Reece goes in for his periodic thyroid test tomorrow...or today...what time is it anyway? There's always concern about these tests but he passed the last one and things do not seem to have changed since. I feel confident.
He came downstairs as my wife were in the kitchen talking. He was half asleep with his eyes closed. We wrapped him up on the couch where he is sleeping now. I'll take him up when I go to bed. He looks so peaceful when he's sleeping. But as my wife observed just a moment ago, with his chronic ear problems, ADHD, and sensory issues, he really has no peace while he's awake. I grieve that for him.
Met a gentlemen, a business partner actually, for lunch today in Atlanta. Mixing in business and personal conversation over lunch, he shared that his oldest son is mildly autistic. Great guy. I could tell that he shared the same loyalty and dedication to his family that I feel. We want to make sure our kids are set for life long after we're gone.
While this blog is mainly about Down Syndrome, I want to communicate that any Dad with a child who has special needs is welcome here. So please encourage your circle of friends in your community to join us. If we can provide support and comfort for just one Dad...
When I consider the ratios for Autism and Down Syndrome births around the world, I have to believe there's millions of Dads like us who share this struggle. Let's connect and see how we can help each other out. I have created a Yahoo group for this blog...that sounds odd. I have created a Yahoo discussion group that mirrors the theme for this blog. As soon as I figure out how it works, I'll post the link here on this blog. Then we can interact with each other, share experiences, and advice. We can pray together.
Stay tuned and be blessed.
Showing posts with label Medical Issues. Show all posts
Showing posts with label Medical Issues. Show all posts
Friday, August 14, 2009
Wednesday, August 12, 2009
Down Syndrome and Ear Problems
The last week and a half or so have been kind of a roller coaster ride with my son. In a nutshell, he went in for his 4th set of ear tubes (Down Syndrome children are prone to ear problems) and was diagnosed with a massive cholesteatoma in his right ear. We were shocked and scared. Surgery was imminent and would likely leave him deaf in that ear. Mix in all of the other potential complications...we were scared.
Prayers from family and friends appeared to have come through when the doctor called and, surprised by the CT Scan images and the biopsy, concluded that there was, in fact, no cholesteatoma. To say that prayers were answered is an understatement. There is still "something going on" in his right ear. Surgery is scheduled for September 1 to clean out his ear and replace his tubes if we can get rid of a perpetual infection.
It's hard to watch your child struggle with any medical challenge. To know he is in pain and cannot hear well is difficult to manage. The amazing thing is that throughout the whole week of testing and waiting for results and preparing for emergency surgery, I was calm inside. I was able to manage my emotions, focus on the task at hand at work, and still be a strong leader for the family. Prayer works.
Considering the challenges other children with Down Syndrome face, my son has it pretty good. We have not had to experience heart surgery, or feeding tubes, or GI problems. I can imagine it has to be difficult for some dads to get up in the morning and face the pressures of being a husband, father, employee, boss, or what-have-you while your son or daughter struggles to eat, or breathe. More difficult than anything I've faced.
I guess I can thank Paul for his letter to the Philippians (4:13) "I can do all things through Christ which strengtheneth me."
Words to live by.
I welcome your thoughts and experiences. Give me a shout!
Prayers from family and friends appeared to have come through when the doctor called and, surprised by the CT Scan images and the biopsy, concluded that there was, in fact, no cholesteatoma. To say that prayers were answered is an understatement. There is still "something going on" in his right ear. Surgery is scheduled for September 1 to clean out his ear and replace his tubes if we can get rid of a perpetual infection.
It's hard to watch your child struggle with any medical challenge. To know he is in pain and cannot hear well is difficult to manage. The amazing thing is that throughout the whole week of testing and waiting for results and preparing for emergency surgery, I was calm inside. I was able to manage my emotions, focus on the task at hand at work, and still be a strong leader for the family. Prayer works.
Considering the challenges other children with Down Syndrome face, my son has it pretty good. We have not had to experience heart surgery, or feeding tubes, or GI problems. I can imagine it has to be difficult for some dads to get up in the morning and face the pressures of being a husband, father, employee, boss, or what-have-you while your son or daughter struggles to eat, or breathe. More difficult than anything I've faced.
I guess I can thank Paul for his letter to the Philippians (4:13) "I can do all things through Christ which strengtheneth me."
Words to live by.
I welcome your thoughts and experiences. Give me a shout!
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