...............I received the call yesterday from the dermatologist, the biopsy was positive for Juvenile Xanthogranuloma.............does NOT show whether or not for sure that he has NF, I misunderstood that as I thought the biopsy was to confirm the NF. The geneticist will confirm the NF.........the dermatologist told me he felt sure that he would have NF. But his main reason for having the biopsy done, is that kids with JXGs (these spots go away over time--no other effects from these spots)----and NF have a slightly higher chance of developing leukemia.......he didn't want to tell me that earlier as he was giving me so much other news..................he said the it increases the chances by about 20%, HOWEVER, the strand of leukemia is a RARE form.......so the chances of Brady getting it, are slim but he wants everyone on the same page in order for all the drs to keep an eye out for any symptoms.
We have to take it one day at a time!!!!
About Me
- Stephanie Craycraft
- I am a very blessed wife and mother....to a wonderful (and patient) husband and to a "lively" set of twin boys and their younger brother
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Addl Pix from The Great Pumpkin
My sweet Brady
PaPaw and Hayden
MaMa T and Cecilia
MeMe and Brady
My Boys
Alabama Heat!!!!
2 comments:
Hi Steph,
We are thinking of you all as you await your diagnosis for Brady. Know that we are praying that the Lord will lift you up and give you many unexpected blessings in the midst of this difficult time. Love to you and all your precious boys! Lori
Stephanie,
I also grew up in Marion! I chatted with Julee on facebook recently and she shared with me the challenges of your family. I have thought alot about what to say to you! I know the challenges you are facing! My little girl Finley suffered a neonatal stroke sometime around the time she was born. At 3 days old she began having seizures which was a blessing! It allowed us to know she had an issue because otherwise all seemed perfect! She has a golf ball sized hole in her left parietal lobe! She is now 3.5 years old and amazing! The doctors at the Children's Hosp in Norfolk, va (we live in VA) told us they did not know if she would live, walk, or talk......wow what news! But with a lot of hard work and God she is an amazing little girl! Yes there have been challenges OT, PT, speech therapy, insurance company battles, and struggles with her father (whom still does not believe anything is wrong) but God is amazing! Recently, her neurologist looked at me and said there is no medical reason for her doing so well! He shook my hand and said how amazed he is! Honestly, so am I and as I share with you I know that God has given me the strength each day for the challenges. Before Finley I believed and worshiped God but I had never felt his help in life! But I know he has a plan for Finley and he has taken care of her! He also has a plan for your family!
I spoke with my parents about your family and they knew exactly! I think I was too young! My dad coached football at MMI !
I hope I have shared with you information to give you inspiration to fight for your child! Every day is a blessing and a fight to do what is best!
Kristen Hooker Tidwell
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