Saturday, March 30, 2013

Growing Up With Noah

 I see a big difference in children that have grown with Noah.
 And children that don't.
 Children that grow up with Noah see him as just a another kid. They don't see him as being different.

 They include him in their everyday activities without being asked.

Imagine what the world would be like if all children could grow up with a child like Noah......

Wednesday, March 20, 2013

We wonder.......

 Noah made it through the winter pretty healthy until last week. He started out the week with pink eye and bronchitis and by Wednesday he had two ear infections and pneumonia. He spent a lot of time on our new big comfy couch. After 3 days of rocephin shots he is doing much better.
 On Tuesday we headed up to the Cleveland Clinic for a follow-up of his MRI. We found out that he is structural sound for a cochlear implant.
 We have really been struggling with the whole idea of  the implants. What is best for Noah? Yes, his head is structurally sound but, is his brain going to be able to process the sound? Will we have the surgery done and it won't make a difference?
Since the last time we talked with Dr. Malhaltra the implant team found a doctor in Michigan that can do a procedure that can test  the brain on how it  processes sound. Is that answer to prayer or what?  Right now they are working with insurance to see if they will pay for him to be flown in to do the test on Noah and a few other children. That way we will know if  cochlear implants are what is best for Noah before the surgery is even done. I'm to call in a week to see where they are at with that process. Please keep Noah and the Implant Team in your thoughts and prayers. It would be awesome to have this test done and know for sure if cochlear implants are going to help Noah.

Sunday, March 10, 2013

Noah's MRI

 We had to be at the Cleveland Clinic at 7am on Friday morning. We decided to go on Thursday evening, that way we wouldn't have to get up so early. Going the night before sounded good in theory but, Noah doesn't sleep well when he isn't in his own bed. He may have gotten 2hrs of sleep. Which meant I got 2 hrs of sleep. Watching him have fun in the pool made it worth it though.
 Waiting for them to come get him for his MRI. I was able to carry him back and his Dad was able to walk back with us for the first time.
 Even though Noah hasn't taken one step in his Peach's Neet Feet he has still found a way to wear them out. Noah did so well before hand. Usually he works him self and gets very congested. He actually smiled and laughed at the  anesthesiologist. (She was very good with him. She treated him like any other child, instead of assuming he doesn't understand like most of them do.)
 Since he hadn't slept the night before he had a hard time waking up. Corduroy puppy even tried tickling his ear to wake him up.
 He finally woke up just enough so we could head home. We go back on March 19th to find out the results of the MRI. Hopefully we find out that Noah is a good candidate for a Cochlear Implant.
We finished off our weekend by going to see Oz.  It was Noah's first movie with hearing aides and glasses. It was awesome seeing him scan the movie screen. Now I can't wait to take him to another Indians game.

Friday, March 8, 2013

3-8 Trisomy 8 Day


We are often asked what is wrong with Noah. When we say he has Trisomy 8, they then ask, "What is that?"  Have you ever wondered the same thing? And was afraid to ask?  Well today is March 8th, Trisomy 8 awareness day.
Noah was diagnosed with Trisomy 8 when he was 15 months old.  After over a year of wondering and many test we got the diagnosis. It was very devastating to hear but, we finally had answers. We look at all the things that could be be wrong with him and then felt very blessed that he had very few if any of the characteristics. So sadly Noah was hit with the double whammy. He also has Cerebral Palsy due to lack of oxygen at birth and no oxygen given to him to help him out.
For more info on Trisomy 8 read below.......
While you are reading, this do me a favor and keep Noah in your prayers. He is having a MRI and CAT scan today. It is our next step to determine if Noah is a good candidate for a cochlear implant.
Trisomy 8 is defined as the presence of three full copies of chromosome 8 in all of a person's cells. Mosaic trisomy 8 describes the situation that occurs when only a portion of these cells contains three copies of chromosome 8, while others contain the usual two copies of that chromosome. For example, people with mosaic trisomy 8 may have cells in their blood and other tissues with the normal chromosome number, but may have cells in their skin with trisomy 8. 
The condition is sometimes also referred to as trisomy 8 mosaicism syndrome (T8mS) and mosaic Warkany syndrome. Common characteristics of T8mS are distinct facial features, including low-set or abnormally shaped ears and a bulbous-tipped nose, eye abnormalities like strabismus and corneal clouding, bone and tissue abnormalities, various structural heart problems, palate abnormalities, hydronephrosis, cryptorchidism, mild to moderate mental delays, and deep hand and feet creases. These characteristics tend to vary widely from person to person. 
Characteristics of T8mS vary. In other chromosome mosaicism conditions, more severe symptoms and a worse prognosis are associated with a larger proportion of cells with an abnormal chromosome number being present. Interestingly, that does not seem to be the case in T8mS. The percentage of cells with trisomy 8 does not appear to correlate with the types of symptoms the affected person experiences.
The creases on the palms and soles of people with T8mS are the most unique characteristic of the condition. On the palms there may be more arches than usual on the fingertips and a single crease running across the palm. The creases are often deep and vertical, with a furrowed appearance, on the soles of the feet.
People with T8mS often have distinct facial characteristics. This can include a wide upturned nose, thicker and down turned lower lip, and low-set and prominent ears that may not be shaped in the usual way. They may also have abnormalities of the palate, including a cleft (opening) or highly arched palate.
Mental retardation can occur with the condition, and the degree of mental delays varies from mild to moderate.
Other findings in T8mS can include those of the bone and tissues. These may be narrow shoulders, absent knee caps, abnormally shaped toes, tighter joints, slender palms, extra or missing ribs, and curving of the spine.
Eye abnormalities are seen in T8mS, and the two most common findings are corneal clouding and strabismus where an eye turns in. These may or may not cause significant vision problems and require treatment. More rare eye problems can include a smaller eye size, smaller eye openings, droopy eyelids, wide-set eyes, tilted optic discs, nearsightedness, retinal abnormalities, and epicanthic folds.
Occasional other characteristics can include structural heart problems, hydronephrosis, underdeveloped genitalia, cancer, and testes that have not descended into the scrotal sacs.




Wednesday, March 6, 2013