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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....

Saturday, May 29, 2010

Fw: Knock, Knock

        Knock, Knock! Who's there? Your Doctor. This isn't suppose to be a knock, knock joke. Wouldn't it be wonderful if in todays hectic and busy world doctors still made house calls? After this past week, I sure wish that they did.
On Monday, May 24th. I had next to my last ultrasound appointment at the peranatologist office. Nathaniel's growth is right on target with his gestational age of 29.5 weeks at the time of my appointment. His estimated weight was 3lbs 5oz. Everything looks great and Nathaniel is a very active little guy.
I also had an appointment with Mrs. Norma, a Lactation Consultant. I had thousands of questions about breastfeeding that she was more than happy to answer. My only experience with breastfeeding is pumping. I had the opportunity to pump my breast milk for Josiah during his short month here with us. It was a wonderful experience that I am so hopeful that I will get the opportunity of experiencing once again in full. With my other babies I was either told that I couldn't breastfeed, due to the eye medications that I was taking at the time. Which I have later found out not to be true. Or I didn't produce any breast milk, like in the situation with Timmy. Or I just didn't feel comfortable and the time just didn't seem right. The anticipation, thoughts and hopes I have of being able to strictly breastfeed Nathaniel arewhat is helping to keep my depression at bay.
On June 16th. I will have my first Non Stress Test. These will be preformed every 2 weeks alternating with a complete biophysical ultrasound to check on Nathaniel's growth and the amniotic level. My next scheduled ultrasound is on June 23rd.
Wednesday, May 26th was full of eye doctor appointments for myself and Timmy. I had an appointment with my Cornea Specialist. She is very pleased by the way my eye is healing. But she and the anesthesiologist are in agreement NO surgery to restore my vision until after Nathaniel's birth. Of course this news is disappointing for me. I try to see the positive side of the situation, Nathaniel's health and well being, my recovery time etc but this is hard at times, especially when my thoughts drift to the fact that I won't be able to see Nathaniel's precious face clearly at his birth. Floyd isn't the type of person to take tons and tons of pictures. So I'm hopeful that someone else will find it in their time and heart to fulfill this need for me during the time I am unable to see.
Three days prior to Timmy seeing his Occular Plastics Surgeon he had some bloody drainage coming from his right eye, which still has a conformer. It was our suspicion that the conformer had shifted and was no longer in the correct position within Timmy's eye socket, which was causing the bloody drainage, swelling and redness. Timmy's surgeon agreed that the matter had to be taken care of as soon as possible. So emergency surgery was scheduled for Friday, May 28th.
Timmy's surgery went well. Dr. Richard stated that in fact the conformer had shifted and was pressing against the inside of Timmy's eyelid. Thus this is what was causing the redness, swelling and bloody drainage. Dr. Richard said that he also had to remove a pus pocket. He didn't feel that this was a sign of an infection. He felt that it wasn't necessary to place Timmy on a round of antibotics. Dr. Richard instead prescribed Tobradex, which is an eye ointment which will aid in the healing o f the eye.
So in less than 72 hours we had logged about 650 miles. Anyone have any Preparation-H that they are willing to share?! LOL! If you know of anyone who continuously states that their life is boring, feel free to send them our way. I'm sure that after a week living in our shoes they will find their life more of a pleasure and not so boring.
Today Timmy's eye looks soooo much better. It really doesn't show any signs of him even have had surgery yesterday. This is the best that I have ever seen his eyes look after any surgery. His next scheduled surgery is on July 16th at which time Dr. Richard will take a different approach when removing tissue from Timmy's eye sockets in preparation of Timmy being able to get prosthetic eyes. During surgery someone from Carolina Eye Prosthetics will come to the eye center to measure Timmy's eye sockets. Probably within a few days following surgery Timmy will have an appointment at Carolina Eye Prosthetics when he will have new eyes made and fitted. Well this is how things progressed in January. So I'm only assuming things will proceed the same way this time as well.
At this time the only other exciting thing that is to come very soon is Emily leaving for 4 weeks to spend some time with grandma in Illinois. 10 days and counting....... 

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