Help! This dogs getting me.

Help! This dogs getting me.

Friday, December 26, 2008

Gracyn Den Besten

Please lift our good friends Kris and Robin Den Besten's 9 year old daughter up in prayer. She has a virus attacking her heart and is on a heart and lung machine right now as well as oxygen. They are preparing to transfer her to Shands, in Gainesville, to be ready for the possibility of a heart transplant. Please pray specifically that her heart strengthens quickly and we will give GOD all the glory!!!

Thank you,


Wednesday, December 24, 2008

Merry Christmas!

Merry Christmas! We are sorry it's been since Thanksgiving since we updated all of you. Please forgive us.

Jameson is doing well. In so many ways he's the same as he has been all along. In other ways he is progressing a little bit. Let's start with the progressing part, it's more uplifting. Yesterday he gave us kisses!!! Remember when your kids were babies and they kissed with open mouths? It was a milestone passed. I said to Melisa last night at dinner that, "we spend so much time taking care of Jameson that it seems that we forget to enjoy him and teach him the little things like giving five and giving kisses". It was awesome to see him smiling from ear to ear. He is also wanting to sit up. When we are holding him on his pillow he tries his hardest to do a sit-up and get out of his laying down position. He's so alert and wants to see everything that's going on around him. We have started to sit him up on the sofa with one of those horse-shoe pillows around him. He's doing great.

As for the "same" part, his skin has not improved. He's still blistering each and every day. We are still bandaging his entire body each and every day - no days off. He doesn't even give us the major holidays off :) His hands and feet still pose the biggest problems. They blister and callous daily. When we finally get some of the thick nasty skin off we are so excited until the next day and there is nothing but blisters. It seems like a never ending process. Jameson is still not eating well either. He's just reached 12 pounds soaking wet. He's not even close to being on the percentile chart and that is causing some concern. Last, he is having some respiratory and breathing issues and we are giving him albuterol breathing treatment's 3 to 4 times a day. Have you ever tried to hit a moving target? Try holding a mask up to a babies face while he's squirming all around. We aren't able to put the mask directly on on his skin because it would blister him, so just picture us holding the mask to his nose and mouth without it touching him. IT'S A REAL SIGHT (you should be laughing out loud right now). We have hope though!!! We know 2 things that keep us going fervently each and every day. 1. Jameson is God's baby and he is so loved by the Creator of the heavens and earth. God is holding baby Jameson and has an incredible plan for him. 2. We have the hope that Jameson's skin will repair itself at some point. We don't know the timing of this, whether it will be 2, 3, or 4 years from know, but according to the diagnosis we have that hope.

We went and saw a nutritionist yesterday and she shared with us some encouraging news. She is suppose to be the best in Orlando and she agreed to come to the office yesterday even though she is on vacation. We will meet with her next week after she does her research on EB. We will let you know what we find out.

Please pray for Melisa as you are praying for Jameson. Some days are so hard for her. She's a wonderfully strong woman, yet some days really get her down. Thank you for all your concern and love for her.

Have a Merry Christmas. We love you all.


Sunday, November 23, 2008

WOW! Jameson is 19 weeks old

We just went to the doctor for Jameson's 4 month check-up. Dr. Coffman was very impressed with Jameson's personality. He would smile and try to talk to the doctor. It was cute. Jameson passed almost all of the 4 month milestones. He can track and follow you with his eyes and smile. Jameson can (with help reach for things), but he can not roll over. Dr. Coffman was not surprised. Jameson has only been on his belly one time and it was not a pleasant thing to do. He did not like it at all. So...we cannot roll over yet. From my understanding this is an OK delay because of our EB. I have come to realize that we will be delayed in many areas, but we will catch up with time. When Jameson is 6 months old (depending on his skin), we will start physical therapy. I have stopped wrapping his hands and he still gets blisters but I believe that him moving his fingers are more important than the blisters right now. Anyway his hands blister even when they are wrapped so.......Jameson will hold onto our finger now, where as, before he could not even feel if your finger was in his hand. I truly hope and pray that I am not causing damage or even pain to him. I don't think he cares. I am just happy that he is using his hands and fingers little more.

At the doctors appointment, we were told that we could start solid food. Well, that is exciting for a baby without EB, but a baby with EB...NEEDLESS to say I was really nervous. I thought, what if I blister his little lips or what if the food blisters his mouth or what if he has an allergic reaction? Jameson did well, none of the above has happened. He was not very interested in the cereal but he has eaten a little each time. We need to get him eating more because Dr. Coffman was a LITTLE concerned about his weight. Jameson is 4 months old and only weighs 11 pounds. He is not on the growth curve at all. Which means he is not even in the 5th percentile of his weight and height. Dr. Coffman said that he would like to see Jameson 6-7 ounces heavier and 1 inch longer. That would put him on the chart. So.. please pray for his growth. I have been told that the nutrition that we take in first goes to healing the body, then growing and then gaining weight. I really believe that Jameson has to work so hard just to produce skin that he is always behind on growing and gaining weight. It makes sense...over 80% of his body is blistered.

Nicholas and Zachary have just realized that Jameson has changed our lives. They have made many comments about my ability to spend time with them. WOW!!!! That was really hard to hear. I told them that I understood and then went into the bedroom and cried. It is hard enough to live with the daily life of an EB child but when your other babies are struggling....well that is too much!!!!! There are some days that I don't even have the strength to deal with my own emotion, and then to handle other's is VERY overwhelming!!! I try to remember that our diagnosis was the best diagnosis. I try to remember that this is only for a season. And I try to remember that there are others with worse conditions than us. But, I am tired and selfish. I want what I want and God is not doing enough. How stupid of me to say!!!! Honesty is something that I don't struggle with. God knows my heart and bottles my tears. He understands my emotions and still loves me all the same. I love knowing my position in Christ...unconditionally loved and there is no judgement in his relationship with me. The ups and downs of life, I know, are hard for many. My only advice would be, to myself, and to you- is take it to Jesus. Anything and Everything!!!!! He wants to hear it all. Just think about how much we want to hear from our children...He wants to hear from us as well!!!!

Love you all,

Friday, November 14, 2008


We saw the cardiologist yesterday and did not need the eco-cardiogram. Praise the Lord!!!! The doctor told us that we do have a slight murmur and that she wants to see us again in 3 months. I was very impressed with the office and how they were very accommodating to us. Everything went soooo smoothly. God ALWAYS goes before us and makes our paths as bump free as He chooses. I stand amazed at my Lord and Savior and His care for us and Jameson!!!!

People are always asking how is Jameson doing....I find that question really hard to answer. He is improving. Since birth, he has new skin on his ankles and knees. Jameson continues to blister and his skin is very red and hot. I see him everyday and it is hard to see the improvement. But when friends and family come over every other week or so they see his skin improving. Their encouragement is such a blessing!!!! If there is one area that I would like to see the most improvement is would be his little hands. His feet are looking better but have a ways to go. Please pray that his little hands and feet stop blistering and improve.

OH!!! Jameson is gaining weight and thriving. Thanks for praying for his weight gain. Jameson is smiling and cooing (spelling? making baby noises). He is such a great little guy and I cannot wait for him to meet you all!!!!


Saturday, November 1, 2008

Getting much better

I think we are getting better. Jameson's cough is MUCH better and he does not have a stuff nose anymore. We are so thankful this cold did not take us to the hospital. I am also very thankful for our pediatrician. Dr. Coffman was off on Wed. and he personally called to get us in the office with the exact doctor that he wanted us to see. He is so over cautious with Jameson and that makes me happy. He will see us for any reason.....even if I am just being paranoid! Dr. Coffman asked if I was as up tight with the other boys as I am with Jameson. I said NO!!!!! The other boys have healthy skin and Jameson doesn't. I told him I have every reason in the world to be paranoid....he laughed and agreed.

Halloween was fun. It was not cool enough to take Jameson with us; plus, he was sitll getting over his cold. He stayed at home with my mom and dad. The boys did go as mummies. They had a great time. Todd and I had to bandage them....WOW...what a job. I think they have a greater appreciation for what Jameson has to go through everyday. It took forever to wrap them. Oh!! Just for those who may want to wrap their kids as mummies next year remember they may need to go to the bathroom. We had to learn the hard way.....unwrap and then wrap again.

I was talking to another Eb mom and she gave us some great advice. Other mom's of Eb babies really are soooo helpful. I have such a fear doing anything different with Jameson. I want to wrap him the same, hold him the same, and really not change anything but his diaper. This wonderful mom told me that doing things different is good. She told us it is sorta like a risk-reward thing. If you don't take the risk to do something different then you will never know if something else may work better. Well.....I did not wrap Jameson's arms on Friday. I put this other clothe-like material on him. He did still blister but not anything like I thought he might. I was just proud that I did something different. On Saturday, I did wrap his arms like normal but I believe that I am learning to trust and not fear the unknown. I was praying today and expressing my anxieties with Jesus. I was encouraged by the peace that I felt. The Lord made it clear to me that I needed to find joy in the little triumphs right now. I need to find Jesus in even the little things (like wrapping him differently). I am always asking Jesus for the BIG answers to pray....when really Jesus is all over answering the little things and I just needed a little reminder. I will find joy in the little triumphs in life!!!!

Thanks for praying for Jameson. I do believe your prayers kept us out of the hospital. We are thankful for each one of you!!!!


Tuesday, October 28, 2008

Still stuffy

Jameson is doing OK. He still has a stuffy nose,a cough and just a little crabby. He is taking Albuteral (spelling??) in syrup form. We just pray that the medication helps open up his air way passages. Who knows......our Jameson never seems to make life easy!!!!!! I live wondering what will be next=) He is such a trooper.

He has found his little hands and is now rubbing his face. He has boo-boos on his cheeks again. A wonderful friend has made him some cute, soft mittens and that is helping. It makes him sooooo mad when we try to keep him from rubbing his face. He definitely has a strong will and a strong desire to get his way. Just like his Daddy=) ha-ha!!!!

We have an apt. for the Eco-cardiogram on Nov. 13th. I am still a little nervous, but I know that God will go before us. Just think about how God has gone before us in every situation that we have gone through with Jameson. I stand amazed at how strong the Lord is and how weak I am. I often forget how the hand of God has guided us throughout Jameson's life. Remembering the goodness of God is a remarkable thing. I know that we can go through many things because of what God has already brought us through. I am challenged everyday to remember the goodness of God because the struggles of this disease can causes me to be very sad and discouraged. There is a great song......"God is good All the time and All the time God is good".

Thanks for all of your prayers.


Monday, October 27, 2008


Okay you have all given me a complex. I haven't written the update in weeks now and when we logged on tonight to read "all your comment" ...we had none! Are you trying to tell me that Melisa is a better "blogger". :)

Melisa took Jameson to Dr. Coffman this afternoon and Jman has RSV. It's a cold that a baby gets that goes to his lungs. We have medication that he will take until tomorrow and if the medication doesn't help the cold we will have to spend some time at Arnold Palmer Hospital again. The poor little guy can't seem to catch a break.

We will keep you posted as soon as we know what's going to happen.


Sunday, October 26, 2008


Jameson has a cold and it's driving him crazy (not to mention it's driving us crazy too). Combine the cold with the reflux and you have a very interesting spit-up routine. The poor little guy has a nasty cough and we will be calling the Dr. first thing Monday morning. The bulb syringe isn't an option because we can't take the chance of blistering the inside of his nasal passage. Please pray that he will be well soon.

On a positive note...Jameson's eye contact improved by leaps and bounds this past week. He now will lock eyes with you and then smiles, almost on command. He is such a content little guy considering all the things he has to put up with. What a blessing he is to us.

That's about it for now. I don't have a lot to say because I'm to upset that the Rays are getting killed (baseball really isn't that important).

By the way, we have been out of the hospital for over 5 weeks now!!! Praise God from whom all blessings flow. He is so good.


Sunday, October 19, 2008


A great friend brought over that pumpkin wrapped in bandages for Jameson and we loved it!!!! The boys are all going as mummies for Halloween (just for Jameson). I never thought seeing my child wrapped in bandages could be so cute but boy is he CUTE!!!

We went to the doctor and Jameson has gained 1lb and 1 1/2 oz in one month. We were happy. Dr. Coffman came in to see Jameson and he was sooooo surprised at how good he looked. Thanks for ALL of your prayers; God is doing great and mighty things because of you praying for Jameson. The doctor did hear the same heart murmur. I will be making the appt. this week to go in for the Eco-cardiogram. Please pray that we will have no complications and the murmur is something that we will grow out of. I have been given some great advice about going in for the the first appt. of the day, and just unbandage as little of an area as possible. WOW!!! I get a little nervous about all of this. Please pray for me=)

A friend came by the other day that had a baby just 10 days before us, He was very cute with amazingly beautiful skin!!! I had no idea how seeing that baby really affected me. I was greatly saddened by what they had......a perfectly normal baby with perfectly normal skin. I cried ALOT. I was so sad that we were going through all of this and really did not handle my emotion well at all. I felt such guilt. I never want to look at what God has given someone else and think that I got the shaft. I felt sorry for myself for all day. I know that there will be good days and bad......but that was one of the worst. I have learned a great lesson though.....I don't have a baby with normal skin; I have a baby with perfect skin. God did not give me the shaft; He gave me everything that He wanted us to have. God wanted us to have an EB baby. We were given so much more than normal. Every time God reminds me of what He has given me, I am so humbled. I want so much to look at everything that has happened in the last 14 weeks and only see how the hand of God has moved and work in my life and pray that the lessons He is teaching me I am learning. If God doesn't give me anything else, I know that today He has given me ALL that I could ever have imagined...a wonderful Savior and a beautiful family.

Thanks for praying for baby Jameson. One day, we will all be praising God for his complete healing!!!!


Monday, October 13, 2008

Sorry it has been so long

We have now been out of the hospital for over 5 weeks. WOW!!! I thought that would never happen. I think, early on, we were in the hospital every 7-10 days for the first 6 weeks of Jameson's life.

Jameson is doing OK. We are still getting alot of blisters everywhere. He is even getting them around his mouth and inside of his mouth. He is still eating OK. Jameson has not increased his caloric intake; he is still just taking the same amount of formula as he was at 3-4 weeks old. That concerns me a little. I would love to see him eating more (prayer request). I will be taking Jameson to the Dr. on Thursday just to see if he is gaining weight. I have not taken Jameson back for the Eco-cardiogram. I will see if there is still a need for us going when we see the doctor on Thursday.

I am still changing Jameson's bandages daily. Some people have said that maybe we could go every other day.....but I am a chicken. The last time we went every other day, we were in the hospital within 5 days. He just seems so much happier when his bandages are clean. I would too if I were him.

I often wonder if tomorrow will be the day that God chooses to heal Jameson. I have to say, there are many days when I am really impatient (like today). I often want this disease to be over and to have a baby with amazing skin. His skin is improving, but just not as fast as I would like. I am learning to be content (but not always happy though). I am still thankful for God's answer to me awhile ago. WAIT!!!! I feel like a child some days...stomping my feet at God and saying I want this NOW. I have a long ways to go but I am still running the race. In the end, my desire is to glorify Jesus and grow closer to Him. "To God be the glory GREAT things He has done".


Thursday, October 2, 2008

It is OK

Normal is such a relative term....and it is at this point in our lives that EB is becoming normal. It is OK to have a baby with EB. I have somewhat come to terms with the day in and day out routine of living with this disease. Better yet, I am loving an amazing baby. He brings to my life amazing joy and fulfillment ( worries and fears as well). Jameson is the baby that Todd and I prayed for. We were sorta' skeptical of having another child. I had been challenged by a wonderful friend to get up early (5:30 a.m. to be exact) and spend time with the Lord. I took the challenge and I was very blessed by what God had to say to me. The Lord kept taking me to scriptures about having another baby. I told the Lord "NO, I don't think that is what we should do" and again the Lord consistently over many days made it very clear to me. I told Todd and he was not opposed to the idea that we should have another baby. Well......first try and we were pregnant with Jameson. I was SHOCKED!!!!!! Truly, we were meant to have a baby!!!!!! I am so happy that Todd and I were obedient. I know that God had to make this whole experience point directly back to Him. Otherwise, I really could not have handle what we have been going through. God asked Todd and I to have this baby. We said yes and now we have Jameson. We feel so privileged to be chosen by God to walk this road. As hard as it is!!!!!!!! It is gratifying every step of the way. It is so true what God says...He will never give you more than you can handle. Even when I tell Him it is too much. He reminds me, without His strength, I cannot do it, but with Him I have the ability to manage all of this and glorify Jesus through it. I often wonder why I say so much. You did not need to know all of that but I just felt led to tell ya'.

Jameson is still having A LOT of blisters on his back and belly!!!!!! Please pray for complete healing. His little legs and arms have not ever looked so GREAT!!!! His ankles and feet and hands are improving. Thanks for all of your prayers, they are being answered!!!!!!!


Sunday, September 28, 2008

New Pictures!

Just when you think that you have it all figured out something changes. Jameson is growing and the bandage sizes are changing. I am not complaining BUT I had the sizes of each bandage down to a science. He is definitely growing and getting older. He will now follow you and he really recognizes all of us. Especially his bother ,Zachary, who is very loud.

I had to cancel the Eco-cardiogram. I will reschedule this week and let you know how that goes. He had an infection and I thought it best not to take him into another Doctors office. When he has the Eco-cardiogram, I will need to unbandage his top half. That scares me. He has some open areas that would be exposed. And if he equipment is not very sterile Jameson could pick up another infection. I am definitely a germ freak now (I never was before). Pray that the Doctor does not hear a murmur and we will not need to have the test.

"...I focus on this one thing: Forgetting the past and looking forward to what lies ahead, I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us." Phil. 3:13-14 I love these verses.... what a race we all run. I pray that I run my race well.


Wednesday, September 24, 2008

What an amazing life....

I am learning to live out the verse "Do all things without grumbling or complaining". Do I grumble and complain... YES. But the Lord is teaching me why I should not complain. There are far worse things others are going through than us. Our lives are different but we have the hope of God healing Jameson completely. When I think of how much our lives have changed, I step back and remember what it was like just 9 weeks ago...WOW, God has brought us VERY far. I told the Lord ,just after we had Jameson, "There had better be an amazing purpose for all of this pain". He has since answered me. I am learning more about my Lord and Savior because of a 10 week old baby. I see what he goes through in a day and he still smiles. He is one amazing little boy!!!!! I have no reason whatsoever to complain about one thing. We have received an amazing blessing....Jameson.

I am seeing an improvement in Jameson's skin within the last 3 days. Today, I changed his bandages and there was NO infection. His little back and belly are still not good, but they are getting better. He has more pink baby skin now than he has ever had. I can only hope for the day, when I am doing bandage changes and Jesus says "today is the day that I will take the blisters away and heal Jameson completely". Todd and I eagerly wait for that day. This is our prayer.

I started thinking about the future yesterday and got a little nervous. How am I suppose to put a spoon in his mouth without making blisters? How is he going to learn to hold on to rattles and toys when he is always wrapped? How will I ever let him ride a bike or a rip stick like his brothers? I really worry about these things. I know that I should not worry but I DO. How do I ,as a mom, not think about all of those things? God will take care of all of my anxieties, I know...I just hope that Jameson will not be the adrenaline seeker like his Uncle Kent(who has been air lifted off a mountain because he wrecked riding his bike down a mountain in Colorado). We love you Kent! =) Maybe, Jameson will just play golf.


Sunday, September 21, 2008

Just a little fussy

Well, I think you might know what that means (being fussy). Yes, I we are fighting ANOTHER infection. I had no idea how important our skin was, until I had a child that has open wounds all over his body. He is learning to like his daily bleach bath (2 gallons of water to 1 tsp. of bleach). It is like swimming in a pool, I have been told. We have this yellow inflatable ducky tub, his beak quacks, and I have an idea that Jameson is going to hate to hear "What does the ducky say!!!?" He doesn't mind the bath, he just hates having his bandages off. I was so scared of giving him a bath at first. I thought that I would hurt him..... so I called Sarah and she came over and gave him his first bath. (Thanks alot Sarah) I have gotten a little more confident with putting him in the bath but it still freaks me out. Please pray that the infection will heal and that he will not need to go to the hospital.

Jameson is becoming more aware of the things around him. When I am changing his bandages he will try to move my hand with his foot or fight me when I need to straighten his arm. He is so strong, both physically and strong-willed. I guess his strength is what has helped him through the first 10 weeks of his life. Can you believe he is 10 weeks old? Some days it feels like he has been around for an eternity, other days, it is just like yesterday that I was pregnant.

We did not go to church today, but we had church at home. The subject of faith came up. Zachary asked the question, "What is faith?". Todd told him that faith is believing and trusting in God even when we don't see Him. WOW! Can you imagine if a 5 year old can understand what faith is? I pray that our baby Jameson will teach our 5 and 7 year old boys (as well as myself) what faith is. I have such a faith in Jesus for saving me, but do I truly have the faith that He will heal my baby? Yes I do. Why? because He is faithful to do immeasurable more than I can ask or think!!!!! I love a faithful God who loves me and loves hearing me call out to Him. He loves that Jameson's life is teaching me and Todd and the boys who He is and how He works out everything for His good.

Thursday, September 18, 2008


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.


Tuesday, September 16, 2008

Answered prayer

I have had many, many hard conversations with Jesus within the last week. He has heard my fears, caught my tears (I did not mean to make a rhyme), and listened to my ANGRY outbursts. I cannot begin to explain to you how hard this disease is to handle. I am very tired and I know that tomorrow I will do it all over again. Please know, I am not complaining. I am living a life that I never thought I would be living. I am learning to live different. I asked the Lord yesterday,"Where are YOU in answering my prayers?". Am I being told YES, NO or WAIT? He said Yes and WAIT. Today, we got the biopsy results. We have a the most severe form of Simplex. PRAISE THE LORD! I asked the Lord if He was not going to heal Jameson right now that He would give us the most simple form of this disease. He answered my prayers (and the prayers of MANY other people as well). You can goggle Dowling-Meara Simplex and find out exactly what we have. But the good news of this diagnosis is between early to late childhood we can grow out of EB. This is Jesus' answer to WAIT. He can choose to heal Jameson tomorrow or 5 years from now.... As it was before the diagnosis, it is ALL in His time and in His hand. We are truly thankful for this amazing news. I praise the Lord for this outcome. He always shows up right when I need Him. He is never a second too early or a second too late.

I think that we have beat the infection without going to the hospital. YIPPEE!!!!! That makes me super happy. We also went to the Dr. today and Jameson weighs 9lbs and 7oz. He has gained 1lb and 5oz in 3 weeks. That is amazing!! Typically, EB babies have a hard time gaining weight but thank the Lord, Jameson is doing GREAT!!! We did get a bit of news you guys can pray for. The Dr found a heart murmur and we need to have a eco-cardiogram. He said that he is being over cautious with Jameson but that he needed to be this cautious because of the disease. A murmur to a normal child may not be a big deal but to an EB baby it presents just another complication. If he has a defect in his heart that is causing the murmur,and if Jameson get an infection ,this infection, could cause his heart to become infected. we go to another Dr. Please pray that this murmur is NOTHING. Also, we need to know if Jameson is anemic because this could cause a heart murmur as well. So, he will need to have blood taken sometime this week.

I feel like I have told you guys a ton of stuff. Thanks for taking the time to keep up with means so much knowing that you are praying for Jameson and our family!!!! We love you all.


Sunday, September 14, 2008

Infection again.

Jameson is fighting infection again. This time it's on his stomach and we are desperately battling it so we don't have to go back to the hospital. We have changed his body bandage 4 times in the past 36 hours to get the infection off his body (very tiring). We also have given him special baths. He seems to be uncomfortable right now. He doesn't have fever though which is a good sign.

Sorry for the short update, but just wanted you to know what is going on.

Thank you for all your prayers and support. We truly have the best family and friends in the world.


Wednesday, September 10, 2008

No more stitches

We are completely healed from the hernia surgery. Yesterday, we went to the Dr. and he took out the stitches. He was very pleased with Jameson's healing. We have truly had some of the BEST doctors taking care of Jameson. The Lord has truly taken the best care of our little boy!!!

Jameson is doing very well. This is the longest amount of time that we have been home without being sick. I pray that we have seen the last of hospitals and pullout beds in the hospital rooms. I am finally becoming a little more relaxed with the baby and his disease. The hardest times for me are not not knowing how to help him or how to console him. I am coming to know his many cries. He has a cry for being hungry,sleepy and the famous" just pick me up cry". The pick me up cry works really well on the Mimi's(grandma's). I am also learning about his EB cries.....he has those cries too. There will be times when he is just uncomfortable and he has a hurt cry. These cries hurt my heart and all I can do is pray for Jesus to comfort him. And then he has the cry "of leave me alone". Jameson, many times just does not want to be touched. I have learned that after bandage changes DO NOT TOUCH HIM!!! He has been touched for 2 hours and he will let you know that he is done. My favorite cry is the one that stops his crying when I say, "Mommy loves you". He knows that Jesus loves him, and I am just thankful that he is learning that I love him too.

I was reading just this week in Oswald Chambers about a river. He was saying that a river will have obstacles that will hinder its course. For a while the river will be blocked but soon it will find a way around the obstacle. Or the river will drop out of sight for miles and then emerge even greater than ever. The point in saying all of this is...there will always be obstacles or trials in life. The strength of the river is when it stays on the path set before it, not stopping or going on its own path. The river needs to stay close the its Source in order to find strength to either get around the obstacle or the Source will remove the obstacle. I pray that Todd and I never focus on the obstacles or the difficulties in life. I pray that we stay focused on the Source, because the Spirit of God will overcome All of our obstacles!!!

Please continue to pray for a miracle, God is still in the business of complete healing! Jameson's hands and feet are still really yucky. Please pray for the callouses to be healed and completely go away. These callouses hinder his flexibility and movement. Also, tell Jesus Thank you for us....Jameson has new skin growing on his ankles and he has a round pudgy face. He is gaining weight and getting bigger. I have had to adjust the size of his bandages many times in the last 3 weeks. PRAISE THE LORD!!!!!!!! OH yeah.... Pray for NO MORE BLISTERS!!!!!


Sunday, September 7, 2008

Sunday's are great

We love to go to church on Sunday's. Todd's mom or my parents stay home with Jameson. This makes Todd and I really happy because we love to worship as a family. Also, it is important for the boys to have our normal life and that includes church every Sunday. After a hard week, it is so needed to stand and enjoy corporate worship. To hear believers singing and praising the Lord always makes me remember what is really important. Life maybe hard but not hard for the One who is the in control of it all.

Jameson has had a great couple of days. He gets his days and nights confused every other day but that is a typical 8 week old baby. His incisions are looking really good. I will be glad to get the stitches out, hopefully on Tuesday. The bandage changes are still tough. He continues to have new blisters daily. There will be a day when God allows there to be one day without blisters and then 2 days and then 3 days .....and so forth. Or at least this is my prayer. You would not believe how brave and strong Jameson is during his bandage changes. He does have discomfort but he handle his disease so well. He knows when we walk into the bathroom what is about to take place. I was told ,early on, to have a place specifically for his bandages to be changed, and never do his bandages in his room. This could cause him to not want to go into that room. It is amazing how smart babies are.

Jameson has some really bad areas that are continuing to blister. Please pray for healing in these areas: back, stomach and ankles. His hands and feet are looking OK. Please pray for his range of motion and function. He always has his hands bandaged and I am not sure how he will be able to grab and hold on to things. His little ankles have been the weakest area to grow skin. Please pray that Jameson will walk and not have too much of a delay. All of these requests are important, but mostly, pray that Jameson will come to know Jesus at a very young age.

We got a new camera so we will have new pictures of Jameson soon!!!! (maybe tonight!)


Thursday, September 4, 2008

Living life with us

Well, like always, I hesitate to tell you of the "Yuck" times. Last night, Jameson cried ALL night and we thought that we would be back in the hospital today. In the past, he would cry all night and then start with a fever and back to the hospital we would go. He was soooo uncomfortable and we were unable to console him all night. A pain management Dr. told us that staff infections really itch and cause a great deal of discomfort. So we thought he might have another staff infection because he was so unbearable. As good as yesterday was, last night and today's bandage changes were just that bad. He had many more blisters today than yesterday. I hate seeing him with so many blisters, and I cannot tell you how much it hurts to see your baby in such a condition. I struggle with the ups and downs a lot. It seems like it would be easier if it were hard all of the time or either easy all of the time. The inconsistency of this disease is AWFUL!!!!!!!!!!! In my heart, I think everyday will get better but reality says it will be this hard for a while. I do know that the Lord will NEVER give me more than I can handle. But I told the Him just today that it is too much and He needs to make the blisters stop. I came to understand something very special about my Lord and Savior today. I learned that He listens and has amazing compassion towards me. He helped me to know that it is not my will but His that is being accomplished. I just have to do what He has called me to do and that is take care of my beautiful baby boy and stop trying to do this by myself. He wants to hear my frustrations and my desires, but He also wants me to glorify His through this valley.

Love, Melisa

Wednesday, September 3, 2008

Great doctors visit

On Tuesday, we went back for a follow-up with the surgeon and he said that Jameson was healing. The doctor was even unsure of how healing was going to take place and he was pleasantly surprised at how well Jameson looked. We are going back to the doctor next week and hopefully get the stitches out.

Things are looking better today (the roller coaster of emotions and blisters) and his skin is showing improvement little by little each day. I try not to get ahead of myself, but I often think of the day when God so chooses to show us His future. I pray that we will grow out of the blistering and wrapping and that Jameson will have a "normal" life. "Normal" is so relative and I know that Jameson is perfect. I just want my "perfect". God often reminds me that I am not promised tomorrow (so quit thinking of the future) and just be obedient today. Being obedient today will increases my trust for tomorrow( if God gives me tomorrow).

Thanks for ALL of your prayers!!! PLEASE DON"T STOP. Your prayers wake us up in the morning and put us to bed at night. We truly could not do this without your prayers.


Sunday, August 31, 2008

Friends are amazing!

Let me tell you how special the body of Christ is.... Todd went to one of our high school's football games on Friday night and saw people wearing bracelets. Then a good friend said to him someone is wearing a bracelet that reads "Pray for the Setsma's". Wonderful friends had these bracelets made up to remind everyone to continue to pray for us. She said that it would be easy to continue life and not remember how much we need your prayers and that is why they made these bracelets. It that not amazing? God is using so many people in our lives to point us to Him. We truly are feeling the love of God through all of you guys.

Jameson is doing great. He is sleeping a lot and eating really well. His incisions look good. I am a little nervous about how they will heal. I am not sure how Eb babies heal from surgery. So, please pray for complete healing (quickly). We are continuing to put a topical antibiotic on the areas that are open with the stitches. Our concerns are always infection.

Oh! I forgot to mention the biopsy. While the Dr. was doing the surgery on Thursday, he also took a biopsy of Jameson's skin. We will hopefully know the results in a couple of weeks. Please pray that the results come back conclusive because the 1 st biopsy was inconclusive. The results will not change what we do for Jameson; it will only give us a look into what our future with Eb will look like.

Thanks for keeping up with us and praying for our family.


Friday, August 29, 2008

Home from surgery

We made it home today around 6:30 and it feels sooo good to have the surgery behind us. What a relief to know that all is well ,this minute, and Jameson is doing great. He is eating, pooping, and sleeping, all those things we take for granted, he is doing. I was very surprised to see the incisions. They are both about 1 1/2 inches long. Dr. Miller said the hernias were pretty large and that everything looks great!!

I never imagined I could be so tired from sitting and just holding a baby. Our whole family is exhausted. Well...Nicholas and Zachary aren't tired ...just me and Todd and his mom. The boys are doing really good. Thank you for praying for them.

When I look back, all of 2 days ago, and see how everything has unfolded, I am amazed. We were doing dressing changes a while ago(a month) and some nurses and wound care were there. I made the statement that Jameson looked so good and I could not say it enough. I kept on saying he looks sooooo good ..... One of the nurses said to me I thought you were praying and asking God to take away the blisters and help him to get better. I said yes that is what I am praying, and she said," then why are you so surprised". I was embarrassed and also convicted. I should not be so surprised when God answers my prayers. God has done great and mighty things in our family for the last 6 weeks. We are amazed and thankful for ALL that He has done. So, don't be surprised when God answers your prayers. He is able to do immeasurably more than we can ask or imagine. Just look at what He has done and continues to do in our life.

Love, Melisa

Thursday, August 28, 2008

Successful Surgery

We are out of surgery and it went very well. He is now resting with us and looking good. Thank you to all of you for your prayers. We praise God for all of your prayers and calls.

Jameson's anesthesiologist was amazing. Her knowledge of EB and how to handle Jameson impressed us. She knew other methods of putting him to sleep instead of intabating him. Dr. Robinson did not have to put anything down his throat. He had something like an epidural. This worked great!!!!!

We will keep you up to date.

Tuesday, August 26, 2008

Home and back tomorrow

Wow!!! That is an under statement. We came home from the hospital last night around 7:30. We were told that the blood they took on Friday was contaminated. From my understanding, all of the blood taken that day came back positive for bacteria. So.....we were able to leave the hospital taking 3 types of antibiotics. This is a good thing because we were going to be put on antibiotics anyway in order to have the hernia surgery. The surgery is going to take place early Thursday morning ,and we will be admitted into Arnold Palmer Hospital on Wednesday. I would be lying if I said I am not scared to have the surgery. There could be many complications that arise. We are praying for NO complications. I know that our Heavenly Father has gone before us MANY times before and HE will continue to do so. God says if we have the faith of a mustard seed we can move mountains....well, I want that much faith to move this mountain for our baby Jameson. He has overcome so many things. He is now a pound heavier, 2 weeks older and more cute :). He is one of God's many blessings in our lives.

I have changed my prayers many time through out this journey. My prayers have been ones of silences, anger, pain, and frustration. All the time, experiencing what it is truly like to have a personal relationship with Creator God. He gives us emotions and we have had many. At times, I have wondered is He a loving God? If He was a loving God ;then How could he have made it so clear for us to have this baby? His will WAS for us to have a healthy baby and somehow there was a MISTAKE(see this is where my frustration is). Someone prayed the day Jameson was born that this skin disease did not surprise God and what an amazing statement. God DID NOT MAKE A MISTAKE. He made a perfect little baby boy. Jameson has 10 fingers and 10 toes. He has beautiful lips and that I cannot stop kissing. He is loved by soooooooo many and most of all he is loved by Jesus. What I think Jameson is missing (his skin), is really a lie . Jameson has it all; he is loved by an amazing God that gave him everything he needs for life and godliness. What a wonderful life he has; he is right in the center of God's will. That is true PEACE!!!!


Sunday, August 24, 2008

Doctors, doctors, doctors

We have now met more doctors that we ever care to know. Two more were added to the list today (of course they are wonderful people but we would have rather met them under different circumstances). An infectious disease doctor and a hematologist. You are probably already catching on to why we met both of them. You guessed it - Jameson is showing infection in his blood. This is really bad news. They have taken more blood today to run tests again to make sure the first results were not just cross contamination but rather actual infection.

If in fact the infection is in his blood they have to give the antibiotics through IV. Due to Jameson's EB the IV is complicated since they can't tape the IV on, so they have suggested going in through the jugular or femoral which requires surgery. Obviously we are praying that the first blood result's were due to cross contamination!

Please pray for baby we know you are.

Saturday, August 23, 2008

Still in the hospital

We are still here in the hospital waiting for the results of the cultures. We are growing another infection but are unsure what it is . We will wait until tomorrow and the doctors will let us know if we can go home. The infection is not in his blood which is good. Our hope is to go home soon, because the infections that are in the hospital are easily caught and hard to get rid of.

The doctor today said this may delay our hernia surgery. Our pray is that we will be able to have the surgery and just get it taken care of.

Jameson is still not eating well. He is so tired he usually falls asleep before he finishes his bottle. He was eating 4 ounces per feeding but now about 2 to 2.5 per feeding.

Faye, Melisa's mom, watched Jameson tonight for a couple hours while we went to a friends birthday party. It was so wonderful to be with incredible friends and "get away" for a little while. It was a true blessing. By the way, Charlie is now over the hill!!!

We want to thank you all for you encouraging comments. We read them all and they lift us up during this challenging time.

Friday, August 22, 2008

Arnold Palmer Hospital Again

Don't you love it when people know your name. Well...not when you walk into the emergency room and they greet you by name and remember your Blue Cross Blue Shield number by heart.

Jameson had an aweful night Thursday night. The fever and infection kept him up the entire night. Friday morning we were admitted into Arnold Palmer Hopsital. They have swabbed the infected areas and we are waiting for the results of the cultures. Jameson is on 2 antibiotics and a topical antibiotic. He is not eating very well because he feels really bad. He is sleeping a lot so hopefully this will make him feel better. From my understanding, infection is part of this disease. We just want to catch the infection early enough so that it does not get out of control.

The Dr. just came in and said the infection is showing in the lab as the staph infection which is consistent with the same infection he had a couple weeks ago.

Thursday, August 21, 2008

Another day Another trial

I often sit at the computer and pray,"Lord what would you have me say tonight?" I find myself struggling to tell you guys the truth because it is not the best of news and I am not a negative person. I want to tell you that the days are getting easier...but there not (right now). Everyday poses a new set of struggles. Today, I went to wound care with Jameson and his hands are in bad shape. They want us to see a hand specialist. Jameson has a lot of calcification on the tips of his fingers and the palm of his hands. This presents problems with his flexibility and movement. They are saying that it needs to be looked at because of the long term problems this may have with his development. I have been told by a friend and Eb mom that it will probably get worse before it gets better. This disease is so unpredictable and no two children are alike. Soooo...we are praying that the days are going to get better soon. We can only think about today and not tomorrow, because just thinking about 1 minute from now is overwhelming. Sorry about all of the heavy information. I cannot wait for the day that I will be telling you about him rolling over and his first steps. You are walking through the fire with us and I am so thankful for the walk. God never said that it would be easy, but He did promise to walk with us through the trials.

We have been advised to go to Cincinnati. Please pray that God would gives us wisdom in making this trip. I am fearful of taking him so far from home; when he is so young.

Wednesday, August 20, 2008

Unexpected visit to the doctor

We had a little scare today. Jameson started projectile vomiting last night and today. I thought it might be his hernia's, so I called the doctor. He said get to the emergency room or to our pediatrician. We immediately went to see Dr. Coffman and he said that it was not the hernias. He thought it might be the infection or something called pyloric stenosis. We are unsure what it might be sooooo.. the doctor said to just wait and watch.

You never know what a day may hold. I wake up every morning wondering what will happen next. I just take my fears and tears to the Lord and ask Him to handle the day. And He always does.


Tuesday, August 19, 2008

Tenative schedule for surgery

We spoke with the surgeon today and we will see him on Tuesday. He wants us to come and see him so that he can re-evaluate Jameson's hernias. Also, Dr. Miller is going to put baby J on an antibiotic for 2 days before surgery. The schedule ,as of now, is surgery on Thursday the 28th. His hernias are larger so now is the time to get the surgery done. Please pray that EVERYTHING will go well. We have waited this long to have the surgery because the anaesthesiologist has been out of town. This is already an answer to pray... having this anaesthesiologist be there to take care of Jameson. God has already gone before us and will continue.

We are still fighting an infection. It has not gotten worse or any better. He is still eating and sleeping well...Praise The Lord. It is just a waiting game to see if the infection will improve. I pray that this infection will not send us to the hospital. We are doing all that we can with a topical antibiotic and some home remedy things that other EB moms have told us to do. This is just another way that God is allowing us to trust in Him and wait to see Him work All things out.

Thanks for all of your prayers. We cannot wait to see how God is going to do great and mighty things for us and you through our perfect son Jameson.


Sunday, August 17, 2008

A little fussy

Jameson has been a little fussy for the past 2 day. This brings about fear for us because the last time he was this fussy we were in the hospital the next day. During dressing changes today, he had the start of some infection on both ankles. This is probably why he is being so fussy. His ankles have yet to improve since birth. They are still without new skin. The last 2 infections Jameson has had started with his ankles. Please pray that his ankles improve and that new skin will grow really fast.

I was telling Todd, just last night, it would be easier if it was bad all of the time or either good all of the time. Because what is really hard is the extreme emotional roller coaster we are on. Never knowing what tomorrow holds. That just reminds me of the verse that say we are not even promised tomorrow. We are walking second by second hoping that each day gets easier or God will give us the peace to walk through whatever He has for us that day.

I should be talking with the surgeon Monday and setting up a time this week for hernia surgery. Please pray that Jameson stays healthy enough for surgey and all of the doctors handle Jameson's condition with the utmost care.

Thank you for All of you prayers,
Melisa and Todd

Friday, August 15, 2008

He is growing!!!

I have to do bandage changes once a day everyday for I have said before. Well within the past 2-3 days I have noticed that the bandages were looking a little small. Jameson is growing!!!!!!!!!!! He is getting longer and rounder. That is such an answer to prayer. EB babies have a hard time gaining weight because they are working so hard to reproduce own skin. Just knowing that he is on the right tract with weight gain is so reassuring. We are very encouraged!!!!

Nicholas and Zachary just finished their first week of school and they loved it.


Thursday, August 14, 2008

A new normal

The days are getting a little easier. I am slowly learning Jameson's cries, his likes and dislikes. He is truly a great baby. I will never understand what it is like to be Jameson, but I do know that the hand of God is all over him. He will smile during his sleep and that just gives me such comfort knowing that he can rest peacefully. I am learning to love him in ways that only a mommy can. He touches my heart like no one else. I was having a bad day yesterday and I went to God with many question. Why? Why? Why? The Lord answered I will not know all of His secrets. In my devotions David Jeremiah said,"The secret things are God's determined, sovereign purpose. Our problem is wanting to know all God's secrets. But our responsibility is to take what God has revealed and work to understand it and implement it with all of our heart-and leave everything else to God". I do not need to know the why's(although my heart wants too) all I need to know is the ONE who is in control and trust in Him.

Jameson went to the hospital today for wound care. Once a week, he will go and the wound care specialists will take off the dead skin that I am unable to remove. This is a blessing because if the dead skin does not come off it will cause infection. I never knew what I was capable of doing until God gives you the strength to care for a child that cannot do the "normal" things in life..... such as produce skin. We are still having blisters daily and this concerns me but from my understanding this is common in EB babies. Our prayer is that the blisters will stop and his skin will continue to strengthen.

We are so encouraged by your comments and we cannot thank you enough for your prayers. We are finding joy in the mist of really hard times. And this can only happen because your prayers for us are being answered. Please tell Jesus thank you for answering your prayers and our!!! Please don't stop praying for us and baby Jameson.

Tuesday, August 12, 2008

Sorry for not updating

We have had a really hard time getting on-line for the past week. The latest update let you know that Jameson had not been sleeping very well. Well, for the past two night he has slept much better. Praise the Lord!!!! He has started to eat a little better. He gets so tired just reproducing skin, that eating is very hard for him. It will take 1 hour and a half just to get him to eat 3 oz. Our goal is 4 oz. per feeding. We spoke with a nutritionist and he is now on a 27 calorie diet. That seems like very little but it is enough to help him gain weight. He has yet to make it back to his birth weight. Needless to say, our day is changing diapers, feeding Jameson and changing his bandages.

I spoke with the pediatric surgeon today and we are trying to get Jameson into surgery next week. Dr. Miller, the Dr. that will be performing the surgery, is amazing. He has already spoken with the specialist in Cinn. about Jameson and has consulted with them as to the best way to treat him. There is also an anesthesiologist in Orlando that is from Cinn. Children's Hosp. that is familiar with and has done work on EB patients and Dr. Miller is trying to schedule the surgery around his schedule. We stand in awe of God's hand in all of this and working out the details of Jameson's surgery. Our little boy is so in the hands of a loving Savior that cares for him more than we do. How can we ever doubt His goodness to us?

The Lord gave me a song just after Jameson was born that Has greatly comforted me. It is a kids song but it shouts out the truth of God's word... "My God is so BIG, so Strong and so Mighty there is Nothing my God cannot do for you." We are trusting in a Big God to do Big things for Jameson. We ask for a miracle and complete healing. We ask this knowing that God's will is our desire. As a great friend prayed, "We would be selling God short if we did not ask for complete healing". So please continue to pray for Jameson and God's will to be done in his life.

Monday, August 11, 2008

Meet the teacher

Jameson had a good day. It's almost midnight right now and he is wide awake. I'm typing with one hand and holding him in the other. This takes hunt and peck to a whole new level.

I'm not a doctor but i think the infection is going away. Praise God! When we did the dressing change his skin looked really good. Off course that's relative but for Jameson it looked good. He seems to be getting less blisters which is a good sign. We are still of course praying for complete healing.

We are getting into the "life routine" now a little bit. The boys go back to school on Wednesday and this big boy will go back to work. We went to school tonight to meet the teachers. Z has Mrs. Cline and N has Mrs. Millsaps. Both answers to prayer and wonderful teachers. We have been praying for the boys teachers since school got out in May and God put them in the perfect place. Please pray for a smooth transition for all of us. There are so many unknowns. How will Zachary do away from Melisa? How will N do this school year and is his eye tracking issue corrected after all the hard work he has done? How will M do with J at home alone? Will she be able to attend centers in Z's kindergarten class? And many more...

We are blessed to have awesome friends. M's good friend, Marcy Funk, handed her a schedule tonight that layed out from now until December. Each day one of M's girl friends is going to come over and help M with the 2 hour dressing change. What a picture of awesome giving and servant leadership. An incredible blessing. We are so thankful.

Speaking of thankful...we want to publicly thank my mom for being with us the entire first month. We couldn't have done it without her. M's parents are here now for 2 weeks and are helping in every way imaginable. We are blessed in so many ways.

We will be talking to Dr. Miller Tuesday to see when he wants to schedule the hernia surgery. We will keep you posted. We would like to wait another week or so to allow Jameson to get some good strength and allow him to be out of the hospital for a little while.

We love you.


Sunday, August 10, 2008

The past two days have been very normal. Praise the Lord! Jameson has his days and night confused. Todd and I have been up ALL night for the last 2 nights. Pray has taken on a whole new meaning........ Please Lord make Jameson GO TO SLEEP. Needless to say, he has been a typical 4 week old baby for the last couple of days and we are thankful for that.

Friday, August 8, 2008

Home Again.

Jameson is home and doing well. He will be on oral antibiotics and ointment antibiotics for the next 5 days to get rid of the staph. He was up until 11 p.m. last night with his eyes wide open smiling away. It's so good to see.

Pray requests:

Jameson's thumbs. He holds them in the palms of his hands with his fingers wrapped around them. With the PT's help we have now started to wrap his hands in such a way as to get the thumb pulled back and his fingers much staighter. The PT says unless we start working on this asap it can be a potentially long term problem.

Jameson's bowel hernia surgery. It's not scheduled yet but will most likely take place next Thursday.

Jameson's original issue, EB. Please pray that his skin will continue to strengthen. Right now we see a lot of blisters due to the infection, but in the smallest ways can see that parts of his skin are becoming slightly stronger. Slightly is the key word but we will take it!!!

I would like to share with you what I was reading Wednesday night as I spent the night in the hospital with Jameson.

"We have troubles all around us, but we are not defeated. We do not know what to do, but we do not give up the hope of living. We are persecuted, but God does not leave us. We are hurt sometimes, but we are not destroyed... So we do not give up. Our physical body is becoming older and weaker, but our spirit inside us is made new every day. We have small troubles for a while now, but they are helping us gain an eternal glory that is much greater than the troubles. We set our eyes not on what we see but on what we cannot see....."
I Corinthians 4:8,-9. 16-18

We love you,
Todd and Melisa

Wednesday, August 6, 2008


They admitted us into Arnold Palmer yesterday like we expected they would. All sorts of tests have been run and staph infection and psuedomonas infection (which has a very bad odor) have been found. They attempted to put an IV in his head but were unsuccessful and since his skin is so fragile right now they were not able to put an IV in at all. The Dr. consulted with Dr. Lucky in Cincinnati and they feel comfortable giving him oral antibiotics and an ointment antibiotic that we apply with bandage changes.

Please pray that Jameson continues to eat. He is so lethargic and has very little appetite. We don't want to have a tube feeding him.

Also, please pray that Jameson doesn't have bacteria in his blood. The preliminary results show that he may. We will find out in 24 hours. If it is in his blood severe complications will result and they will have to surgically place a line (like an IV) to administer antibiotics.

The prayer of a righteous man accomplishes much. Thank you for praying so fervently for our baby Jameson.


Tuesday, August 5, 2008


Please pray for baby Jameson right now. He had a horrible night with many blisters. His temperature is up to 101.6 which is bad for an EB baby. We have been told that when he gets a fever it may present itself with blisters all over his body.

We have a 12:30 appt with the pediatrician and Sara, our good friend and EB mom, says that they will most likely admit him into the hospital.


Monday, August 4, 2008

Double Trouble

Today was a great success. We went to see the surgeon and he was amazing. Dr. Miller was so attentive to our concerns and questions. We felt like he really listened to what we had to say. He was not even the doctor we were planning on seeing, but God had that all worked out. Dr. Miller, a very confident physician, told us that he would call a friend of his from med school at John Hopkins that performs surgery on EB patients at Cincinnati Children's Hospital . He actually works with the leading EB specialist in the country, Dr. Lucky. That is how God works out All things!!!! Even the anesthesiologist that will put Jameson to sleep came from Cincinnati and has work with EB babies . This really shows Todd and I that He has greater plans and will always go before us. We truly stand in AWE of how the hand of God is upon us and we have nothing to fear. He has All of the details worked out. We just need to trust and believe that his way are sooo much higher than ours.

We did find out that Jameson has two hernias not one. Dr. Miller will repair both at the same time. Jameson will be in the hospital hopefully just overnight. We are unsure of the date of the surgery. We will know within the next couple of days.

Thank you for all of your prayers and support. We are thankful for all of you.

Friday, August 1, 2008

The Roller Coaster of Emotions Continues

Sorry I haven't updated you in a couple of days. Nicholas and Zachary really needed some quality time with us so that's been our focus since returning from Miami Wednesday evening. Easier said than done since Jameson takes so much time at this point of the game. N and Z are handling things so well and we strongly believe it's because of all your prayers. Thank you.

Bad news today. We noticed Monday that Jameson developed a bulge above his privates. We watched it closely all week. We met with Dr. Coffman, J's pediatrician, and learned the bulge is a bowel hernia and J needs to have surgery ASAP. Dr. Coffman will be calling us tomorrow to set up a meeting with the pediatric surgeon for Monday. Dr. Coffman is very concerned that the lower intestine will get stuck outside the tear and lose blood flow - then J will be in grave danger. They will have to incubate him which will cause blisters internally. Anyway you look at the situation it's bad news.

We are very concerned about infections that are possible due to the surgery and time spent in the hospital. Home is a much safer place for Jameson. Please pray that God so protects His little one, Jameson. We know and believe that He will.

We appreciate all of you.

Thank you,
Todd and Melisa

Tuesday, July 29, 2008

Miami Day 2

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

Monday, July 28, 2008


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

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 .

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.

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.

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

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

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