Second Visit with Dr. Kaplan
Late December 2009 to Early January 2010 – Today, Tristan’s appointment with Dr. Kaplan at the Children’s Hospital of Philadelphia (CHOP) went well. Tristan sees him only once a year because he does not have the more serious conditions that Dr. Kaplan follows with respect to osteoma cutis. It was good to see Dr. Kaplan again. Dr. Kaplan looked at Tristan’s new bone spurs, and said they are still superficial, and they do not appear to grow deeper into the muscle. He said at this point if Tristan did have one of the more severe forms, we would have seen the bone progress into the deeper tissues. He said he was 98% certain this would not occur. We were very happy to hear those words verbally. His primary concern now is Tristan’s cognitive and developmental progress. He said there is an entire range of delays associated with the hormone-based skin genetic defect like Tristan has. He said we simply need to do anything and everything we can to prevent him from falling further behind developmentally. He was very happy to hear that Tristan started a language-intensive preschool through the county school system five afternoons a week. He hopes we can get him to say more than the five words he says now at three years of age. Dr. Kaplan did say he was pleased Tristan picks up sign language quickly, because if he never learns to speak verbally, he can still communicate like many people with his hands. I pray that he will speak, but if not I will thank the Lord for his ability to sign.
I have such a hard time with Tristan’s condition. Dr. Kaplan said sometime when the sperm and egg were doing their thing, that something went wrong. As a result, bone grew in areas where it should not have grown. He said he conducts research to try to determine why this occurs. All I know for certain is my pregnancy with Tristan was never perfect, because he never seemed to want to grow inside me. He was born very small, but you would not know it today other than he is so abnormally short.
Sorry, I must vent again. So, I know this is not always politically correct, but I do experience days when I wish I were not the mother to a special child. I love my son dearly, but there are days where all he does is scream, and not a little, but nearly constantly. He goes through cycles where he bites himself to the point of bleeding, he never will give eye contact, and he started to chew on nearly everything. Our move to Maryland really sent him into a downward spiral due to the stress of it all, and only now do I feel we are finally able to make headway again. I have many moments when I want to escape from my life and cry endlessly, because I do not know what to do or how to handle it. I know part of what he does is his age, but part of it there are no words to describe what he goes through unless you feel it in your heart as his mother day in and day out. I am so thankful we decided to have kids close in age, because if I did not have Keira now I doubt I would have tried for another child due to the fact that Tristan takes up even more time and energy than he did even six months ago.
Do not misunderstand me, because Tristan makes tremendous headway. The few words he does say are a real breakthrough. I tried today to have him say “doctor” and he did pretty well. I clapped and signed happy/yeah/wtg. He was so proud of himself and his precious smile beamed.
So all in all, nothing earth shattering at all, but now I cannot wait to hear back on the results of the ADOS test to determine if and where he lies on the Autism Spectrum Disorder (ASD). Our appointment for those results comes up here on January 19th. Please keep me in your prayers as I really struggle with this and have these moments where I feel I should not have been his mother.