Sorry for the delay in updates but it has been busy around our house. Let me fill you in on what we have been up to. Last weekend Jim and Nancy were down. We had a GREAT weekend together. We love having family down to visit.
Wednesday we headed back to Texas Children's for the day. We met with Dr. Lakshmi and definitely felt more connected with her. I feel a lot better about building a relationship with her. I know time will allow it to grow and get better. Thank you for all the support and prayer in this area. We found out a lot of information and got a lot of questions answered. The labs came back and diagnosed the gene that mutated. This is good news because now James and I can be tested to see if this was passed down to him or a random mutation. We are PRAYING for a random mutation. We discussed steroid treatment with her and she still wants to begin them at 6 months. James and I really want to wait longer so this is a very GREY area. We will hopefully get some more information before the 6 months get here. I am so nervous about starting steroids and with each day that passes I know the time is coming to begin them. I really need prayer in this area. We talked a little about the bone marrow transplant in the future but that is still such a risky procedure that I know nothing will happen anytime soon.
After our appointment we headed to the transfusion/chemo area for a transfusion. His levels had dropped down into the 6s and the transfusion was a must. He was an amazing little boy and did great. It takes about 3.5 hours to complete it so we had a very long day. Our nurse Ashley was SUPER! She is 28 years old and made the day so pleasant. I am really thankful fo the great staff up there. He has placed some wonderful people there to work with all the families. Some of my new friends were there again and we got to visit more and bounce thoughts off each other, THERAPEUTIC!
Now James and I are desperate to meet with someone who is very familiar with DBA and aggressive towards treating this condition. We may be flying to New York in a week or so to meet with them. Please pray this works out and we can get some good answers. The summary of Wednesday is that I was reminded how serious James Thomas' condition is. We will be at the hospital at least once a week for the rest of his life unless we find a cure for him. I want the very very best for our sweet boy and it is frustrating that there is no way to heal him right now. Hopefully New York will bring some peace of mind to us.
James' dad and granny are here with us right now. It has been nice to have company and get out of the house a little bit. Granny, Melissa, and I are off to the Nutcracker Market this evening! Hopefully we will find some great things. I have not bought one single gift yet!
I can't believe the holidays are just around the corner. We are doing our Christmas card pictures tomorrow with Summer. This Thanksgiving and Christmas will be extra special as we celebrate it with James Thomas for the first time. We have so much to be thankful for!
Love to you all,
I will definitely be praying for your trip to New York. I hope that it proves to be a very successful trip! I'm so glad that your relationship is growing with the doctor and that James Thomas has such wonderful nurses at TCH! Hugs to all of you!
ReplyDeleteGlad to hear the long day went well. We'll be praying for God's wisdom in regard to steroid treatment.
ReplyDeleteDid you enjoy the Nutcracker Market? We have the styrofoam cup booth! I wish I had jumped over from Karen Hutcheson's blog a bit earlier and got to know you! I would have loved to hug your neck in the midst of selling sleeves of cups!!! I will be praying for your sweet prince, and for God to bring a steady and commited blood donor to his life.
ReplyDeleteGina Root