Family Medical Motherhood

Eskimo Kisses

August 12, 2014

My dear family, friends and prayer warriors,

As you might recall, Nora started a 7-week steroid treatment a little over two weeks ago. We were informed that we would most likely know if this treatment was effective within these two weeks.

Here is an update for you:

Over the last 15 days we have actually seen an increase in Nora’s seizure clusters but these clusters appear less intense than those Nora was experiencing before the steroid treatment. It seems like these less intense clusters have left Nora with more energy which enables her to engage more freely with her environment; cooing with her parents, batting her toys with her hands and sitting up in her new play saucer. It has been a blessing and a joy to see her fueled by fresh energy over the past couple of weeks. Although we have seen some improvements for Nora, the neurologists made it clear that they were hoping for a better response from this treatment as the goal was to stop Nora’s seizures. Unfortunately it is impossible to predict how Nora’s seizures might evolve or what new treatment options we will be pursuing in the weeks to come. As a family we are trying to take each day as it comes. Some days are better than others.

Last night the on call neurologist explained to me that, “when we see babies with malformed brains like hers, we often see..…..” Of course the relevant information was lost as my mind froze on that one word.

“malformed.”

God, it stung.

I got off the phone and whimpered to Tyler, “can’t he use another word beside malformed?” I started to cry (nope, don’t feel bad for me. I was long overdue for a good cry.)

Tyler rubbed my back and said, “Her brain is unusual Jess, not malformed.” Then he got down on his knees where Nora was laying on her play mat, rubbed noses with her and said, “You’re perfect, in every way.”

Nora smiled.

She loves eskimo kisses from Daddy.

I want to thank you all for your continued wonderful and faithful prayers. For those of you who have prayed against the negative side effects of the steroid treatment, so far Nora has responded well. She is currently healthy, her blood pressure is stable, her temperament is sweet and smiley and her appetite is hardy but not overzealous. Of course we know that all of this is variable. So we encourage you to remain faithful and pray for baby Nora and for our family in the weeks to come as we continue the steroid treatment and continue to explore treatment options. And as always, please pray for Nora’s developmental growth.

Blessings to you and yours,

Tyler, Jesse and Baby Nora

 


Photo credit: Jessica Rice Photography

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  • Reply Nancy costsnza August 12, 2014 at 7:48 pm

    She is such a perfect, beautiful great grand daughter, her parents also are wonderful. Nora has a differnt brain, so far it allows her to be a smiley happy baby that loves seeing her Parents. No telling what the furture holds I am praying for positive things so far I think Nora is doing fine with her develment.. You have all been in my prayers love Grandma

  • Reply Mike August 12, 2014 at 8:35 pm

    Dear Tyler, Jesse and Baby Nora. Please know that prayers come from all corners of our land and further. Every night I include Nora (and your family) in my prayers. My 33 year old daughter suffers from Epilepsy and we worry about her every moment. It’s heart breaking knowing what your family is going through. Stay strong, keep the faith as we keep praying. Thank you for sharing this update.

  • Reply Joanie Brandt August 12, 2014 at 8:36 pm

    Every night I pray for Nora’s physical and mental development, and for strength for all to handle whatever comes your way. I am so pleased to read of the interaction with her toys and especially with her Daddy and his loving Eskimo kisses.
    I know you have a long road ahead, but with your faith, your love for each other and for Nora, plus all of your prayer warriors, I believe things will be okay. I am sure no one is going to stop praying for this special and most beautiful little girl that God entrusted to the two of you, Jesse and Tyler. You are exceptional parents and have such love and faith. I am sending you continuing love and my faith is strong. Keep up the great work you both are doing. Nora is truly blessed, as are you.
    With love and God’s blessings,
    Joanie

  • Reply Mike August 12, 2014 at 8:44 pm

    Joanie, very well said. I am not good with words. Bless you.

  • Reply Mary August 12, 2014 at 8:55 pm

    Strawberry bound hair and blue eyes. So beautiful.

  • Reply Leticia August 12, 2014 at 8:58 pm

    She is just as God designed! Beautiful little lady! Nora is so blessed to have you as parents! xoxoxox

  • Reply Donna Beckman August 12, 2014 at 10:20 pm

    She is YOUR precious, perfect daughter whom you love with all your hearts. We continue to pray for you all – praying that the medicine works in the way that it is supposed to – but if not, that it helps Nora in a different way that will also help her! We will all pray – but trust the Lord as you have been. Life is an unknown and we don’t know the ending…just keep walking down the road and loving your Nora. Praying for strength for you both as this road can be long and difficult – but as you see, you are finding the joy in the little things – like Eskimo Kisses. 🙂 Kyle and Donna B.

  • Reply Monica Shore August 13, 2014 at 1:16 am

    She’s beautiful…So are her parents. Stay strong as we all pray for the best possible outcome for Little Nora.

  • Reply Eva August 13, 2014 at 7:30 am

    So beautiful to see Nora smiling. That tells me she can experience joy. And isn’t that what we want most for her? I will keep praying for all of you.

  • Reply kellyalund August 13, 2014 at 10:13 am

    I agree Nora is not malformed. She is perfect just they way she is. She is fearfully and wonderfully made. I remember feeling that way when a doctor referred to Brayden’s lump on his spine as a defect. God made him and Nora perfectly and has a purpose to work all things for good. Praying for healing, wisdom, trust, peace and for Nora’s development. She is beautiful and precious. God has delivered you, is delivering you and still will deliver you.

  • Reply Marci Hall August 13, 2014 at 6:22 pm

    Blessings for you all. When I wake at night because I can’t sleep. I pray for her. We keep her in our prayers through out the day.
    If you haven’t checked out Charlotte’s story from Colorado, please do. It is amazing! I know every child is different, but her treatment may be helpful for Nora.

  • Reply Joan johnston August 13, 2014 at 7:16 pm

    Thank you Jesse and Tyler for your heartfelt messages to us all. Jesse you are incredible writer and I fall more in love with Baby Nora and your family each time you write. You are an inspiration to all. I’m praying faithfully. Blessings to you all , Joan Johnston

  • Reply Susan Huhndorf August 13, 2014 at 11:26 pm

    Jesse, I’ve only met you a couple times but I love Andrea and care so much about your family. Nora is often in my prayers along with other prayer warriors in my network. Nora’s beautiful smile has touched many near and far. You all will be blessed in ways still unknown.

  • Reply diane mccorkle August 14, 2014 at 1:30 pm

    There is a top american neurologist at the boston children’s hospital/blaise bourgeois md who has won numerous awards in this field. Perhaps he can work with Nora’s doctors in finding the right medicine for her Look him up very interesting fellow. Love. Aunt diane

  • Reply Alice September 26, 2014 at 9:48 am

    Our prayers are with beautiful little Nora and your family. Be brave and trust. God will take care of the rest. Hugs and love. The Fellers

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