This week has been very difficult. I hate to admit this but Scarlett's SMA has progressed. We have been battling psuedomonas for the past week and now she has serratia (another nasty respiratory infection). She is experiencing the same GI issues (vomiting and severe reflux) and we don't think the GJ Tube solved her problems. We are also very worried about the overall appearance of her chest. We made an appointment with an Orthopedist and are waiting to see him. I believe that Scarlett has scoliosis and that is part of her chest deformity. I've been consulting with other SMA moms and SMA specialists over the past week. I hate SMA but I love the people I've met within the SMA community. They are the most loving, caring and supportive people I've ever met.
Speaking of caring, loving and supportive friends... My college roommate Jill sent out the sweetest, most touching email to all of her friends and family about Scarlett and Spinal Muscular Atrophy. I've had an overwhelming response from her email and I can't thank her enough. Her words were perfect and she truly captured what we are going through. It was the kind of letter that you print out and keep forever. Thank you Jill, TJ, and Luke for your help!
4 comments:
I'm so sorry this week has been difficult for your family. I hope Scarlett starts feeling better soon. I'm glad you have such wonderful family and friends that surround you. It is nice to have a good support system. I will keep your family in my thoughts and prayers!!
I am so sorry for everything that has been going on this week and how hard it is. I have found that the support of other parents of children with the same disease as my daughter are just a wealth of knowledge. Praying for Scarlett as always.
Scarlett- I hope you feel better soon sweetie. Hugs and kisses from WI. xoxoxox
Scarlett and your family are in our thoughts and prayers!!
I pray for your sweet Scarlett every night and will pray even harder now. She is such a little angel that has impacted so many lives. i don't know your family, personally, but I know that God has blessed you with a true angel. Scarlett's eyes tell a whole story in itself. I can't imagine what you are going through, but will say many prayers for God to continue to carry you through this!!
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