Jameson had an okay day. He is eating very well and that is an answer to prayer. We are feeling a little more confident with his condition. We are now doing a lot of his dressing changes (which takes about 2 hours a day). He is such a strong little boy already.
We received good information about the biopsy...he does not have the worst level of EB. The other results were inconclusive due to the fragile skin. We are now waiting for Dr. Knipe, Jameson's dermatologist, to talk to two EB specialists to see which direction we should go. We will either be going to Cincinatti to see Dr. Anne Loucky or we will be going to Miami to see Dr. Elizabeth Connelly. Please pray that God will make it so clear on which doctor we need to take Jameson to see.
Thank you for all your prayers. We can definitely feel God working all things for His Glory. It's awesome to be a part of His plan.
Todd and Melisa
Help! This dogs getting me.
13 comments:
Hello Setsma's! :)
Dianne told us about your blog and Christopher and I are thankful for the internet so that y'all are able to share your experience with all of us. :) It definitely helps us to pray more specifically and also to be encouraged by his progress. What an answer to prayer that little Jameson doesn't have the most severe form of EB!!!! I know that has to be such a relief. Please know that y'all are being prayed for and loved and that I keep looking to see what the new news is.
Love,
Tara Jane and Christopher Snead
PRAISE THE LORD for some encouraging news. Thanks for sharing with us. Will continue to pray for wisdom and God's direction.
Love,
Dianne
Praise God!! I am so encouraged this morning reading the new update and the finding the results of his biopsy!! God has already answered soooo many prayers!!
Nicholas and Zachary are really enjoying themselves. They are a true joy- you've done an amazing job with them!! It has been so touching to hear their prayers for you and Jameson.... We love you guys!!! Talk with you soon. Love you- Tania
What wonderful news! We are holding all of you up in prayer all the time. We're grateful for the pictures and the postings so we can feel more a part of your journey.
We rejoice with you in this beautiful baby God has given you. I can't think of a couple more able to take on the task of caring for and nuturing little Jameson. I know you have been and will be blessed in amazing ways.
Sending our love and lots of prayers,
Uncle Dave & Aunt Lynn
Hello Setsma Family -
I was directed here from another site and wanted you to know that I am praying for your family. I also wanted to inform you that there will soon be a clinical trial at the University of Minnesota for some forms of EB and they have initially had some very good results. Here is the link with the information. http://www.med.umn.edu/news/eb060308/home.html I hope you or your doctors will find this helpful. May God bless your search for a doctor and may He provide your family strength as you go through this journey.
Great news! We are so happy to hear the results of the biopsy. Wish we could be there to help and hug and meet our new nephew.
Lots of love coming from Colorado,
Kent and Mo
I received your blog through a friend. I cried as I read your blog because this is exactly what our blog read 13 months ago! We had our first baby on June 21, 2007 and she was born with EB as well. This was a complete shock to us and I know all the emotions you are going through. I can tell you that this year, June 21, 2008 we had a huge 1 year birthday party for our sweet Ella and deemed it a celebration of her life! Her first several weeks of life were filled with fear, anger and confusion. But God has shown us that He is still in the miracle business. A friend deemed John 10:10 as Ella's life verse, and I can say that God has truely given her "life to the full." Today she is a happy, healthy (minus the fragile skin) and active 1 year old. As a mom who has been there, I know there are a lot of things going through your head. If you ever have any questions about the first year of life with a kid with EB, if you want to hear our story, if you want advice, if you want resources to go to for help, of if you just want to talk to someone who has been there, please feel free to email me. KatieGAlex@yahoo.com. If there are other family members or friends who would like to email me, I welcome those too. My family and I are praying for little Jamison. The comfort I always had was knowing that Ella shared God's love with more people before her 1 month birthday than I had in 30 years! He is doing the same with Jamison.
Katie
I would also like to add that we have taken Ella to Cincinnati to see Dr. Lucky and she is fabulous! I highly recommend her and the rest of the team there.
Katie
That is great news. We are praying for you all.
Hey guys. We just discovered your blog, but you have not been far from our hearts and minds since Todd called. We love you so, so much...we are eager to meet little Jameson. He looks beautiful. We so wish we could be there with you and for you...but we know you have lots of support. Hopefully, we can talk soon. Your family is precious to us - Much love from the whole Williams clan
Hi Setsma's
I am a friend of your cousin Hilda Hutto and I just wanted you to know that I am praying for Jameson. I will be keeping updated.
Linda Cannon
Dear Setsma's
We are so glad to hear about the encouraging news about JT. From all the comments here, we are heartened by the strong, warm support system you have. Stay positive and know that you are in our thoughts and prayers!
Pat and Linda Loftus
Hello Setsma Family -
It sounds to me like they didn't know how to do the biopsy. That happended to my son that was also born at Winnie Palmer with EB. At least they know how to recognize the signs and immediately he was diagnosed with EB at birth. But when the dermatologist (Dr. Matthew Knight)took 3 skin samples for a biopsy to confirm the diagnsis, in all cases it was taken incorrectly. It must be done in a specific way in order to find our the level where the blisters form and diagnose the proper subtype of EB.
Instructions are provided in this web page http://www.ebnurse.org/diagnosis/biopsyinstruct.html but unfortunately, most doctors are just not informed.
In our case, when my son was 7 days old, we had him transported to Miami and a new biopsy was taken there. (My son and I were flown to Miami by an Ambulance jet from Shands Children Hospital in Gainsville. The Hospital arranged everything.) Once we were in Miami, we got concludive test results in only 4 days. My son is almost 2 years old and we still go to Miami to see Dr Connelly. Believe me, the trip is worth it. I would recommend taking your child to a dermatologist that really has experience treating patients with EB. At Winnie Palmer they claim they have experience because a few babies have been born there with this condition. But how many have they really treated successfully? Ask the dermatologist if he currently has any EB patient that he continues to treat at his private office after they leave the hospital. Just think about it. If they knew what they were doing, they would not have needed to call Cincinatti. Don't get me wrong, I'm glad they called, but that is your indication that they are over their head.
Take care of your little one,
Carmen Figaroa
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