and you will continue to shine! Much love to you and your family on this day of new beginnings!
    Love,
    Kathy

  8. Happy Easter to all of you! So happy you are home for Easter! Always in our thoughts and prayers!

  9. Wonderful news… we are so pleased to hear that you are home… despite the fact maddie is still having seizures.. we know what being at home means . Still hoping and praying that they find a reason for the seizures and that maddie continues to get stronger every single day
    sending many get well wishes and prayers for your little princess
    Jane and Freja (denmark)

  10. Just checking on you all. Hope all is well.
    Hugs and kisses to little Maddie (and mom and dad too!)
    Bec

  11. Happy Easter Maddie. Glad to hear things are improving. The Kay Family sends all their love and wishing you for a fast recovery. We are back at the house so if Brandon needs anything back on this end, please, please, please give us a call and we will do anything to help. Hang tuff guys and gals. So glad to hear you are back home in the comfort zone. Hope the Easter Bunny was good to little Maddie.
    Love Bunches,

    Sam, Jim, Johnathon, Lexy, and Ayden

  12. I’m so glad you found that article on Topa/Vig helpful.
    What a truly precious little girl! I really thought we were enduring tough times here with the Infantile Spasms diagnosis…but I cannot imagine what you all have been through.
    It takes a lot of strength, courage, and faith to pull through something so traumatic with such optimism -which is without a doubt what I’ve seen throughout this site.
    My thoughts and prayers go out to you and your family.
    Holli

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