One of the most frequent statements I hear about Brenna from those who have been following our journey is "her skin looks so good!"
She has come such a long way since her birth, and she does look like a completely different baby.
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But at the same time, I have to say that her face and top of her head by far look the best...as in the most like "typical" skin. And since it's been cold and we keep her in hats most of the time, her face is usually the only part of her body that everyone sees.
The skin on the rest of Brenna's body looks quite a bit more scaly and flaky...
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Her arm...
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The skin on her feet is some of the thickest on her body, and sometimes we have to put a topical retinoid called Tazorac on it to help it shed. I spend a lot of time on her feet in the bath, especially her toes.
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We scrub both her feet and her hands as best we can, to ensure that the skin doesn't build up and restrict the movement in her digits. She is now losing the newborn grasp reflex, which makes it a lot easier to get off the skin in her palms. The girl has a surprisingly strong grip for such a little thing.
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Back of her head...
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To be fair also, these photos were taken just before her bath, which is when her skin is at its worst of course. During bath, Evan and I are scrubbing maniacs, trying to aid her body in getting off this excess skin and keeping her joints and body parts as flexible as possible. (Her baby tub is full of tiny skin pieces after bathtime - it's not pretty, folks!)
We've definitely noticed an increasing thickness in Brenna's skin as we wean her off of the oral retinoid. Of course, it'd be fabulous if we could keep her on the medicine so that her skin layers are always a little easier to get off, but as with any medication, there are side effects (including liver problems), so we want to her to be able to adjust to life without medicine. Her skin will be like this forever (until a cure is found!), so I'm sure we will continue to modify our routine and figure out what kind of care and products work best as she gets older!
Hello,
ReplyDeleteShe's beautiful. I wish you all the best!
She is adorable! I am a friend of Hunters mom. I wish she were alive for you to talk with because she took such wonderful care of Hunter just like you are Brenna. Patti was diligent about Hunters care. Hunter has gown into a wonderful youn lady I am sad to say we lost Patti but Hunter is wonderful. I wish You well.
ReplyDeleteAnn Benko
Thank you for sharing all about Brenna with us. She is a beautiful little girl! You are doing an amazing job with her and I am happy that you are sharing her each step of the way with us.
ReplyDeleteI think you guys are doing a great job with Brenna. She has made such amazing improvements. I can't imagine how overwhelmed you must feel some days- but I hope you also feel encouraged by her progress, and the unconditional love of your two wonderful children. I completely understand why you would want to wean her off the steroids. You are doing a great job at making life more comfortable for your beautiful daughter in the care that you provide for her. She is so lucky to have you! Keep up the great work momma!
ReplyDeleteBrenna looks wonderful, and her progress is amazing. I enjoy reading your posts, and love the pictures of Connor and Brenna. Praying for your family every day!! God bless you and Evan in your parenting - you all are everday heroes.
ReplyDeleteI must say ya'll are doing an excellent job taking care of this angel. I had never heard of this disease and decided to Google it. I was truly shocked at what I saw. I can't imagine seeing those pictures after being told your child has that. Ya'll are amazing and so is that little girl. I have you all in my prayers.
ReplyDeleteI have been following your family’s journey from day one of your blog. Up until now I have never left a comment, not because I didn’t ever have anything to say it was just at times I often found myself in reflection about life, god, being a mother etc… due to your inspirational story/journey. So I often just sat back and read your journey while trying to find new perspectives and a deeper meaning within. I also found myself sharing your family’s journey with my girls (ages 3 ½ years & 8 months) “Checking on Brenna” has become part of our morning routine and some mornings it is even a request from my oldest daughter (Zoe); almost as if she looks forward to seeing Brenna :)
ReplyDeleteZoe often comments on how cute Brenna is and how she must be feeling better because lots of her “owies” are all better – but then there are days when even Zoe is inspired and your journey causes her to reach for a deeper meaning and really gets her thinking and processing in a way years above her age. Brenna’s story really makes her curious and she is intrigued to learn more about Brenna and her “owies”. I thought I would finally comment and share this because I know you have stated before one of your goals is to educate people about Brenna’s condition. I just thought that if there is a true testament to how many people and how diverse of population you are reaching with your story this would be it. You have officially reach the “preschool population” :) I know this may sound silly to some but in all actuality our children are our future; so you have reached and are educating those that will inspire society in the years to come. Your goal is truly being obtained!!
On a lighter note – I think my 8 month old daughter (Neela) thinks Brenna is her “internet friend” because every time she spots a photo of Brenna on the laptop she yells REALLY LOUD in her baby babbles at the laptop with a HUGE smile on her face!! Also the video of Brenna “talking” was a BIG hit; Neela sat and “talked” to the laptop right back at Brenna as if they were holding a conversation.
I only hope you and your family continue your crusade for Brenna and all other that face the daily challenges she does. I was once told that if you inspire and make a difference within just one person then you have done “your job” –you have defiantly given my two young daughters & myself (and most likely millions more) new perspectives and “changed” our lives for the better!! May God Bless!!
Brittni T.
Rochester, MN