I wanted to share a sneak peek of some photos of Maddie that were taken last week. Click here and scroll down a little to see the pictures of Miss Maddie-boo. Angela Shea, an incredibly nice person and fabulous photographer, contacted me a few months ago to say that she would like to give us the “gift of photography.” She takes time out of her busy schedule to donate her time and talent to take photos for people with children who are going through alot. Below the pics of Maddie on her blog are those of others to whom she has given this same gift, a few of them from our oncology clinic. We are so appreciative of her time and cannot wait to see the rest of the pictures.

I had put off scheduling it because there never seemed to be a perfect time. I was hoping to get control of the seizures, let Maddie lose her steroid weight, grow her hair……I finally realized that the perfect time may never come and my beautiful child is 2 and a half years old and I have never had professional pictures taken of her (what kind of mother am I?) So, knowing she would probably feel like poo for the next few months because of the steroids (and that she would balloon up too) we decided we were ready. And Angela was so sweet to work with our schedule.

I had been waiting to share them because I was trying to keep them a surprise for my husband. I was saving it for Father’s Day. But I can’t keep things from him very long, and so when we were both feeling a little down after starting the ACTH and not seeing any results, I went ahead and showed him to try to brighten his day.

One last thing, for those of you that pray, please pray that the ACTH is working for Maddie. She is not seizure free yet, but we have seen some improvement in the last two days. I will be increasing her dose tomorrow and am desperately hoping that it will be just what she needs to knock these horrible seizures out so that she can begin to develop again.

Love to everyone,
Liz, Brandon, and Maddie

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15 thoughts on “

  1. Liz,

    Our baby girl was diagnosed with IS on April 17, 2009 and was put on ACTH. It is a very difficult path to be on with this drug, as it seems to transform your child. Just know that you will get through it, and it will get easier.

    We have been in the weaning process, and it has stopped our daughter’s spasms…Praise God! Thursday will be the last shot for us. I will keep you guys in my prayers, and pray that this drug will be successful for you guys too.

    Feel free to contact me if you have questions. I can share our experience with the ACTH and what it is like to go through this.

    Praying for you guys!
    Jody

  2. If there is one lesson learned in our journey with Zoey,it would be not putting ANYTHING off.The pictures are beautiful.Maddie is beautiful.Her journey has been difficult and unfair and I wish I had purpose and reason for it.I struggle daily with the questioning but in the end realize it is futile,wasted energy.Instead I try and focus on hope.Our prayer is that ACTH is Maddie’s miracle.She so deserves one.

  3. Liz – Maddie is the cutest thing going! I love to come to your blog and check out her cute little face.

    So sorry you have been facing the IS on top of ALL – I can imagine how difficult it must be for you and your husband to stay positive not get discouraged. I hope this new drug does the trick.

    Sue (ALL List)

  4. liz, maddie is SO beautiful! thsoe eyes just melt my heart and her new hair is adorable!!! thanks for sharing and i will be praying!!!

    -jacy (shawn’s friend)

  5. Beautiful pictures!! LOVE the one of the two of you-so sweet! Maddie is always in my prayers- missy

  6. The pictures are lovely…what a great gift. I know I put off getting pictures of Sophie during her treatment, but did at one point and was glad of it. Hoping and praying that the ACTH has the right impact and stops the seizures/spasms….

    Take care, Connie & Sophie

  7. Praying for you Liz and little Maddie too! Be strong in who you are. ACTH is survivable and for many it is the fix! I hope it is for you all.

    Love and Hugs!
    Bec

  8. Oh Liz. As always, the photos of Maddie are adorable. The one of you and Maddie is awesome. It is beautiful beyond words.
    We are all praying that the ACTH is the answer for precious Maddie.
    Love, Loretta

  9. I adore them all!! how could i not with such a precious subject?? the one of the 2 of you brought tears to my eyes. I sooo pray that the ACTH increase is the answer for Maddie!!! Thanks for sharing your beautiful little princess with us. hang in there!! {{{{hugs}}} monica

  10. What a sweet girl! Loved the pictures….
    Hope the meds are making a difference— we keep praying for her healing.
    Hugs to you ALL!!!!!

    jana & gang

  11. Hey Liz and Maddie, Just checking in to see how you are. Hope all is well!

    Love to ya!
    Bec

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