I have two beautiful children and to look at them and interact with them you would think they were like every other happy healthy child their age. Unfortunately they both have very special medical problems. Emma was diagnosed as an infant with a Combined Hamartoma of the Retina and Retinal Pigment Epithelium on her left eye. This rare diagnosis basically means that she has a mole-like tumor on her retina. It blurs her vision, affects her depth perception and causes her eye to wander. They can't tell me what caused it and there is currently no way to correct it. She had surgery when she was about a year old to help tighten the eye muscle and straighten out the eye. She can now keep her eye straight most of the time. It seems to still wander when she looks far away or when she is tired, but usually most people don't even notice it. The doctors think that if they try to remove the tumor it would damage the vision that she does seem to have in that eye. She had a check up last week at the Ophthalmologist and he had nothing new to report. At this point NO NEWS is GOOD NEWS! The tumor has not grown and does not seem to be affecting her vision any more than before. They think that she may actually have some good peripheral vision but cannot tell for sure. We will just keep having her monitored by her pediatrician and her Ophthalmologist, who is supposed to be one of the best in the area. Having this diagnosis has not slowed Emma down one bit. She has the strongest personality of any 4 year old I know. She is confident, intelligent and absolutely beautiful.
My sweet baby boy Matthew suffered a Grade IV intracranial brain hemorrhage at 5 weeks of age. He suffered from a Vitamin K deficiency that caused his blood to not be able to clot correctly which then led to blood gathering in the ventricles in his brain. After 6 weeks in the hospital he was able to come back home. The prognosis was vague and unclear. They were not sure what problems he would have or if there would be any developmental delays. He was quickly enrolled in several different therapies in order to help give him the best chances to learn to talk, walk and function as he needed. The first sessions were discouraging as they told us that our 3 month old was showing the characteristics of a newborn. But with lots of prayers and hard work Matthew quickly starting showing progress and began graduating from his therapy sessions. Today he had an evaluation to see if he needed to return to therapy and I am tearfully glad to report that he passed with flying colors! The therapist was impressed that Matthew could recognize all his letters and stated that he also has great cognitive skills. His motor, communication, and social skills are at par with other 2 year olds and in some areas he is even ahead of the curve.
I thank God every day for my children and for every moment I get to spend with them and with my loving husband. I am happy to have this great news that I can write down so that I never forget how I’ve been blessed. In the coming week we have more doctor appointments and more hurdles to cross and I pray that I have more good news to report. But I must remember that even if the doctors and specialists tell me something I don't want to hear, I have no reason to be unhappy. The simple fact that we have each other is the greatest news I could ever imagine.
My sweet baby boy Matthew suffered a Grade IV intracranial brain hemorrhage at 5 weeks of age. He suffered from a Vitamin K deficiency that caused his blood to not be able to clot correctly which then led to blood gathering in the ventricles in his brain. After 6 weeks in the hospital he was able to come back home. The prognosis was vague and unclear. They were not sure what problems he would have or if there would be any developmental delays. He was quickly enrolled in several different therapies in order to help give him the best chances to learn to talk, walk and function as he needed. The first sessions were discouraging as they told us that our 3 month old was showing the characteristics of a newborn. But with lots of prayers and hard work Matthew quickly starting showing progress and began graduating from his therapy sessions. Today he had an evaluation to see if he needed to return to therapy and I am tearfully glad to report that he passed with flying colors! The therapist was impressed that Matthew could recognize all his letters and stated that he also has great cognitive skills. His motor, communication, and social skills are at par with other 2 year olds and in some areas he is even ahead of the curve.
I thank God every day for my children and for every moment I get to spend with them and with my loving husband. I am happy to have this great news that I can write down so that I never forget how I’ve been blessed. In the coming week we have more doctor appointments and more hurdles to cross and I pray that I have more good news to report. But I must remember that even if the doctors and specialists tell me something I don't want to hear, I have no reason to be unhappy. The simple fact that we have each other is the greatest news I could ever imagine.
Emma and Matthew - Christmas 2008
I am so happy to hear that you had such great visits! Emma and Mathew are so lucky to have such great parents.
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