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.

Love,
Melisa

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

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.

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!!!!

Love,
Melisa

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 Jameson...as we know you are.

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.

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.

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.

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.

Love,
Melisa

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.

Love,
Melisa

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

He is growing!!!

I have to do bandage changes once a day everyday for Jameson....as 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.

GOD IS GOOD ALL OF THE TIME!!!!!!

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.

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.

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.

Todd

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.

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

Infection

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.

Thank

Fever

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.

Todd

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.

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