Sunday, April 27, 2008
Will update: Still no test results on genetic bloodwork and we have an ophthalmology appointment in Houston this coming Friday. Pray for that PLEASE!!!!!
Sunday, April 20, 2008
Will sits for hours in front of the tv watching practice videos from our church worship service. He can name all the musicians and knows what they play. Will currently has taken quite well to the drums, ELETRIC guitar (thanks daddy) , Keyboards, and vocals.....well...... We think he is the next American Idol! His favorite song is "Happy Day"! This video is kinda long, If you can make it to the end, it is worth it!!!!! Sweet Will! "My Savior Wives (lives)" ENJOY!
Thursday, April 17, 2008
Will had a CT scan of his brain and ultrasound of his abdomen done yesterday. It was a traumatic experience for us all as we didn't have a very "kid friendly" radiology tech and they didn't give our little guy ANYTHING to ease his fear and anxiety. I don't understand why not, but, whatever...... Needless to say, we were anxious to find out the results, so I called this morning and left a message for them to call me back with results. Well......PRAISE GOD, both the scans were normal. The nurse probably thought I was a fruit cake as I just bawled my eyes out, shouting from the top of my lungs praising God and thanking him for NO TUMORS! OH what a glorious day. My baby boy's brain is okay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So... 2 tests down, Hopefully only 2 more to go. We have an ophthalmologist appointment coming up to check his retinas and we are still waiting on his genetic testing to come back. We are trusting the Lord that these tests will all come back clear as well. Please continue to pray for our sweet boy! Oh how I want to shout it to the world that GOD IS GOOD....ALL THE TIME....ALL THE TIME.... YES HE IS GOOD!
I just want to thank all of you all for showering Will with your prayers. We are feeling them and the Lord is answering them.
Our love to you all!
Tuesday, April 15, 2008
Monday, April 14, 2008
When Will was 5 months old, I noticed a patch on his lower back. It looked like raised flesh colored stretch marks. When Will was a year old, my pediatrician asked that I see a dermatologist. The Dermatologist said that it was a Nevus of some sort and that it would all come together and turn dark Brown. My Pediatrician thought I should get a second opinion. We got one and she referred us to the Neurologist. She said it looked like a Shagreen Patch.
Will’s Neurology appointment was on Wednesday, April 9th. Will was diagnosed with a Shagreen patch which is commonly associated with tuberous sclerosis. He is going through genetic testing to see if he does have tuberous sclerosis. If he does, his case could be very mild (no real problems at all) or severe (possible growths on his major organs including the brain.) Here is a brief description…
Tuberous sclerosis--also called tuberous sclerosis complex (TSC)1--is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It commonly affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.
We know for sure that Will is not delayed in his cognitive development at all. He could name letters and numbers at 1yr and ½ (we love to show that off!) At two he could match up your car with one of his from his Hot Wheels collection. He is just so brilliant! Of course, I’m not biased at all! He does not have behavioral problems, and seems quite healthy. Our prayer is that he has NOTHING at all!
Will has numerous appointments that will further test for TSC and tumors. Please keep us in your prayers as we learn more about Will's condition and TSC.
I will keep you informed as we all learn more.