Jameson smiled for the first time!!!! What a beautiful sight that was to see. He has such an amazing smile. I will try to catch his smile with a picture. I know that every parent thinks their child has the most beautiful smile well.....Jameson's HAS the most beautiful smile ever!!!!! His smile brings such a happiness to my heart like nothing else. Jesus knows how to pick me up and keep me going.
I am not sure if I have shared with you the condition of Jameson's hand and feet. I think that I asked you to pray for his movement and range of motion. Well, he has a condition called hyper-keritonosis (spelling not sure). This causes thick callouses on the palms of his hands and bottoms of his feet. This is one of the major problems with EB Simplex Dowling-Meara. Also, Jameson has the thickest finger and toe nails. They almost look like black caps on the tips of every nail. I tell you all of this because they have started to fall off and he has cute pink little fingers and toes. The skin does continue to blister around his fingers and toes, but just for a day his little toes and fingers look "normal". I have told some of my friends what a sense of humor God would have if He choose to make Jameson into a hand and foot model =). We were told that Jameson may have nerve damage to the tips of his fingers and toes. We feel that Jesus is showing his healing on Jameson by allowing those black tips to just fall off. We are very encouraged to see All that is taking place on Jameson's little body. Please continue to pray for no more blisters and complete healing. Right now he is getting a lot of new blisters on his back and stomach.
I know that in life we will encounter many things. I know that we are promised trails and pain....I also know that we are promised forgiveness, grace, mercy, and an everlasting love of the Father. I hold on to His promises daily, they get me through whatever this life has for me.
Love,
Melisa
Help! This dogs getting me.
7 comments:
So sweet!! Smiles really do touch a Momma's heart! Praise God for the encouragement and we praise God for your precious attitude and strength through this.
Smiles are the best medicine in the world. It's so exciting to hear how God is healing his little body one step at a time. Thank you for sharing with all of us. We continue to pray for complete healing.
Love, Glen and Debbie
Oh, Melisa, your and Todd's faith is just amazing. God is truly carrying you through each and every day. I check in on you often to make sure I don't miss an update. We love you all so much and pray that you will all experience God's love and grace.
Aunt Lynn & Uncle Dave
I am sure Jameson's smile is the best ever! I cannot wait to see it and love on both of you! Thank you God for healing and answered prayers!
Hey Setsma family!!
I am thrilled to see Jameson doing well. Isn't the human spirit amazing. I bet his smile is one in a million. I wanted to let you guys know that William is coming home!!! We are so excited and oh so scared. He will come home on an apnea monitor and we are getting trained on that tomorrow. William is 4 pounds 10 ounces. Patrick is slowly improving. He still needs respiratory support. He is currently 3 pounds 12 ounces.
I went online and read about the EB that Jameson has and I was encouraged for your journey. I hope with every smile and every successful battle with infection you guys gain hope and courage. You guys have faith in spades. Just wanted to let you guys know I was thinking of you.
Karen Jacobson
Good morning. What a beautiful family picture. I am listening to the Chris Tomlin song Glory in the Highest and I of course thought of you all since you suggested it. I just wanted to drop a note of encouragement and love that told you we will continue praying for you. Baby Jameson is in my daily prayer guide and I pray for God's healing, a life of purpose for him and for God's grace and mercy on him and your family.
Hi Melisa,
It's Melissa Barrus, an old "neighbor" of Keene's Pointe. Joi Martin filled me in everything you have been going through with jameson, and told me about this wonderful blog. I am so sorry jameson has had such a rough beginning. He is truly a beautiful baby! I am amazed at your strength, and so inspired by your faith. Please know that Jameson, you, and your family are in our daily prayers. We are also praying for him in my Bible Study. But, I also wanted to let you know that a friend from high school was just mentioning about her good friend who has a child with EB. She lives in Tampa, and I think her daughter is about 8 now. My friend said she would be a great person for information, as well as support. I know you are bombarded with information, so this may be too much. But, I will pass this along to you, and you can do as you please. Her name is Marybeth Sheridan. Her email is mbsheridan1@verizon.net. Her home is 813-269-2367 and cell is 813-503-6688. My friend April said that she has great information about doctors, bandage companies, support, etc. Hope this information is helpful. If I can do anything, please do not hesitate to call - 407-648-8252. My heart goes out to you.
God bless, Melissa
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