April 13th, 2009

What an Easter! This Easter was much different than any other Easter we can remember in our 36 years of life (I turned 36 on April 1st - Melisa is actually 37 but don't tell her I shared her little secret - let's just keep that between us).

We have written in the past about God knowing exactly how we felt when Jameson passed away and this year we felt an unbelievable closeness to our Lord as a result. It's hard to put into words really...let me put it this way. We praise God for teaching us from His mountain top and not letting us walk through the valley of death! We have feared no evil because His rod and His staff have comforted us. We say it's a mountain top experience because we have been blown away by what God has taught us, revealed to us, trusted us with, how He has comforted us, and the list goes on and on. He has taught us more about Himself in the death of our son than we could have learned in our life-time. He has made it so clear that it's because He gave up His son for us that our precious baby Jameson is in heaven today sitting in Jesus' lap. What a glorious picture of our loving God.

Giving thanks in all things is not always easy, but it's a command. When we truly praise Him in all things He reveals things to us that we would never have learned otherwise. We believe that all of you that have been prayer warriors for us the past 9 months (he would have been 9 months today) have an idea of what we're trying to convey. Your pain runs deep for sure, but God's says take heart I have overcome the world. He has overcome death and we fear no more. Hallelujah! Ask God for His wisdom and He will share it with you. He will give you the peace that passes all understanding and an understanding that can't be explained by worldly wisdom. We can't praise Him on our own. Ask Him for the Spirit of praise. Let everything that has breath praise the Lord. Don't let the rocks, that don't have breath, out praise you! God is so good!!!

Shifting gears a little bit...please pray for Melisa. She's up in Wisconsin right now spending time with Paul, Jen, Lily and Layla Nick. Layla was born on Jan. 20th with Simplex Dowling Meara, the same type of EB that Jameson had. God put it on our hearts to help others and that's exactly what we intend to do. Melisa arrived this afternoon and is having the time of her life. The Nick's are precious people. Layla's Caring Bridge page is caringbridge.org/visit/layla
I know they would cherish your prayers and encouragement in this difficult time. Take a minute and write a note if you can. We will update you more as the information of the trip unfolds.

We are going to throw a party like no other sometime in early summer. My father-in-law is going to cook an entire pig and a rotisserie. Everyone is invited. We will get you more information when we have picked a date. We just want to say thank you to all of you and shake your hand and hug your neck - so you better be there. You know who you are! May 9th was going to be the day, but it's Mother's Day weekend and our feeling is that to many people would be out of town that weekend??? What do you think?

Thank you for all your love for us. We praise God for each of you.

In Christ,
Todd

Hello

I have to say... this is my first time writing on the blog since baby Jameson went to be with Jesus. I said that I was not going to write again but the Lord pressed upon my heart to share more of our lives with you. I am not sure how we are doing. People ask all of the time, how are you and I say "Just fine". What those words mean are....I am not sure how I am. The emotions are different each day. And sometimes I have NO emotions at all. The roller coaster of peace and pain comes often. I have NEVER experienced so much peace from Jesus. And on the other hand, the pain is so overwhelming at times. The great sense of loss is tremendous!!! Jesus gained an amazing baby in heaven and I lost that same baby. I miss Jameson very much. I know that God understands my pain. He lost a Son too.... and for His loss... my son now is with His Son. That is what gets me through the pains and when I remember that... the peace comes. Thank you Jesus for knowing my every emotion and YOU are GOOD all of the time.

Our family just went on a vacation. It was the boys spring break and we went to the mountains of North Carolina. We had a great time together. We fished, hiked and canoed. It was soooo cold and the boys did not want to wear jackets. They are such Florida boys....shorts and flip flops are all they know. The time together was good and Todd and I were able to look into the boys eyes and see how they were really doing. The boys seem to be handling all this really good. Zachary wants to talk about everything. He wants to listen to the music that was played at the memorial service all of the time. And he wants to tell us what he remembers about Jameson at the hospital. Zacahry is very open and really does not want to forget his baby brother. I overheard a conversation the boys were having and Zachary said to Nicholas, "Jameson will always be our brother". Nicholas just said "I know". Nicholas is the quiet one....he doesn't really talk that much about Jameson. He will listen and say a little but not very much. His personality is to think and process his emotions internally. I sometimes get a little nervous about that but....I cannot change who he is. It is a really good thing that Nicholas and Zachary are different. Zacahary's strengths are coming out (very talkative and expressive) and I believe that this is helping Nicholas process his thoughts. Just as long as their brother is being talked about...there is comfort for all of us. I have such a fear that we will forget about Jameson and that we will stop talking about him. Zachary is the one who will NOT let us stop talking about Jameson....and that makes me happy. Nicholas and his quiet strength seems to be leading him to an amazing place....he prays differently because of our loss. Nicholas's prayers are more for others and less for self. He is growing up and maturing right infront of our eyes. The boys are becoming little men who know what it is like to suffer the loss of a baby brother and see how God can use both of their strengths to help heal our family.

I will never look at life the same. When I really think about the verse that says "ALL things work together for GOOD"....something, I veiw as painful...God turns around for GOOD. We will NEVER know on this side of heaven all of the GOOD that has been brought about by a little boy with a very bad skin disease. But I stand on the truth that ALL THINGS WORK TOGETHER FOR GOOD to those who love Him and are called according to His purpose.

I am not sure what to do about the blog...do I keep writing and keeping you guys up to date on us or what? I guess we will just know. I cannot tell you how much all of you guys have meant to us and how often God used you through this blog to encourage us. There were days when God spoke to us through your words. You guys are so loved by us and the prayers you prayed for us were ALL answered.

Love,
Melisa

March 13, 2009

What a week Melisa and I have had together. Time to cry, laugh, question, rest, and time to spend quality time together. One of our friends that we know through the kids baseball said the other day that they had never seen us together. Since Jameson couldn't leave the house only one of would be at Nicholas' game at a time. Well, this week we weren't apart and we loved and cherished every minute of it.

This week we found a wonderful plot under some big pine trees at the Winter Garden Cemetery. Melisa and I buried Jameson's earthly body this morning. We didn't think it would be so hard, but we had a good cry.

We want each of you to know that all your prayers for our family are being answered. God has given us amazing peace and understanding this week. We spoke to a wonderful psychologist named David Thomas and he was so encouraging. He really likes how we have handled this journey with Nicholas and Zachary. We have been so concerned for the boys, not wanting them to struggle now or years from now with underlying anger, pain, doubt, etc... David gave us some great exercises for the boys and we are pleased to announce they are handling the death of their brother better than we could of ever imagined. Again, God is answering your prayers for Nicholas and Zachary.

Please continue to pray for us. We have not done anything in the house with Jameson's bandages, crib, room or toys. We just want to take our time and ease into it as we are lead too. I will be heading back to work next week and I'm sure Melisa will have some harder days all alone in the house. Even now we don't like going in certain rooms and we have been avoiding those areas (bandage room!).

We told you we would get you the address for donations. It is:

Arnold Palmer Medical Center Foundation
3160 Southgate Commerce Blvd Suite 50
Orlando, FL. 32806

Please note that it's in Jameson's name so they will direct it accordingly. Their is one little RDEB boy that we would love to help.

If you feel comfortable you can make the check's out to us and will direct them to the EB families around the country that really need financial help. We know of many families that have an EB child and they either can't afford bandages at all or have such a limited supply that they have to wash them out and attempt to re-use them. We can't image!!! Please know that our hearts desire is to help as many families as we can.

We will continue to update the blog and share of the God's mercies that are new everyday.

Love,

Todd

March 4, 2009

Just wanted to give a quick update. Melisa and I are doing well. We can't wait to see you all on Friday.

A lot of people have been asking us what they can do. Melisa and I have a heart to help other babies that have the same condition that Jameson had -epidermilysis bullosa, EB . We ask that in lieu of flowers that donations be made. We don't have all the information from Winnie and Arnold Palmer Hospitals yet but I will get it up on the blog as soon as possible.

Please pray for our family specifically during the night and morning. It's so hard at bedtime and when we wake up in the morning.

Thank you all for your support.

Todd

March 3rd, 2009. Celebration Day

This morning at 6:08 Jameson went home to be with Jesus. He's now got a perfect body without EB and without breathing problems. He's running around playing with Jesus. I told Melisa that Jesus is probably rubbing his skin all over the place and no blisters!!!

The past 24 hours have been really hard, as you can imagine. At noon yesterday a MRI was done on Jameson's brain. It came back showing that severe damage had been done to all parts of his brain as a result of him coding for 17 minutes. The ER doctors kept him alive through chest compressions. I'm not a fan of CPR anymore...just kidding of course (the good of CPR far outweighs the bad). At 7:30 last night Jameson's breathing tube was taken out and the strong little guy comfortably breathed on his own for about 10 hours before he went home to receive his new, perfect body.

We thank each and everyone of you for your unfailing love and prayers for us. We know that God has answered all your prayers for Jameson. We feel a peace that passes all understanding.

Our memorial service is set for this Friday at First Baptist of Orlando's Henry Chapel at 11 a.m.

Thank you.

Todd and Melisa

Mar 1, 2009

Where do I begin.....the last 2 days have been an emotional roller coaster for Todd and me. Jameson is still on the ventilator. His swelling has gone down and now it is a balancing game of trying to keep all of his fluids normal. The doctors and nurses are really getting a full days work with our baby. He is just a little high maintenance =). Needless to say, we have really connected with all of our nurses and they have become our friends. The doctors are concerned about brain trauma and at 4 or 5 on Monday morning he will have a MRI of his brain. This will answer a lot of our questions. Someone prayed today that none of this has surprised God and that He has gone before us and has prepared us for the results. We know that fear does not come from Him....so please pray that we will not be fearful of the results of the MRI. God WILL only give us His best and there is a comfort in knowing this is God's will for our lives.

I was once asked a very hard question....and the question was this. If God did not do one more thing for me or if He did not answer one more prayer...Has God done enough? I was torn. But ultimately my answer was yes. God does NOT need to answer one more prayer or do one more thing for me....He has done it ALL when He gave me His only Son.....Jesus Christ!!! That was enough.

Thanks for your prayers.

Love,
Melisa

Feb 26, 2009

Today was much like yesterday...not much change. It is a time for Todd and I to be still and know that God is God and His timing is perfect. Jameson is no farther along than yesterday. A very insightful doctor told me today, "Melisa, he is NOT getting worse". So instead of thinking that he is not getting better...my new way of thinking is this...we are not getting worse. We are just waiting for Jameson to let us know what we can do next to help him. I found myself thinking today that this really stinks and it is not fair and so on and so forth. I was quickly reminded that when I am thankful it is hard to be negative. So, I decided to think about what was positive and I came up with far more reasons to be joyful than to be unhappy and negative. Yes, this is hard and there are times when it has been unbearable, but we have not lost hope. We serve a BIG God with BIG plans for our baby boy. I WILL accept this trial and praise God that He has given Todd and our family EVERYTHING we need to go through it.

Thanks for ALL of your prayers.

Love,
Melisa

Feb 25,2009

Sorry to say the same...we have not improved. Jameson is still stable yet critical. I am not so sure of what else to say. I just know that ...when I pray I want to be anxious for nothing, prayerful for everything, and thankful for anything. (Phil 4:6)

Jameson has been in pain and that is so very painful to a mommy's heart. Please pray that Jameson will not be in pain!!!

Thank you for praying with us.

Love,
Melisa

Feb 24,2009

Today was much like yesterday. Not much has changed with our baby boy. He is still stable and still on the ventilator. The doctors took Jameson off the paralyzing drug and he has tolerated it very well. The next step will be to gradually take him off the ventilator. This may take days but this is top priority to help with Jameson's recovery. The longer he is on the ventilator the more complications arise. They did another x-ray on his chest and there were no improvements today. But since we have been in the hospital his chest x-ray have improved alot. We are amazed with the high level of care that they are giving our baby. The nurses and doctors are supportive and encouraging us to not give up hope. The doctors are always 10 steps ahead of us and are prepared for each hurdle we have faced. I thank Jesus for such an amazing group of doctors and nurses who want only the best for our baby. Jameson is not conscious nor has he opened his eyes for days...I can only believe that Jesus is being his comforter and He is singing sweet lullabies to Him. When Todd and I cannot be mommy and daddy to Baby Jameson; Jesus is Jameson's all and all. "In our weaknesses, He is strong!"

Thank you for all of your prayers...God is faithful.

Love,
Melisa

Feb. 23,2009

God's grace was sufficient for today!!! Jameson is the same and it is just a waiting game. We are waiting for him to let us know when he is ready to move onto the next step. The last 3 times that they have tried to take him off the paralyzing medication; he did not handle it well at all. The Doctors are saying that he will let us know when we need to lower the ventilator and all of the medications.

Jameson is such a strong little boy and he is such a fighter. I stand amazed at all of the things he has to overcome. But we serve a God that has overcome this world and He has the victory. Jameson will have the victory as well. And all of us will see again what an AWESOME God we serve.

Love,
Melisa

Sunday Feb 22

Just wanted to give you all a quick update before we called it a night.

Jameson was about the same today. He is still on the ventilator and they have not been able to reduce the help it's giving. Actually they had to increase it's help yesterday and today. He is still in what I call a "drug induced coma-like state" (not sure what the doctors would actually call it). He hasn't opened his eyes since Thursday. They do this so his body will rest. He is still very swollen from the drugs and fluids and it may take up to a week to for his body to return to it's normal size. The doctors hinted today that we will most likely be in the hospital for at least another week if not more. Tests showed today that he does have MRSA and they are treating that with antibiotics through his central line. We are waiting to see if it's blood born or just topical. He is still in critical condition!

One of the hardest things about this is not being able to hold him. Since he has so many machines hooked up to him we are not able to move him at all for obvious reasons. It's so sad to see him just laying there motionless.

Please pray that as the doctors slowly reduce Jameson's dependence on the ventilator and drugs that he will respond positively and not go into shock which causes his heart rate to sky rocket and his breathing to rapidly increase. His body needs to be strong enough to handle the reduction and at this point it's not.

Thank you.

Jameson is in Arnold Palmer hospital today. He was admitted on Wed. night. He is in the pediatric ICU. Jameson is very sick and we ask for your prayers as our baby is fighting for his life. He is on a ventilator and has had a blood transfusion. It all started with his breathing and has now come down to a machine helping him breathe. He was without oxygen for some time and the doctors are concerned about brain function.

Please pray:
*God's BEST for Jameson and God's will
*The peace that passes ALL understanding for our entire family
*Thank Jesus for the people who have taken such GREAT care of our boys as we have been at the hospital
*Thank Jesus that He has not left us
*and that in these hard times we become stronger in our faith..loving Jesus more and more even if we do not understand what He is doing.

Please pray

Hi guys. Please pray specifically for Jameson's breathing. He continues to fight for breath at times and we are giving him more breathing treatments than recommended. The Dr.'s say one every four hours and there are times that we have to give two or three in a four hour time period.

Also, please pray for his skin. This past week his skin was really bad. We're aren't sure why exactly but think it may be a result of the steroids.

It's still a wild roller coaster ride of ups and downs...we rest easy though because we know Who is in control of it all.

Thank you.

Answer to Prayer

Praise God from whom all blessing flow. Baby Jameson's skin is showing signs of improvement. It still blisters and we have a long way to go, but Melisa and I both agree and can see that God is answering your prayers and ours.

We are leaving Jameson's gloves off much more now and he loves to gently touch things. He even held a baby rattle yesterday. He's starting to reach for things on his own and he's so alert. His body doesn't move much...his eyes are a different story. They are going a mile a minute. He is taking it all in all the time.

Please pray specifically for his hands, feet and his breathing. His hands and feet blister the most and it seems at times like they are never going to get better. As for his breathing, we were admitted into Arnold Palmer Hospital again last week. He still has his bronchilitis.

Thank you for your friendship.

Todd

Gaining weight

Jameson has gained 12 oz. in 3 weeks. We are very encouraged by this weight gain. He is not crazy about eating, but he continues to amaze us when he eats 1 or 2 extra oz. Really that is all we need...a couple of extra oz. a day. We just need Jameson to increase his intake. We are definitely taking baby steps, but we will take anything we can. Jameson should be taking in about 30 to 32 oz. a day and he will eat on a good day 24 to 26 oz. Please continue to pray for Jameson to increase his caloric intake and also enjoy eating cereal.

Jameson is a very happy baby. He smiles and sits up(with assistance). Nicholas and Zachary love him bunches. Jameson will open his mouth to kiss the boys all of the time. They will walk past Jameson and he will open his mouth for them to give him a kiss. His eyes light up when he sees his brothers....there is nothing like a smile and kiss from Jameson.

I am truly learning to be content in all circumstances. Contentment is knowing that everything that life brings my way come through the hands of the Almighty God. I know that when Jameson has a day when his breathing is bad...God knows and His hand has allowed it. I know that when there are more blisters than good skin....God knows and His hand has allowed it. NOT one thing that happens goes unseen by a Mighty God. What a confidence I can have going through life with a child with a skin disease...God knows and His hand has allowed it.

We love you all! Please continue to pray for NO MORE BLISTERS and Jameson's growth. Thank you Jesus for all of those who pray for us. We WILL give you the glory for GREAT things You have done!

Love,
Melisa

911 SCARE

Oh my what an action packed last couple of days. On Tuesday night, we had to call 911. Jameson has had some upper respiratory problems within the last 4 or 5 weeks. Todd and I have been dressed and ready to go, 3 times in the past month, to take Jameson to the hospital. Jameson's breathing would get better and we would thank Jesus because we did not have to go to the hospital. Well...on Tuesday his breathing never got better only worse. He was really struggling to breath. My parents had left and Todd and I had no other choice but to call 911. I stayed home with the boys and Todd went to the hospital with Jameson. Jameson received a breathing treatment for 2 hours and a steroid before he had any relief. Jameson was admitted and stayed overnight. We were released around 5 o'clock Wednesday afternoon. We were very thankful that Jameson recovered so quickly and that we had AMAZING doctors. We are always encouraged going into the hospital....God shows us that He always goes before us. Our worries are great but our GOD is GREATER!!


We have told you guys about our concerns with Jameson's eating. We now are working with a nutritionist. She is wonderful. Her commitment to helping us and Jameson is just another way God is showing us that He so in control of our situation. We pray that Jameson will grow and we will avoid a feeding tube. Our worries are great but our GOD is GREATER!!!!

Just an update about our friends. Gracyn is now alert and awaiting a new heart. She did not have a virus that attacked her heart. She was born with a genetically bad heart. The doctors said that this condition typically takes children before the age of 5 years old. Gracyn is 9 and has had no complications until now. Please pray for the family that will loose their child to give Graycn a heart. Also, pray that she will continue to improve and be healthy when a heart comes available.

We love you all!
Melisa