We took Madie to see her Geneticist at Primary Children’s Medical Center. His name is Alan Rope and he is awesome. He is very knowledgable and he takes so much time to get to know Madalynn and thoroghly answer any questions we have. Madie has a duplication of Chromosome 3q. More testing is needed to specifically see where her chromosomal imbalance lies. A specific disease may be identified or it may turn out that she has a rare form of a genetic disorder that has not been studied much due to its rarity or it not being documented. Mike and I may need to have our chromosomes tested as well to determine how much genetics plays a role in Madie’s unique and cute personality. When we have more results we will hopefully be able to determine what her future might bring.
Dr. Rope also found a heart murmer in Madie. Sixty percent of even “normal” children have heart murmers and don’t need any reparations. However, fifty percent of kids with a genetic disorder have some kind of heart defect. It has not been detected before in Madalynn, but I brought it up to Dr. Rope and he heard it. She is scheduled for an Ecocardiogram on August 10th at PCMC. We plan to be there all day. We would appreciate all prayers and fasting on that day…(Madie will actually have to be fasting too).
Madie also had a check-up with her Opthalmologist, Dr. Scott Larsen, last week and he is impressed with how good her eyes look. Her crossed eye is straightening out well. She does pretty well at keeping her glasses on.
Feel free to call or email us if you have any questions or anything you want to share. Madalynn is doing very well and is learning so much. We are very proud of her and happy for her.
We love you all and thank you for your continual love and support. Take care. -Mike and Carrie