Thursday, May 27, 2010


My precious Dad passed away on Monday. There are no words to describe the pain my family and I feel and there are not enough words to describe the love we had for him.
My dad had such a big presence everywhere he went. He loved people. He would talk to anyone no matter where he went. He could instantly become a friend with a complete stranger. My two brothers and I were so close to him. We know how much he loved us for he always showed it. My mom and him were a beautiful couple. They had so many wonderful years together. They had so much in common. They loved the same foods, the shore, antiques, flowers etc. My parents showed me what true love is and how to endure life's difficulties together. It is because of my dad's faith that I know the Lord today. And I know the Lord will help us through this difficult time. My dad is now in the presence of Jesus, home in heaven and we know he is at peace.

Please keep us in your prayers, my mom especially.

Sunday, May 16, 2010

Well, Wadda Ya Know!

Rylie had her orbital ultrasound on Thursday and now I'm more confused then ever. The ultrasound revealed that there is no fluid causing the swelling on her optic nerves. This is called Drusen or false papilldema. True Papilldema is what we've been dealing with all this time. In other words her optic nerves just have a swollen appearance because she was just born this way. It explains why the medicine has never worked to decrease the swelling. She was put through hell to be diagnosed with Pseudotumor and all along it was Drusen.

But it's still a little tricky and confusing. Why wasn't this ever detected by the ophthalmologist all these years? Well because Drusen becomes more visible to an ophthamologist as a child gets older. Maybe the medicine worked and that is why the ultrasound revealed no fluid. Doctor said that's possible, but not likely, because the optic nerves still appear swollen. Why when she had a spinal tap did it reveal a high opening pressure? Well that high number may just be Rylie's normal(because of Down syndrome). Not really convinced about that one. Drusen can still cause vision problems, but it's rare. Unlike Psuedotumor which is very vision threatening.

Rylie was taken off the medicine and will go back to the doctor in 3 months. I'm just going to pray we go back to normal now and nothing else develops. Her vision has been fine throughout this whole ordeal.

Listen Down syndrome Moms, If your ophthamologist ever looks into your kids eyes and sees swelling of the optic nerves, make sure the very first test ordered is an orbital ultrasound! Because the ophthalmologist said Drusen is very comman with kids who have Down syndrome.

I'm still confused about everything! The good news is I think I finally learned how to spell ophthalmologist. Ha!


Monday, May 10, 2010

Some Updates and a Prayer Request

Rylie had her 4th ear tube surgery today. It went very well. We were there by 7:00 am and out by 8:00 am. Wow, that's quicker then a doctors appointment! She just bounced right up and has been running around playing all day.

On Thursday we see the Neuro-ophthalmologist again. Before that appointment she will be getting an ultrasound on her eyes. She's doing really good and not showing any symptoms of the Pseudotumor, but hopefully we'll know more on Thursday.

Two weeks ago she already had an appointment scheduled with the original ophthalmologist, so I took Rylie just because I was anxious to see if the medicine worked. There was still swelling on the optic nerves, but her vision seemed fine. If on Thursday there is still swelling, they're going to have to try a new medicine or something else. Thank God she is doing so well, or I would be going out of my mind waiting for medicine to work.

Now, I have a prayer request. My dad had a pacemaker put in about three weeks ago. The recovery has been anything but smooth. There is so much going on with him. I wouldn't even know where to begin right now trying to explain it all. Some days are better then others and today was a better one. Please pray for him! He needs healing from his head to his toes. Thank you.