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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Monday, January 18, 2010

Hurry Up And Wait

Ever been to a medical appointment in which the visit should have been a short visit, but turned into hours long? Frustrating to say the least huh?! I call these type of visits "Hurry Up And Wait" appointments. I had one of these such appointments this morning.

I had an appointment with my genetic counselor and perinatologist to discuss my pregnancy and to have a dating ultrasound to determine just how far along I am. This appointment should have lasted 1-1 1/2 hours at the most. But my appointment lasted 3 hours! I arrived at the perinatologist office at 7:45am, 15 minutes before my scheduled appointment time. While waiting to be called back, 6 other women entered the office with appointments scheduled for 8:00am. This should have been a big clue that this was going to be a looong appointment. I guess now that I'm pregnant my brain cells work a bit slower, so I missed the obvious clue.

I was finally called back 20 minutes past my scheduled appointment time. What was even more frustrating was that even though I was the first patient in the office 2 other women who arrived after I was called back first. We met with the genetic counselor, which took all of 30 minutes. There wasn't too much to discuss. I have seen the same genetic counselor and perinatologist with my 3 previous pregnancies. After meeting with the genetic counselor we were seated in a waiting room, where we sat for almost 1 hour awaiting our turn for my ultrasound. After waiting for almost 1 hour, we were finally placed in the ultrasound room. Where we waited yet again for another 30 minutes before the tech came in to do my scan.

I'm 11.3 weeks along. I figured as much. I know my body pretty well and know the exact day that I conceived. Our Poppy Seed measures 2 inches long. S/he is a happy dancer in there! S/he was just a moving around. It is truly amazing just how developed a baby is at 11.3 weeks. The baby has 2 arms and hands, 2 legs and feet and from what we could see of the brain a brain with 2 distinct and seperate hemospheres! At this point to us that is very promising news. Not that having another special needs child like Timmy would be a bad thing. Like any parent, we too want and pray for a happy healthy baby.

After my scan we had to wait yet again for about 30 minutes while the tech entered my scan findings into the computer. We were then placed into another room to do what???? You got it more waiting, to be able to see the DAoc. After speaking with the Doc and going over my blood glucose levels, which I am doing very well on my current dose of insulin. We had to wait yet again for someone to come in to drwa my blood for some testing.

By now you should be able to tell just how much patience I truly have. You guessed it, NONE!!!!

My next ultrasound will be on March 1st, at which time I will have a full anatomic scan of the baby. This week is very crazy with appointments. I'll have Floyd to scan the ultrasound pictures when he gets a chance, so that I can post them later.

P.S. Tippity (My nickname for my neice Tiffany)it is ok for you to talk now, MaaMaa and PaPa know about my pregnancy. Thanks for being Hush Hush and going along with Uncle Floyd's explaination of it being someone else who is pregnant. Yes, he honestly thought you believed him. Luv Ya!

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