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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....

Sunday, July 18, 2010

We Have Dates And Other Stuff

        Our little guy will be arriving via c-section on July 23rd as long as his lungs are fully mature. I have agreed to have an amniocentesis on the morning of my scheduled c-section to check for lung maturity. I will be 38 weeks pregnant on July 22nd. So Floyd, my Docs and myself have all agreed that if by that having an amniocentesis at this time would be in Nathaniel's best interest and if by some chance I should have complications following the amniocentesis if Nathaniel's lungs aren't fully mature, the complications wouldn't be as severe for Nathaniel if he should have to be delivered.
My corneal surgeon has also put me on her surgical schedule for surgery to replace my keratoprosthesis on Aug. 24th. This date is tentative to how I'm feeling following my c-section and if they are able to get my prosthesis ordered and delivered by my surgery date.
So I>we are getting very excited with these upcoming dates! I can hardly wait to be able to hold my little muffin. And being able to see to read once again means soooo much to me. I have told everyone that once I get my eye sight back Nathaniel and I are going into hybernation for the next 6+ months because I have A LOT of research on the internet and reading to catch up on.
I have learned one good lesson following the loss of my eye sight. NEVER PUT OFF THINGS TOMORROW THAT CAN BE DONE TODAY! There was and still is tons of things that I should have done like cleaning out my file cabinet organizing Timmy's and Emily's closet etc while I had sight, but I kept putting these things off until tomorrow. Now over the past 5 months all of those tasks that I put off has only grown.
On July 16th. Timmy had eye surgery yet once again. This time Dr. Richard tried a different technique to try to prepare Timmy's eye sockets for prosthetic eyes Dr. Richard in the past has only been removing scar tissue from Timmy's eyelids to try to make room for an prosthetic eye. This has failed each time. During this surgery Dr. Richard decided to try to remove fatty tissue from the center of Timmy's eye socket. This was a very touchy surgery, being that there wasn't an MRI to guide Dr. Richard and he had no idea as to how far he was able to go into Timmy's eye sockets without getting into trouble and possibly puncturing brain matter. Dr. Richard is hoping that by removing fatty tissue this time Timmy will not develop scar tissue or at least not as bad. We are to call and schedule a follow up surgery in about 8 weeks or so. During this upcoming surgery Dr. Richard will check for scar tissue build up and if everything looks good Mr. Boyd will make molds for Timmy's prosthetic eyes.
We have decided that if this doesn't work we will give up on trying to get prosthetic eyes for Timmy. What are we gaining in the long run by keeping on putting Timmy through all of this pain from surgery after surgery? NOTHING! With or without eyes it won't change the care we give Timmy or the amount of love we have for him. Who really cares what strangers have to say or think about Timmy not being able to see or having eyes. With all of the rudeness and cruelity in this world there will always be someone who has some cruel and rude comment. So either way it is left up to us as Timmy's parents to educate and inform others.
School starts for Timmy on July 21st. I can't believe that our little guy will be attending 1st. grade this year. Emily's 1st. day of school will be on July 22nd. For some strange reason our school system does what they call staggered enrollment for kindergarteners. This is where a small number of students attend class each day for the first 3 days of school. I'm not sure what they feel is being accomplished by having students to attend class only 1 day the first week of school. In my opinion if a student is going to have issues the issue isn't going to be solved in just one day. And will most likely get worse once all of the kiddos are in school at once. Besides now-a-days most likely the majority of students have or are in some type of daycare or preschool setting so that both parents can work.
I also can't believe that on July 21st. it will be ONE FULL YEAR since Timmy had his trach removed!!!!  Time surely flew by. It was nice within the past year for Timmy not to have had any unscheduled hospitalizations. I really think that his trach removal and not having at least 1 unscheduled hospitalization shocked a lot of people. But knowing Timmy, as his parent I knew he was able and ready to prove Docs wrong yet again.
An exciting week ahead. And a busy month to follow. I can't wait until the day that I'm, able to finally be able to keep up with this blog and make some changes to its look.

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