Bethlehem, Georgia
Four years ago I gave birth to twins Daniel and Charlie. Charlie was born with bladder exstrophy/epispadias. This is a condition where his bladder was on the outside with a lot of other complications to go with it. My husband and I were so scared. I had the boys out of town while I was on a business trip in a small town in Tennessee.
Unfortunately, they had never seen this condition and proceeded to tell me that we would have to possibly change the sex of our baby. Fortunately, we got the boys back to Atlanta where a specialist there told us not to worry, that we were parents of definitely two boys. But he did say that Charlie had a very hard road ahead of him.
At this point I guess you're wondering about the mds. I've first told you about Charlie so that you can understand that we were already having such a hard time with dealing about the problems with Charlie. Then, because of his problem, they did a genetic study of Charlie and found that he also had mds. The doctors decided then to go ahead with a study of Daniel. They found that he also had mds. They both were diagnosed with a 25% mosaicism. It was such an awful time. I can remember sitting in the shower just crying wondering what in the world I was going to do. I loved them from the minute they were born and still loved them knowing all the problems they had, but I was scared to death. I have such a wonderful family. When my mother and father found out they showed up at my door and said we just want you to know that you're not alone and you're going to be able to get through this because we all will help. I have 6 brothers and sisters and one by one they all were at the house. Every one of them said o.k. what's our next step. With their help, and by the grace of God, we got through that first year. Charlie had 3 surgeries that year and Daniel was definitely delayed. When they were 14 months old, the boys had more testing done at the genetics department (it was about the fourth time), and it was found that Charlie's mds had disappeared. To this day I do not quite understand how. I just got so tired of all the tests I never went back.
You could soon tell though that Charlie was definitely ahead. Daniel was receiving therapy at a doctor's office three times a week without much change, while Charlie was progressing quite well. Soon our insurance ran out for therapy and I just didn't know what I was going to do. We did not qualify for any programs because of income. It was like we were caught right in the middle. We made too much money, yet we did not make enough to pay a $450-a-week therapy bill. I just turned it over to God. I said to him, look, you've got to send me some help or poor Daniel is just going to fall through the cracks! A couple weeks later, I ran into a friend that told me about a school called Challenged Child. It is a non-profit school for kids ages birth through five with disabilities and delays. What a God-send! I enrolled Daniel and within two months they had him walking and talking. Charlie was able to attend with him in the a "friend" program. They went two days a week for four hours and just blossomed. They told me when I enrolled him that they didn't work miracles, they just wanted to give these kids a chance to be the best that they could be. The best advice I learned from the school to give to other parents was to start working with these kids as soon as possible!
well I know this has been a long story. and it's not even half of it! Charlie has had ten surgeries but he is doing great, and Daniel (who we have nicknamed "Daniel do" because he just keeps on working at life!) is doing wonderful!! I enrolled both this year in a private pre-K program. Daniel is in the midst of typical kids doing well. I decided not to tell the school that Daniel was diagnosed with mds because he is doing so well and I was fearful that they would not give him a chance. He is still delayed with his speech, but all other skills are right up there with other children his age. I did tell the school that he has had some developmental delays and to let me know if he seems to not be catching up. So far they say he fits in just fine.
It's been a crazy four years. but in the end if I could go back and choose whether or not to go through it again. I WOULD. I would not trade anything in the world for my boys. They have brought so much joy to my life. If the boys and I can do and make it through all we've been through, we can do anything! These guys are definitely here for a reason! Take care, Jennie
UPDATE: Saturday March 6, 2010 I submitted my story back in 2000. I thought I would take a moment to give an update on Daniel!
I enrolled Daniel in a private school in K4. I asked the school to give Daniel a chance because the school did not have special ed. We agreed that if he could not keep up I would pull him out. He is now 14 in eighth grade and is doing wonderful! He only missed making honor roll by two points this last quarter! He does not have tutors and definitely "owns" his grades! He plays the guitar and will be in a Christian band starting this spring!
Now this did not happen overnight! I really had to work with Daniel in the early years. Bless his heart, he would get so tired and frustrated trying to learn. Some days he just wanted to give up. I just would not let him. "I Can't" became as bad as a "cuss" word in our home! LOL It was also hard because friends and family would tell me that I was being too tough on him. They would all tell me that I was expecting too much and actually get mad a me. I cannot tell you how many times I went to bed wondering that very thing. What if I was expecting too much? Every time I started to have doubts, Daniel would come home with a good grade on a test, so excited, and I would know I was headed in the right direction with him. I am so proud of him. Sometimes Daniel will come to me and say, "Thanks Mom for never giving up on me". Those are the best words I will ever hear!
Now Daniel does still have one issue he is dealing with. He still has a hard time with expressive language. I am in the process of trying to find someone that can help us with this.
It has not always been easy, but I would not trade Daniel Faust for anything! What a blessing!!
By the way, Daniel has a twin brother. This was not a choice on the drop down list!
At this point I guess you're wondering about the mds. I've first told you about Charlie so that you can understand that we were already having such a hard time with dealing about the problems with Charlie. Then, because of his problem, they did a genetic study of Charlie and found that he also had mds. The doctors decided then to go ahead with a study of Daniel. They found that he also had mds. They both were diagnosed with a 25% mosaicism. It was such an awful time. I can remember sitting in the shower just crying wondering what in the world I was going to do. I loved them from the minute they were born and still loved them knowing all the problems they had, but I was scared to death. I have such a wonderful family. When my mother and father found out they showed up at my door and said we just want you to know that you're not alone and you're going to be able to get through this because we all will help. I have 6 brothers and sisters and one by one they all were at the house. Every one of them said o.k. what's our next step. With their help, and by the grace of God, we got through that first year. Charlie had 3 surgeries that year and Daniel was definitely delayed. When they were 14 months old, the boys had more testing done at the genetics department (it was about the fourth time), and it was found that Charlie's mds had disappeared. To this day I do not quite understand how. I just got so tired of all the tests I never went back.
You could soon tell though that Charlie was definitely ahead. Daniel was receiving therapy at a doctor's office three times a week without much change, while Charlie was progressing quite well. Soon our insurance ran out for therapy and I just didn't know what I was going to do. We did not qualify for any programs because of income. It was like we were caught right in the middle. We made too much money, yet we did not make enough to pay a $450-a-week therapy bill. I just turned it over to God. I said to him, look, you've got to send me some help or poor Daniel is just going to fall through the cracks! A couple weeks later, I ran into a friend that told me about a school called Challenged Child. It is a non-profit school for kids ages birth through five with disabilities and delays. What a God-send! I enrolled Daniel and within two months they had him walking and talking. Charlie was able to attend with him in the a "friend" program. They went two days a week for four hours and just blossomed. They told me when I enrolled him that they didn't work miracles, they just wanted to give these kids a chance to be the best that they could be. The best advice I learned from the school to give to other parents was to start working with these kids as soon as possible!
well I know this has been a long story. and it's not even half of it! Charlie has had ten surgeries but he is doing great, and Daniel (who we have nicknamed "Daniel do" because he just keeps on working at life!) is doing wonderful!! I enrolled both this year in a private pre-K program. Daniel is in the midst of typical kids doing well. I decided not to tell the school that Daniel was diagnosed with mds because he is doing so well and I was fearful that they would not give him a chance. He is still delayed with his speech, but all other skills are right up there with other children his age. I did tell the school that he has had some developmental delays and to let me know if he seems to not be catching up. So far they say he fits in just fine.
It's been a crazy four years. but in the end if I could go back and choose whether or not to go through it again. I WOULD. I would not trade anything in the world for my boys. They have brought so much joy to my life. If the boys and I can do and make it through all we've been through, we can do anything! These guys are definitely here for a reason! Take care, Jennie
UPDATE: Saturday March 6, 2010 I submitted my story back in 2000. I thought I would take a moment to give an update on Daniel!
I enrolled Daniel in a private school in K4. I asked the school to give Daniel a chance because the school did not have special ed. We agreed that if he could not keep up I would pull him out. He is now 14 in eighth grade and is doing wonderful! He only missed making honor roll by two points this last quarter! He does not have tutors and definitely "owns" his grades! He plays the guitar and will be in a Christian band starting this spring!
Now this did not happen overnight! I really had to work with Daniel in the early years. Bless his heart, he would get so tired and frustrated trying to learn. Some days he just wanted to give up. I just would not let him. "I Can't" became as bad as a "cuss" word in our home! LOL It was also hard because friends and family would tell me that I was being too tough on him. They would all tell me that I was expecting too much and actually get mad a me. I cannot tell you how many times I went to bed wondering that very thing. What if I was expecting too much? Every time I started to have doubts, Daniel would come home with a good grade on a test, so excited, and I would know I was headed in the right direction with him. I am so proud of him. Sometimes Daniel will come to me and say, "Thanks Mom for never giving up on me". Those are the best words I will ever hear!
Now Daniel does still have one issue he is dealing with. He still has a hard time with expressive language. I am in the process of trying to find someone that can help us with this.
It has not always been easy, but I would not trade Daniel Faust for anything! What a blessing!!
By the way, Daniel has a twin brother. This was not a choice on the drop down list!
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