What a difference a day makes. Yesterday we were totally discouraged and today we are totally encouraged. This EB parenting things is exhausting!!! A mental and emotional roller coaster.
Marcela Grubman P.A. and Dr. Connelly called 2 mother's of EB babies that live in the area and asked them to spend some time with us. Sally and Lisbey, the mother's, are AWESOME! They spent 5 hours with us in the NICU teaching us how to properly bandage Jameson. The information and time they spent with us is worth more than money or gold. We laughed a lot and we really needed that. The families with EB children are a close knit group. Sally and Lisbey knew all about us before they arrived and that's so comforting because we know that all the EB families already care so much for Jameson and our family.
Jameson was discharged this evening and we will be heading home Wednesday morning. Since our room was already paid for tonight and since it was in the middle of rush hour (Miami is like NY City to us) we decided to spend the night here.
Thank you so much for all your comments. We read them all and enjoy each and every one.
Todd and Melisa
Help! This dogs getting me.
Tuesday, July 29, 2008
Monday, July 28, 2008
Miami
What a day. When we arrived at Dr. Connelly's office she took one look at Jameson (and the fear in our eyes) and admitted us into the NICU at Jackson Memorial Hospital. She and her entire staff are awesome. She wanted to monitor Jameson for a couple days and make sure Melisa and I were totally comfortable with wound care before we went back to Orlando.
Wound care was really hard on Jameson today. He screamed for a couple hours. We know tomorrow will be much better. Being the optimist that we are...we did learn some good information on cleaning his little bottom (the rawest part of his body). If we can learn one good tip or trick a day we will be way ahead of the curve.
One of the leading EB specialist's in the country will be meeting with us Tuesday. To my knowledge he is the first Doctor to perform skin graph to an EB patient.
We will keep you updated as things unfold. We are so grateful and humbled by all of your prayers and support.
Todd and Melisa
Wound care was really hard on Jameson today. He screamed for a couple hours. We know tomorrow will be much better. Being the optimist that we are...we did learn some good information on cleaning his little bottom (the rawest part of his body). If we can learn one good tip or trick a day we will be way ahead of the curve.
One of the leading EB specialist's in the country will be meeting with us Tuesday. To my knowledge he is the first Doctor to perform skin graph to an EB patient.
We will keep you updated as things unfold. We are so grateful and humbled by all of your prayers and support.
Todd and Melisa
Saturday, July 26, 2008
Thank you
We are soooo amazed and thankful for the many words of encouragment everyone has sent our way. These last 14 days have been very hard, but the support and prayers from you all have carried us to a place of peace that only comes from Jesus. We love you all and cannot wait to tell you about our trip to Miami. Please pray that Jameson will travel well and that we will have a great time of bonding with him away from the hospital.
Zachary, our 5 year old, prayed tonight in a way that blew us away. His sweet prayer was beyond his years and understanding. God is doing great things all around us. Thank you Lord .
Love,
Melisa and Todd
Zachary, our 5 year old, prayed tonight in a way that blew us away. His sweet prayer was beyond his years and understanding. God is doing great things all around us. Thank you Lord .
Love,
Melisa and Todd
Friday, July 25, 2008
Busting out of here!
We have our walking papers. We will be discharged from Winnie Palmer on Sunday and will head straight to Miami for our Monday morning appointment with Dr. Connelly. We are all elated and ready to go.
Jameson's skin is growing very nicely and he now has complete coverage of all the "trouble area's" which consisted of his knees and ankles. The blistering is being held to a minimum and for that we are grateful and we know it's an answer to so many prayers.
Melisa and I feel more capable today than a couple days ago with respect to taking care of him. The feelings of shock and fear have greatly decreased and we are ready to move forward. We have a great support system with family, friends and our new EB friends that have been so helpful.
Please pray that Jameson doesn't get sick between now and Sunday. That would definitely keep us in the NICU and set us back.
If you haven't heard the Chris Tomlin song "Glory in the Highest" you must find it and listen ASAP. It's your homework assignment for tonight. It's a must. Awesome. Melisa and I have worshiped in the car with "Glory in the Highest" playing so loud that our ears were hurting.
As our good friend Jay prayed at dinner the other night..."Lord, we don't want to sell you short, we are asking for a miracle and complete healing". We are trusting God's perfect plan for Jameson and we know that whatever we ask in His name according to His will without doubting He will answer.
We serve an awesome God.
Jameson's skin is growing very nicely and he now has complete coverage of all the "trouble area's" which consisted of his knees and ankles. The blistering is being held to a minimum and for that we are grateful and we know it's an answer to so many prayers.
Melisa and I feel more capable today than a couple days ago with respect to taking care of him. The feelings of shock and fear have greatly decreased and we are ready to move forward. We have a great support system with family, friends and our new EB friends that have been so helpful.
Please pray that Jameson doesn't get sick between now and Sunday. That would definitely keep us in the NICU and set us back.
If you haven't heard the Chris Tomlin song "Glory in the Highest" you must find it and listen ASAP. It's your homework assignment for tonight. It's a must. Awesome. Melisa and I have worshiped in the car with "Glory in the Highest" playing so loud that our ears were hurting.
As our good friend Jay prayed at dinner the other night..."Lord, we don't want to sell you short, we are asking for a miracle and complete healing". We are trusting God's perfect plan for Jameson and we know that whatever we ask in His name according to His will without doubting He will answer.
We serve an awesome God.
Wednesday, July 23, 2008
Day 11 in the NICU
Jameson had a good day today. He had only 2 new blisters and new skin is growing. Thank you for all of your prayers. Dr. Knipe (the dermatologist) spoke with Dr. Lucky, the specialist in Cincinnati, she advised us to go to Miami. That is good news because it is soooo much closer to home. We will know in the next couple of days when we will be heading down to Miami. We are not sure when they are going to release Jameson. Please pray that Jameson stays healthy and strong. He is such a cute little guy with a fiery personality like his Dad (ha-ha). He will definitely let you know when he is not happy with you.
Todd and I really want to thank everyone for the encouraging comments. We look forward to reading them every night when we get home from the hospital. Your support has helped us get through such hard times and we cannot say thank you enough. Please continue to pray for a miracle for Jameson. God can, if HE wills, completely heal Jameson's skin. There is NOTHING our God cannot do for you and Jameson.
Todd and I really want to thank everyone for the encouraging comments. We look forward to reading them every night when we get home from the hospital. Your support has helped us get through such hard times and we cannot say thank you enough. Please continue to pray for a miracle for Jameson. God can, if HE wills, completely heal Jameson's skin. There is NOTHING our God cannot do for you and Jameson.
Tuesday, July 22, 2008
Good News!
Jameson had an okay day. He is eating very well and that is an answer to prayer. We are feeling a little more confident with his condition. We are now doing a lot of his dressing changes (which takes about 2 hours a day). He is such a strong little boy already.
We received good information about the biopsy...he does not have the worst level of EB. The other results were inconclusive due to the fragile skin. We are now waiting for Dr. Knipe, Jameson's dermatologist, to talk to two EB specialists to see which direction we should go. We will either be going to Cincinatti to see Dr. Anne Loucky or we will be going to Miami to see Dr. Elizabeth Connelly. Please pray that God will make it so clear on which doctor we need to take Jameson to see.
Thank you for all your prayers. We can definitely feel God working all things for His Glory. It's awesome to be a part of His plan.
Todd and Melisa
We received good information about the biopsy...he does not have the worst level of EB. The other results were inconclusive due to the fragile skin. We are now waiting for Dr. Knipe, Jameson's dermatologist, to talk to two EB specialists to see which direction we should go. We will either be going to Cincinatti to see Dr. Anne Loucky or we will be going to Miami to see Dr. Elizabeth Connelly. Please pray that God will make it so clear on which doctor we need to take Jameson to see.
Thank you for all your prayers. We can definitely feel God working all things for His Glory. It's awesome to be a part of His plan.
Todd and Melisa
Monday, July 21, 2008
What a week!
On July 13th at 10:39, we had a beautiful baby boy named Jameson Todd Setsma. He was greeted with excitement and joy. He has just a little hair and round cheeks. (The cutest little guy ever) He weighed 6 lbs. and 13 oz. ,and was 19 inches long.
Soon after his birth, we were told that Jameson had a rare skin disease called epidermolysis bullosa. This is a genetic condition that affects 1 and 50,000 children. We were in total shock and completely blind sided by the diagnosis. I still think, that we will wake up and this will all be a very bad dream. Well, it is not a dream it is our life. This definitely caught us off guard but it did not surprise our Lord and Savior.
There have been many ups and downs throughout this week. The "ups" are the love that our friends and family have shown to us during this most difficult time. The "downs" are many....too many to speak of but never more than we can handle. Jesus has held our hand and bottled our many tears. His presence has been felt and his grace is enough to get us through second by second. We do not understand any of this, and we have asked why us..... His answer has been to glorify HIS name.
We ask that you pray for Jameson's health while in the hospital (keep him safe from germs and infection), Jameson's pain to be minimal, nurses to come to know Jesus (as we always sing Jesus loves me to him while his dressing are being changed), wisdom in finding a specialist, and that Nicholas and Zachary do not feel the burden that we are carrying.
James 1:3-5 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him".
We will update again real soon.
We love you,
Todd and Melisa
Soon after his birth, we were told that Jameson had a rare skin disease called epidermolysis bullosa. This is a genetic condition that affects 1 and 50,000 children. We were in total shock and completely blind sided by the diagnosis. I still think, that we will wake up and this will all be a very bad dream. Well, it is not a dream it is our life. This definitely caught us off guard but it did not surprise our Lord and Savior.
There have been many ups and downs throughout this week. The "ups" are the love that our friends and family have shown to us during this most difficult time. The "downs" are many....too many to speak of but never more than we can handle. Jesus has held our hand and bottled our many tears. His presence has been felt and his grace is enough to get us through second by second. We do not understand any of this, and we have asked why us..... His answer has been to glorify HIS name.
We ask that you pray for Jameson's health while in the hospital (keep him safe from germs and infection), Jameson's pain to be minimal, nurses to come to know Jesus (as we always sing Jesus loves me to him while his dressing are being changed), wisdom in finding a specialist, and that Nicholas and Zachary do not feel the burden that we are carrying.
James 1:3-5 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him".
We will update again real soon.
We love you,
Todd and Melisa
Welcome to the JT Setsma Blog
The last week has been difficult for all. As Jameson's Uncle, I have dealt with a wide range of emotions that only a week ago I did not know I was even capable of.
Starting off the week, I was angry with God. I am now reminded that it is not my God that causes this. John 10:10 states that "the thief comes only to steal, kill and destroy. I came that they may have life, and have it more abundantly." I claim this for Jameson.
I have been deeply saddened watching Todd and Melisa grieve this illness. At the same time I remember that Ps. 34:18-19 states that "the Lord is close to the brokenhearted: he rescues those whose spirits are crushed. The righteous person faces many troubles, but the Lord comes to the rescue each time." I claim this for all of us who are grieving.
Lastly, I look to the verse that carried the BCS basketball team through the last year and carried Anthony Negrin through his illness. Isaiah 40:31- "but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
I am proud of you, Todd and Melisa. Your decision to lean on God in this tough time has really moved me. I, like many others will stand in the gap for you. Anything you need. Anything.
All my love to you, Jameson, and the boys!!
Uncle Mark
Starting off the week, I was angry with God. I am now reminded that it is not my God that causes this. John 10:10 states that "the thief comes only to steal, kill and destroy. I came that they may have life, and have it more abundantly." I claim this for Jameson.
I have been deeply saddened watching Todd and Melisa grieve this illness. At the same time I remember that Ps. 34:18-19 states that "the Lord is close to the brokenhearted: he rescues those whose spirits are crushed. The righteous person faces many troubles, but the Lord comes to the rescue each time." I claim this for all of us who are grieving.
Lastly, I look to the verse that carried the BCS basketball team through the last year and carried Anthony Negrin through his illness. Isaiah 40:31- "but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
I am proud of you, Todd and Melisa. Your decision to lean on God in this tough time has really moved me. I, like many others will stand in the gap for you. Anything you need. Anything.
All my love to you, Jameson, and the boys!!
Uncle Mark
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