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.

Love,
Melisa`

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.

Love,
Melisa

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.

Smiles

Jameson smiled for the first time!!!! What a beautiful sight that was to see. He has such an amazing smile. I will try to catch his smile with a picture. I know that every parent thinks their child has the most beautiful smile well.....Jameson's HAS the most beautiful smile ever!!!!! His smile brings such a happiness to my heart like nothing else. Jesus knows how to pick me up and keep me going.

I am not sure if I have shared with you the condition of Jameson's hand and feet. I think that I asked you to pray for his movement and range of motion. Well, he has a condition called hyper-keritonosis (spelling not sure). This causes thick callouses on the palms of his hands and bottoms of his feet. This is one of the major problems with EB Simplex Dowling-Meara. Also, Jameson has the thickest finger and toe nails. They almost look like black caps on the tips of every nail. I tell you all of this because they have started to fall off and he has cute pink little fingers and toes. The skin does continue to blister around his fingers and toes, but just for a day his little toes and fingers look "normal". I have told some of my friends what a sense of humor God would have if He choose to make Jameson into a hand and foot model =). We were told that Jameson may have nerve damage to the tips of his fingers and toes. We feel that Jesus is showing his healing on Jameson by allowing those black tips to just fall off. We are very encouraged to see All that is taking place on Jameson's little body. Please continue to pray for no more blisters and complete healing. Right now he is getting a lot of new blisters on his back and stomach.

I know that in life we will encounter many things. I know that we are promised trails and pain....I also know that we are promised forgiveness, grace, mercy, and an everlasting love of the Father. I hold on to His promises daily, they get me through whatever this life has for me.

Love,
Melisa

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. So...off 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 us....it means so much knowing that you are praying for Jameson and our family!!!! We love you all.

Love,
Melisa

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.

Todd

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!!!!!

Love,
Melisa

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!)

Love,
Melisa

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

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.

Love,
Melisa