Dear Friends and Family:
First of all we want to thank everyone that has been praying and fasting for Kasandra, Nash, and our family. We know that the sacrifices will be accepted and the prayers will be answered. We have felt so much love and support over the last couple weeks and we can’t even describe how it has helped relieve the burdens we have felt in many different ways.
We met with the pediatric cardiologist today and received some answers that we wanted to pass along. Obviously we won’t know anything for sure until the baby is born, but they believe that the tumors in the baby’s heart are called cardiac rhabdomyomas which are non-cancerous tumors. He has six of them, but typically they will eventually shrink and disappear on their own. Two of the tumors are a little worrisome based on their location, so he will receive an echocardiogram in the hospital along with and MRI to check for tumors in his brain and other areas. As long as the tumors shrink before they get too big to cause a problem then he won’t need surgery. At this point they expect to monitor him in the hospital for 5-7 days, but beyond that we should be able to take home a healthy baby. Very good news!!
There is an underlying condition called Tuberous Sclerosis Complex that typically causes the rhabdomyomas. If Nash has this condition it can cause a very wide range of issues or it could cause nothing more than the original tumors. On a very positive note, we believe through this that we finally have answers we have been looking for regarding our 12 year old daughter, Jensynn. Jensynn was diagnosed about 6 years ago with epilepsy and specifically Benign Rolandic Seizure Disorder and she has a severe learning disability. The doctors said that typically that disorder and learning disability do not go together so there are still a lot of questions regarding her diagnosis and how to treat her. A couple of the symptoms of Tuberous Sclerosis Complex are seizures and intellectual disabilities and a few other things which fit Jensynn’s situation perfectly. At the beginning of March Jensynn will see her neurologist and begin the testing to see if she indeed does have TSC. We can then take all the necessary steps to help her in any way possible.
While we are concerned with Nash and his future we are relieved to hopefully be finding some answers for Jensynn about which we have been looking and praying for a long time. We have turned our faith and prayers to the direction that Nash will not be burdened by the symptoms of TSC and that we can make progress in helping Jensynn achieve her full potential with this new information.
Again, thank you for all that has been done for and in behalf of our family. We know that we have been blessed in numerous ways as a result of these efforts. This has been a lesson for us that our prayers are answered, but not always in the time or circumstances we want or expect.
This was a letter Scott, my brother in law wrote and I thought it was a perfect way too let everyone know how the family is doing.
Okay, I just got this letter a few days ago. Calvin had to write a letter to the new president for a school assignment. When he came to Devin and I and was complaining saying he didn't know what too write. We kinda blew him off. gave him some little examples. I fell bad now but well he did such an amazing job and it brought tears too my eyes.
