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
Help! This dogs getting me.
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11 comments:
Wow, so glad you finally have a complete diagnosis and so much to look forward to. You are doing a wonderful job with your sweet boy! I will pray that the murmur is nothing and that Jameson keeps feeling and healing well. God bless, Tracy
Melisa,
You probably already have one, but Sami has seen a cardioligst before her spinal surgery and it was Dr. Scott Appleton. They were wonderful with her and willing to work with us EB wise. I highly recommend them!!
Finally someone else in Orlando with Simplex besides Sami and I! I am very happy that those were the results and you know what the future will hold now. I know its hard now but It will get easier I promise.
PRAISE THE LORD. This is wonderful news. We have been praying with you for this result.
It was good to hear from your Dad yesterday about this. I could hear the excitement in his voice. I do pray this heart murmur will be nothing but a noise. It sounds like you and Todd are doing a wonderful job with him. Most of all you are trusting the Lord for his healing. How blessed Jameson is to have you two as parents. Will continue to pray daily for all your needs physical and emotional. We love you all.
Dianne and family.
Melisa and Todd,
Your entire family continues to be in our prayers daily, We are so glad that you finally have something to go on!! Your faith and trust in God is amazing!!! He could have not placed Jameson with better parents..God knows what He is doing. I also know that our prayers for Jameson will be answered, in His time!!
--All our Love
The Slusser's
Praise God! I pray faithfully and also the preschool staff at the church. God is the great healer and went I believe He does do healing and miracles.
You have become so transparent in your walk with the Lord and I am encouraged when I read your words.
Blessing to you and continued answered prayers!!
Cathy Walton (friend of Phil and Cheryl)
Great news! What an answer to prayer!We will continue to keep you in our prayers. Tell the boys that we want to take them out again sometime very soon! Melinda
Praise God, to HIM be the Glory! Our prayers are being answered...I sit with Cheryl in church and have been praying for you all. Love & Prayers, Tricia Wilson
Dear Melisa we are so excited that you and Todd now know the diagnosis that you have waited for so long. This week in one of my devotions it talked about God rewards us by answering "no" to our prayers so He can say "yes" to a far grander request.Then it said step back and watch as God surprises you with the spectacular creativity of HIS INFINITE WISDOM and HIS PERFECT PLAN. God has wonderful things for Jameson we truly believe that. Our prayers go before the new heart specialist that God will give him wisdom from on high. Thank you for always sharing everything good and bad so we can all know how to pray for each situation.
Love Glen and Debbie
Todd/Melisa:
I just found out about this site and thanks so much for doing this to keep us updated. We think of you so often and continue to pray for God's blessings on all of you. So glad to hear of the good news and our prayers for continued healing. Your faith is incredible and an inspiration to us all.
God Bless all of you,
Jeff, Amy & Lily Mock
Todd/Melissa - I haven't talked with you in a few days so I thought I would write. I am so excited to hear the good news re:JT. I'm sure the Lord is just beginning to show us all His power of prayer in this trek with Jamison. You are both wonderful, caring and faithful parents and although this experience is tiring and unbelievably emotional, as you look back, it may become the most blessed and meaningful time in your life.
Keep doing what you're doing and we'll all keep supporting you as much as we all can with prayer and whatever else you may need.
DAD
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