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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....

Tuesday, January 26, 2010

Wink, Wink



Timmy went yesterday and had his very first fitting for his left prosthetic eye. We have been talking to Timmy about this very special day for quite a while. I (mom) wanted Timmy to have nice pretty green eyes. But every time I would speak to Timmy about possibly one day getting green eyes, he would protest. So one day I asked him what color of eyes he wanted? I started naming off colors. Brown? No response from Timmy. Green? A definate disapproval by his vocalizing his disagreement. Hazel? No response. Blue? Timmy started laughing hysterically. This his Timmy's way of telling us YES. So blue eyes it is.

You can't tell much about his new blue eye in this picture because the eyelids are still pretty swollen from Friday's surgery and Mr. Boyd from Carolina Eye Prosthetics Placing and Removing the eye to get the perfect fit. Timmy also may need surgery in the future to shorten the muscle in his left eye lig so that his eye can be more open.

This is the very first picture that we have of Timmy with such a broad smile. This picture itself speaks a 1,000 words!!!!!

Isn't he just the cutest here????

Saturday, January 23, 2010

Ultrasound Pictures

Here are the ultrasound pictures from my appointment on Jan. 18th. Sorry they are a bit late being posted, but our week has been crazy! This ultrasound was mainly scheduled to determine just how far along I am in my -regnancy. On the day of the ultrasound I was 11.3 weeks pregnant. We had the ultrasound tech (Angela) just to take a quick peek at the brain and eye orbits. It is a bit early for a "definate" diagnoses of a "healthy" baby. BUT she could tell that there were 2 eye orbits. And there were definately 2 seperate brain hemospheres! Both of these are very promising news for us. I have my full anatomy ultrasound on March 1st.






Friday, January 22, 2010

Persistance or Fate

Today Timmy was suppose to have a double surgical procedure. He was suppose to have eye surgery to remove the sutures and glue from his eyelids, which was helping to hold the conformers in place. Being Mr. Timmy's favorite pass time was poking the conformers out. And to replace the conformers with a larger size. The eye surgery went well. We have a surprise post coming early next week.

The second surgery was suppose to be for circumcision. This surgery didn't take place. Fate has FINALLY guided us to a Urologist whio is willing to help Timmy with his best interest at heart.

When Timmy was born, he had a micro-penis and his testicles are undescended. Shortly following his birth, Timmy started having frequent UTI's. At a little over a year of age Timmy's Nephrologist (kidney Doc) placed him on a daily dose of an antibotic to try to help prevent the reoccuring UTI's/ This daily dose worked for a short while. But as Timmy's body adjusted to the antibotic, it stopped doing its job. So we had to switch between 2 different antibotics every couple of months to try to prevent Timmy's body from becoming use to the drugs.

Shortly after Timmy turned 2 years, I was speaking with a mother who has a son, who had some of the same issues that Timmy was having. She suggested that we speak with Timmy's Endocrinologist about a monthly dose of Testerone to help Timmy's "Manhood" grow, which in turn "may" help in preventing the reoccuring UTI's. Timmy's Endocrinologist agreed to the monthly Testerone injections. Timmy received 4 monthly injections of Testerone, which did help his "Manhood" to grow. But the frequesn UTI's didn't go away.

We decided that being Timmy's "Manhood" was now a bit larger, a circumcision might be possible and solve the problem of the UTI's. So we went on a search for a Urologist, who would be willing to descend Timmy's testicles and to circumcise him.

We searched for 3 years with absolutely no success. Each Pediatric Urologist that we spoke with felt that a circumcision wouldn't solve the problem with the frequent UTI's. And even though there is a very slight risk of cancer if Timmy's testicles aren't descended, that the chances are sooo slim that doing the surgery was unnecessary. At the age of 4 years, when Timmy hadn't had a UTI for quite sometime the Urologist felt that it would be safe to take him off of the daily dose of his preventitive antibotic. The Urologist felt that Timmy's UTI's were something that he just needed to outgrow.

Late last summer Timmy started having UTI's once again. One maybe every few months. Nothing as frequent as they once were. In December we approached Timmy's Urologist once again and asked him to PLEASE consider preforming a circumcision. He Finally agreed to do the circumcision, but still felt that descending the testicles was unnecessary.

Persistance or Fate Finally came upon us. Timmy's Urologist was unavailable to preform the circumcision on surgery day, but his associate agreed.

When Sherry Ross came out from surgery and stated that she did not do the circumcision, Tears filled my eyes. I immediately felt like we had been let down once again. This is a procedure that Timmy desperately needs. Dr. Ross went on to explain that she didn't do the circumcision because upon examining Timmy first, she noticed that his testicles needed to be descended. And instead of putting him through surgery twice she felt that it best to wait and do both procedures at the same time. It took everything in my body to hold back my tears. I was so releived that we had finally found a Doctor who was willing to help, who was putting Timmy's health and best interest at heart and who didn't seem to even think twice about Timmy's multiple complex medical conditions. Dr. Ross gave us her business card and asked us to schedule a clinic appointment at our earliest convience so that we all could discuss Timmy's necessary surgery.

We have an appointment to meet with Dr. Ross on Feb. 4th. Hopefully Timmy can get this surgery sometime in early March or April.

Tuesday, January 19, 2010

Just For Fun

Just for Fun and Giggles I took an at Home Gender Prediction Test this morning. The results are 82% accurate. I came across the website and information on the Gender Prediction Testing a couple of weeks ago while reading things of interest online. I actually had forgotten about the Test Kit, until after my ultrasound yesterday. Floyd and I were discussing Boy/Girl names, clothing, baby bedding etc and this made me somehow remember. The reason I had forgotten about the test was because I'm a thrifty spender and penny pincher. Each Gender test cost $35!
Once I mentioned that there was such a test, Floyd just had to run out and buy a test. His curiosity and excitment of the baby's gender gets the best of him with each of my pregnancies.

The results of the Home Gender Test says that we are having a little girl! I'm not going to put all of my faith in these test results. I prefer to wait until my March 1st ultrasound to have the results confirmed. And then still I rather wait until the baby arrives on my due date of August 6th or the end of July when my C-section will most likely be scheduled.

As a mom the gender of the baby isn't what is important. Having a Happy and Healthy baby takes top priority.

If you are pregnant and would like to take the Home Gender test you can find the info at IntelliGender The test can also be purchased at CVS Pharmacy, WalGreens Pharmacy and Target. Have Fun and let me know what your results are.

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!