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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, October 25, 2010

Mama and Daddy's Little Helpers

Oh Daddy does she have too? This is torture! It doesn't take FOREVER to give me a bath!
Chillin with my brother... Zach you are waaay too funny!

Sunday, October 24, 2010

Sunday's - School Podcast - Welcome Back



Timmy started back to school this week, following his 3 week Fall break.  He really missed being with all of his freinds during his time from school. He is sooo happy to be back in school once again. Can you tell?

Saturday, October 23, 2010

3 - Months Old

And you think I'm gonna sit here alone for how long? I'll give you five minutes and then I'll scream. Umm, on second thought, hurry up and finish taking my picture so I can scream so that you will pick me up and hold me again!

I'm lying here like a good boy ONLY because it's nap time and I'm tired.

Daddy says that I have to share you with Tim-Tim and Emily. I don't know if I can take yet another night of Daddy singing Christmas songs while I'm trying to go to sleep....!

Saturday, October 9, 2010

Doctor Doctor

Wheeeew, what a week! This past week was filled with Doctor appointments and  12-+ loads of laundry. If I had 3 wishes, after this week the first wish would be for everyone to be sooo healthy that all doctors would have to go out of business. Second wish would be for nudity to be an optional choice. (Not that I would actually go around nude, but I would give it some serious thought. I hate doing laundry!) And my third wish would be for the 2 previous wishes to come true.

On Monday, Oct. 4th Nate and I had appointments with our eye specialists at Duke Eye Center. Not much to report from my visit. Everything is looking great. At my next visit my doctor will have to do some touch up lasering to try to get rid of a membrane which forms behind the prosthesis and makes the vision a bit distorted. The distortion isn't that noticable unless I'm reading. My IOP (Inner Occular Pressure) was good. So restarting my eyedrops to control my glaucoma isn't necessary at this time.

Nate's IOP was down at this visit, thank goodness. The IOP was 19 in his left eye and 15 in his right. Optimal is in the low teens. The plan at this point is to continue to closely follow Nate and frequently check his IOP. Hopefully the eye pressure will remain down. I don't want to have to even consider the thought of having to give Nate eyedrops at such a young age. But of course, we will do whatever is necessary to save what vision he has. Dr. Young also referred Nate to our local Blind Services, so that he can start getting vision therapy.

Nate, myself and Dr. Afshari, my corneal specialist had our picture taken together, for a human interest article which will be featured in VISION a magazine published by Duke Eye Center. The article will be published in the magazine later this year.

On Wednesday, Oct. 6th. Nate had an appointment with his Geneticist at UNC. We are having him tested for the PAX-6 gene mutation that Floyd and I carry, being that he has a visual impairment. Nate also has an MRI scheduled for Oct. 29th to rule out an possibilities of him having a brain malformation. We are awaiting a date for his ABR (Audiotory Brainstem Response), a more extensive hearing test than the newborn hearing screening. Nate passed his newborn hearing screening, but we want to cover all of the bases and rule out any possibilities of problems, which are associated with the PAX-6 gene mutation. Nate also had blood drawn to test his hormone levels and to check him for diabetes. We are still awaiting those results.

Thursday, Oct. 7th. Timmy had a follow up appointment with his Urologist. She removed a stitch from his "winkie" which failed to dissolve on its own. We discussed the possibility of her needing to revise Timmy's "winkie." Now that he has been circumcised, Timmy pee-pees straight up into the air. Timmy has been doing GREAT with his potty training. Now that he is unable to get his pee-pee stream to go into the potty, he is refusing to go in the potty, holding his pee for as long as possible, which is causing his bladder to spasm and Timmy to be in pain, which in turn Timmy goes toto a full blown tantrum. Being that the swelling can take up to 6 months to resolve, she wants to wait and reexamine Timmy in early March to see if things have improved.

Being that Timmy has a Micro-winkie, we have spoken with his Endocrinologist about doing another 3-4 months of testerone injections, to hopefully help his winkie grow. Timmy had testerone injections when he was about 2 years old, which helped to improve his winkie growth. But Timmy's Endocrinologist won't consider starting the treatment until after the Urologist has released Timmy from under her care.

Zach also had 2 appointments on Thursday, Oct. 7th. His 1st. appointment was with his therapist. The therapist decided not to restart Zach on his medication for ADHD. He wants to wait to see if In-Home-Therapy along with better structured behavior control will benefit Zach better.

In my opinion, I feel that Zach will benefit more from the structured behavioral modification rather than medications. In the past when he was taking medications for his ADHD I honestly didn't see any improvement. Except for the first couple of weeks while the medications was working its way into his system. At this time Zach was more calm and focused.

Zach's 2nd appointment was with the dentist. Earlier this summer Zach had a tooth infection and his dentist put him on a round of antibotics. This was a follow up appointment to discuss whether the tooth should come out or do nothing being that Zach wasn't having any pain. We opted to do nothing at this time, being that the tooth is already loose and may come out on its own. If and When the tooth does come out Zach will need a bridge put in the tooths place.

Thank goodness we have an almost 3 week break before the next  cluster of appointments out of town begins.

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