Hello family and friends and welcome to our blog. This is all very new to me. I have been following a few blogs and feel like it is a good way to communicate and keep everyone updated with Haleigh and our life. Myself and my husband Josh live outside of Washington DC with our 20 month old daughter Haleigh. As many of you may know our life has been kinda hectic as our daughter deals with an unknown genetic disorder that is keeping her from growing and thriving as she should. She is currently 20 months old and weighs 11 pounds 6 ounces as of May. The doctors have her currently labeled as "severe failure to thrive" with unknown causes. This has kept Josh and I very busy with Doctor appointments and therapy sessions for her. Just to give you all a little background, she currently is being followed by a number of specialists. First of course, she is seeing genetics at the University of Maryland and Children's Hospital of Philadelphia. She sees a Neuro-geneticist at the Children's National Medical Center. She is also followed by Endocrinology, GI, Orthopedics, and physical therapy. She has been tested for a number of disorders, all of which came back negative. Most of her doctors are completely puzzled as to what may be causing her growth failure. She most recently has been tested for Cockayne Syndrome. We have not yet received the results for this test. We are also in the process of getting her into the National Institute of Health Rare and Undiagnosed Diseases Program. Her doctors have recommended the NIH program because they are all puzzled at this point. She doesn't walk, which they believe is more of a strength issue. Surprisingly she eats everything in sight!! Eating is her favorite past-time, and there is not a food she will turn down. She eats as much, if not more than, as a baby her same age but twice her size. I have yet to find out where she puts it all. She is a very happy and funny baby. She has a wonderful personality as well.
I hope this is a good introduction. As i remember more i will fill you all in. I hope you all have a wonderful holiday weekend! :o)
Haleigh's Journey
Josh and Amanda God does answer prayers as you know linz is in remission and all the prayers have helped .. Haleigh is beautiful !!! A great way to keep everyone. I know you wish you had your mom right now to help you guys get through this rough patch in your life but we all will be praying for Haleigh and you guys Love ya Aunt Jan
ReplyDeleteThere is hope. Like everyone says God does answer prayers. Noah has been healed of many of his issues with having Trisomy 8. We went through a year of hell but now he is doing well. I dont know why God chose to heal him. I dont know why now. I know that God loves Noah more than I do and God loves Haleigh more than you both do which is so hard to fathom. If He loves them more than us then we know He will be there with them. I will continue to pray for Haleigh and thank God for the miracle He will do in her life.
ReplyDeleteBE blessed
Ashlee
http://ourjourneytoadoption.beckfamily143.com/