Wednesday, May 14, 2008
Mosaic Triploidy Support Group
I just wanted to share with you all that I have found our very own online support group for mosaic triploidy/ DTM Diploid Triploid Mosaicism. It is amazing to see God work! There is a real special lady who helped put it all together. Her name is Julie. I check my blog and e-mail daily. It is such a source of encouragement. Anyway- I think there are about 13 families that I have contact with that have children like Caroline. I can talk to all of them about anything I need or wonder about. They are all very understanding and have great ideas! There is a family camp that I hope to go to sometime for disabled children and families put together by Joni Erickson Tada. I remember doing a book report on her in third grade. The new project is to connect the triploidy families and have a conference to where we can network and socialize and let our children see one another. We do not have any funding and we are trying to put together a way for us to meet and learn new techniques and therapies. I do believe God's hand is at work in all the ways he leads people. The other thing I do in my free time is network on Jacksonville Mommies here in Jax. It is a great way for me to meet mommies and kids and to learn my way around in a new place. Please pray that Caroline's new therapies start soon! She has been without therapy for 3 weeks. I am waiting on the Early Start program here to contact me. We will go to the orthopedist in July to check on scoliosis for Caroline and see if she will need a brace now or later.
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32 comments:
Praying for you! You are amazing! Call me sometime when you get settled :)
It is wonderful and amazing to see how God is working in your lives. I'm sure you are an inspiration to these other families, just as they are to you. It means so much to have someone who understands. We continue to pray for you, Cam, and the girls. Can't wait to see you!! We Love and Miss you lots!
I've been checking your blog daily to see when you would be back on-line. So glad you're getting settled in. Hopefully Caroline will continue to grow and flourish and Carly will adjust well. Kids are very resilient. Good luck in Jacksonville and with your new support group.
Peggy
Hi Cam and Kim,
It's always good to see an update. I check in on you, and pray for you, all the time. But, I'm sad to say I think this is the first time I have left a message.
Your entry from the other day about being in Jacksonville reminded me to send an email to a very good friend in Jacksonville. My roommate from college lives in Jacksonville, and he and his wife teach a class at First Baptist Jacksonville (downtown). He told me to pass his contact info on to you. So, please send me an email and I will forward his contact info to you. My email address is the same as when you guys lived in Dallas (at Lennox).
Jenn and I miss you guys. We'll continue praying for you!
Chuck
Yay! for Early Start!! I'm sooo thankful you are getting connected in Jacksonville! Girl, if you ever get a chance to go to JAF Family Camp, ya gotta go! They're totally awesome!! The last one we attended, Joni was there, and she did our large group devotionals every morning. Man, oh man, does she ever have a way of bringing home a point!
Kim, I just want you to know...you're doing a GREAT job! Don't ever underestimate the workload of having a mosaic baby. You're doing the equivolent of 2 jobs taking care of Caroline. Be sure you get the rest you need...it's a marathon, not a sprint!
I love you, Girl! Call me any time! Next time you see your mom, tell her I said Hi! Give Caroline and Carley a huge hug from David and me!
Love, Julie xox
I've been checking your blog frequently and I am so glad that you have a support group of families to speak with. I know for sure that God is working through you and giving you strength to do what you need to do day to day for your family. I am also very excited that Caroline will be starting her therapy again. I know it is helping her. I pray for you all daily. I love you and miss you. Mimi
Hey girl! The JAF camp is INCREDIBLE!! We are working on a special needs ministry at HG and there is a great JAF office here. We are getting to know all sorts of folks and the Lord is blessing! I know the Lord will bless you through this!
Miss you guys!
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