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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, March 2, 2009

Playing Catch-Up

It has been a while since I have updated, sorry. Alot has happened, but I will only reflect on the highlights of the past 6 weeks.

The reason for the lapse in updating the site is because my vision had gotten too bad and I could no longer read the computer. My keratoprosthesis (artificial cornea and lens implant) surgery had originally been scheduled for Feb. 9th, but the surgery had to be rescheduled, due to an emergency case. I had my keratoprothesis surgery on Feb. 16th. I'm happy to post that my surgery was a success!!!!! Honestly, I feel that this procedure has a better outcome compared to my donor cornea transplant in April 2001.

Unfortunaltely the Ophthalmologist at NIH have decided that they are not able to remove Floyd's cataract. The Doctors feel that his eye condition is above their abilities and that the surgery would be too risky. Floyd has applied for a supplimental insurance. Once he receives his insurance card, we will be on the hunt for a Ophthalmologist who will be willing to take the risk and preform the much needed cataract surgery for Floyd. I have always said, "There are thousands upon thousands of Doctors in this world. You may come across many thousands of Doctors who will refuse to help. But somewhere in this large world, there is a caring Doctor who will be willing to help. You just have to be willing to take the time to search." Hopefully out journey for an Ophthalmologist will be short.

As of Feb. 7th Emily is FINALLY COMPLETELY POTTY TRAINED! WOOHOO!!!!!! It took what seemed like forever to get her to go poop in the potty. She kept saying that she was scared to go poop in the potty. When asked why she was scared, she was unable to tell us. So I decided that I had had enough of her "knowing" when she had to go. She had all of the tell-tale signs of being ready. Emily would tell us that she needed to go poop. She would go put on a Pull-Up when she had to go or she would hold her poop until bedtime, when we would put on a Pull-Up so that she wouldn't wet the bed. She would also announce when she had finished pooping and needed her Pull-Up changed. Despite my dad accusing us of abusing her and threatening to call the police and my mom coming running next door to see exactly what we were doing to Emily. I was adament that Emily was not going to poop in her Pull-Up anymore. It was time that she faced her fear and overcome her fear. I sat in the bathroom with her while she sat on the toilet. We looked at books together. When she just couldn't hold her poop anymore and she finally went in the toilet, Emily was both excited and surprised that she had gone and nothing bad had happened to her. She had finally earned her rewards. Daddy had promised to put her T.V. back into her room when she would go, Merry promised to take her to the beauty polar and Dotty promised to bring her dog to visit Emily. Emily now insist that someone come look each time that she goes. She is still so proud of herself.

We have new surgery dates for Timmy surgeries. The 1st surgery has been rescheduled for March 26th. At this time Dr. Z will be re-opening Timmy's nasal passages and removing his tonsils. The 2nd surgery has been rescheduled for April 25th. (? I'm waiting for a mailing to comfirm the actual dates.) During this surgery Dr. Z will be lasering Timmy's airway just above his trach to remove scar tissue and remove his adnoids. On May 7th Dr. Z will do a scope of Timmy's upper and lower airways to make sure everything looks good. If things look good, Dr. Z will possibly try removing Timmy's trach.

Timmy saw his neurologist on Feb. 26th. Dr. Greenwood was very impressed that Timmy is now able to sit for very long periods of time unsupported. Eight months ago Timmy was sitting for only short periods of time unsupported. We discussed the "spells" that Timmy has ocasionally. We have come to the conclusion that most likely the "spells" are only what we have termed Timmy-tantrums. When Timmy has one of the "spells" his face turns red, his arms go out to the side, his entire body stiffens, he draws up his legs and he becomes vocal, with sounds as if he is in pain (uh,uh,uh). The vocalization and stiffening immediately disappear once he is picked up and held. We also discussed Dr. Greenwood scheduling an abdomenal MRI. Dr. Muenke and staff at NIH are very interested in an MRI of Timmy's pancreas. Dr. Greenwood is suppose to be getting back to us with the date for the MRi.

Timmy had surgery on Feb. 27th with Dr. Richard to replace the comformers in his eyes. The surgery was very stressful and painful than normal for Timmy. Dr. Richard had to remove some tissue from the eye sockets, so that the comformers would fit. He also slit each eyelid to extend the eyelid. Stitches were place in the eyelids where they were slit and extended. In the left eye triple the size of the previous comformer was placed. And in the right eye double the size of the previous comformer was placed. Timmy's pain level this time required us to make a phone call to the Doc on call, so that a stronger narcotic could be called in to Timmy's pharmacy. Regular Tylenol just wasn't helping the pain. Timmy's eyes also bled more than from previous surgeries and his eyes are more bruised.

Today Timmy is feeling much better. He is laughing and responding approperately to his favorite toys and songs. His blood glucose levels are elevated. This is normal following surgery. But we are troubleshooting just to make sure it isn't a bad insulin site or insulin issue. Hopefully the blood glucose levels will return to their pre-surgery levels soon.

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