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".
Love,
Melisa
Help! This dogs getting me.
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9 comments:
So glad to hear you have been home so long! Praise God! Continuing to pray you all!
Kathryn
Hey Melisa,
I was getting a little worried about you guys!
EBer's are very slow at gaining weight. When Sami was his age she only weighed 8 1/2 pounds. She only gained about a pound a month (if that sometimes)
As long as he isn't losing weight, then he is fine. Even if he hasn't gained much, that's ok, but when he constantly loses weight, then you need to worry.
I learned today that this is they way the body uses calories: First to heal, second to grow, last to gain.
When you get time, give me a call sometime. I learned something else the other day that you will need to know about since Jameson is a boy :-)
Hi Melisa,
Can you believe our baby boys are already three months old?!?! Some days, I feel like they were born yesterday...and others it seems like they've been here all along, you know?
I just wanted to let you know that Jared and I are continuing to lift up the entire Setsma family and especially perfect baby Jameson. You are such an inspiration to us as parents, a family, and as faithful servants of our Lord.
Much love,
Elizabeth Chesser
Hi Melisa. I'm glad to see that you guys are making it. I feel like I'm reliving Ella's progress through you guys. A lot of people suggested that we only change her bandages every other day, but I was so nervous and wanted to see what was going on under those bandages. When she was about 5-6 months old we started changing them every other day. We love the off nights. It gives us all a break and a chance to just hang out as a "normal" family without the bandage change lingering over our heads. (Joe and I do the bandage changes together.) You'll know when it's the right time to slow things down. I'm glad to hear that you all are in a routine. It's all just taking it one day at a time, knowing that tomorrow may be better or worse than the day before. If nothing else, this disease has taught us all to stop and smell the roses.
Katie M. mom to Ella, 15 months RDEB.
Melisa, You and Todd are both "running the race" very well. God is smiling down upon you as you faithfully love and care for his precious children. Praying HIS perfect strength for you all, comfort, peace, discernment and patience. I join with you in the belief that God WILL one day heal sweet Jameson!!
Can't wait to see you again soon. xoxox
Love you all so much. You both are such wonderful examples to all of us on how to lead a Christ-centered family. We are praying for JT constantly.
Love Mark and Tania
Melissa and Todd: we love you guys so much. We will pray especially for Jameson's food intake and that you will know, with confidence, when it is the right time to go to every other day for bandage changes. We miss seeing you guys, but keep you all in our thoughts and prayers! Christine
Dear Melisa one of the hardest things in life is to be still and wait however you and Todd are certainly great examples to all of us. We have many people in our church praying for Jameson and I truly believe God is going to honor the prayers of his people. Lean hard on the Lord and He will get you through each day.We will start praying his formula intake will increase.We are so excited to hear the hospital visits have slowed down.We serve an awesome God!
Love Glen and Debbie
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