Teaching Peers About Their Special Friends

Timmy has been in school now for 8 weeks. (He attends year round school). My experience with our local school system goes back almost 20 years. I have to say, I'm veeery impressed with the staff at the school at which Timmy attends. Timmy's teacher AWESOME! Mrs. Bishop believes that it is very improtant to help the other students in the school to understand how their special friends learn and what technigues are used to help them learn.

Each week or so a different class, from Kindergarteners thru fifth graders come into Mrs. Biships class to work along side and help out their special friends. It is truly amazing to watch these "typical" children being so caring, patient, understanding and eager to help, while learning about their special friends. It is so heart warming to see these children bonding and connecting with their special friends, through simple activities like pushing their wheelchair to the lunch room, reading them a story, working on craft activities or helping Mrs. Bishop put together their folders that are sent home nightly.

Here is a video that Mrs. Bishop put together with the help of her 2 oldest children, who also attend the same school as Timmy. Mrs. Bishop uses this video to help the younger children to understand exactly what goes on in her classroom each day and how her students learn.

Enjoy!

A Typical Morning

A typical morning Monday-Friday at our house starts at 5:30am, IF we all are lucky and Timmy has slept through the night. I get out of bed, splash my face with cold water to wake myself up, grab my cell phone and head downstairs. I get Timmy's medications and breakfast ready. By this time Emily has woken up and is demanding to watch cartoons. I explain to her for the millionth time that there will be no cartoons until she is dressed for the day. She starts crying and goes running to her dad, whom she knows will give in and turn on the T.V for her. I go in and change Timmy's diaper and check his blood glucose level. At about 6:15am Floyd finally comes downstairs. Sometimes Floyd will feed Timmy and I'll dress Emily and other times I'll feed Timmy and Floyd will dress Emily. About 6:40am in walks Zach. Typically weekday mornings are uneventful for us.

On Saturdays and Sundays if Timmy is a good boy and sleeps all night, we all are able to sleep in until 7:00am, at which time one of Timmy's nurses arrives to help out.

Here is how an all but typical Saturday morning plays out for us. I wake up a bit before 7:00am and go unlock the door so that the nurse can gain enterance at 7:00am. I splash my face with cold water to wake myself up. Emily's and Zach's radar has kicked in and they both have sensed that someone in the house is awake. They both get up. Let the sibbling rivalry begin! There is a race to the TV in the family room.

Zach: I made it here first, so we have to watch what I want this morning.
Wmily: NO, I want to watch 72.
Zach: Emily, you will like what I want to watch. Look, doesn't it look interesting?
Emily: Nooooo, I want to watch 72!
Zach: But Emily, I was here first.
Emily: MOMMY, Zach want let me watch TV!

Floyd by now has made his way downstairs and is starting a pot of coffee. THANK GOODNESS! While Floyd fixes us both a cup of coffee, I explain to both Emily and Zach IF they can't find something that they both can agree on to watch, we all will just watch the morning news or I could just turn the TV off. As I take Emily to her room to help her get dressed for the day, Zach retrieves the remote control from atop of the TV. The batteries are dead, so he goes on a battery hunt. He finds 2 AA batteries in Timmy's room, which he uses ot replace the dead batteries. Emily is now dressed and runs back into the family room.

Emily: MOM Zach want let me watch TV.
Zach: I'm trying to fix the remote control.
Emily: Why?
Zach: Because, the batteries are dead.
Emily: Why?
Zach: Because you looked at it.
Emily: No I didn't! You did!
Emily: Can I help? I wanna help.
Zach: No, Emily i can do this by myself.
Emily: (Runs into the kitchen where I am) Mom, Zach want let me have the control!

I'm sipping my coffee and have just popped myself a pop tart into the toaster.

Emily: I want some pop tarts.
Mom: You want eat them.
Emily: Yes I will. You'll see.
Mom: How about some hash browns or some cereal?
Emily: Nooo, I want some pop tarts.
Mom: Ok, but you BETTER eat them. At least 1 out of the pack anyway.
Emily: I will. (She opens the pack of pop tarts)

Enter Zach into the kitchen as Emily takes her pack of pop tarts and heads into the family room.

Zach: Mom these batteries are dead also.
Mom: Where did you find those batteries?
Zach: I got them from Tim's room.
Enter Emily
Emily: I want my pop tarts heated too.
Mom: Ok. let me have them. (I pop both pop tarts into the toaster)
Mom: Those batteries won't work in the remote control.
Zach: Why not?
Emily: I want to see.
Mom: They aren't the right kind of batteries.
Zach: Yes they are. They both are AA's.
Emily: MOVE I WANT TO SEE.
Mom: See what Emily?
Emily: I want to see my pop tarts.
Zach: I'm sure I have them in correctly
Emily: Moooove Zachary! You are standing in MY SPOT!
Zach: Your spot?
Mom: They won't work Zach. They are a different type of battery.
Zach: What? A different type?
Emily: (Extremely whiney) Mooommy Zachary won't move.
Mom: Just a minute Emily
Emily: BUT I WANT TO SEE MY POP TARTS.
The nurse and Timmy leave the kitchen and Emily follows
Mom: The batteries you just put into the remote are lithum batteries, not alkline.
Zach: Soooo
Mom: They won't work. (We have a brief science lesson on the different types of batteries.)
Zach runs upstairs to hunt for more batteries that will work in the remote control
Mom: (Yells) Emily your pop tarts are ready.
Emily: (comes running back into the kitchen) I don't want them.
Mom: Be careful they are hot.
Emily: I don't want them.
Mom: You promised that you would eat at least 1.
Emily: I changed my mind. I'm not hungry now.
Mom: Would you like some milk or juice to drink with your pop tarts?
Emily: I didn't see them, so I don't want them.
Mom: I'll place them here, so when you are ready to eat them you can come and get them.
Emily runs back into Timmy's room. It wasn't that she didn't want them or that she had changed her mind. She was afraid that she was going to miss out on something fun going on in Timmy's room.
Zach: Emily if you don't eat your pop tarts, I will.
Emily: Ok
Emily comes immediately running back into the family room and hops into the rocking chair. Zach has taken Emily's pop tarts to the family room and is sits down to watching TV.
Emily: I want to watch TV.
Zach: You were in Timmy's room.
Emily: But I was here first!
Zach: No you weren't, you left.
Emily: Mommy Zach want let me watch TV. I want my pop tarts.
Zach: You said that I could have them.
Mom: Zach, give Emily 1 of the pop tarts and I or you can fix you another pack.
Zach: Here Emily (Offers Emily 1 of the pop tarts)
Emily: I don't want it cause you touched it!
Mom: Zach, go ahead and eat both pop tarts. She doesn't really want them.

If it wasn't for this face and his contageous laughter, I would be in a psych ward somewhere! This has been a morning test of the PNS (Parent Nervous System). In the event of an actual emergency or nervous breakdown, your adrenal system would be sure to function properly. This has only been a test.

8 Years ago on 9/11/2001

Eight years ago on 9/11/01, it was a beautiful, clear morning. The temperature was very comfortable, in the mid 60's with an expected high temperature in the low to mid 80's. A peaceful morning, like this morning.

I had gotten up, made my then 5 year old breakfast and walked him to meet the school bus. By 7:40am Zach was on his way to school for his 3rd week of Kindergarten. Being the morning was so pleasant, I decided to take a walk to the pharmacy to pick up my prescriptions, but first I had some things to do around the house. I washed up the breakfast dishes, started a load of laundry and just tidied up the rest of the house a bit, picking up and putting things in their proper place.

At about 8:45am Floyd and I left home to walk the 15 minutes or so to the pharmacy. While we were in the pharmacy, the DJ came on the radio, which was being broadcast throughout the small pharmacy and announced that a plane had crashed into the World Trade Center. Having grown up listening to this same DJ day after day for over 15 years, I knew that he had a sick sense of humor sometimes, so my initial thought was "Yeah Right! What a sick joke guy." Not long after the DJ made the announcement all of the phones in the pharmacy started to ring. I remember over hearing the cashier asking the person whom she was speaking with on the phone to please bring over her 13in. TV, so that they (all of the employees at the pharmacy) could see and keep up with the news reports. After paying for my prescriptions, Floyd and I rushed home. We arrived home just in time to see the replay of the 2nd WTC tower being crashed into.
Even after seeing the news reports, with the replays of the planes crashing into the WTC's, I was in shock and disbelief. Why was this happening? How could something so tragic and horrific happen in our Country? A Country of Opportunity, Dreams come true and Freedom? Who would be so selfish and have such ill regard for human life and be so uncaring to do something like this? I felt sick at my stomach. My heart ached for ALL of those who so innociently lost their lives. And for the families who lost their loved one, who will have to live each passing day with such horrific memories. And for the friendships which had been shattered through death by such tragedy. With the magnitude of the destruction, my mind wasn't able to forsee the out pouring of generousity that was to come from strangers throughout the entire country, putting their differences aside while helping to rebuild and mend so many broken hearts.


My thoughts and prayers go out to all of those who lost their lives 8 years ago, to the families and friends who lost that special friend or family member and to ALL of the HEROES of 9/11/01! May God Bless you all!

What were you doing on September 11, 2001?

Official Start of School

Unfortunately I didn't get a picture this morning of Emily climbing aboard the "Big Girl" school bus. I had a question for the bus driver and Emily was soooo excited that she just pushed pass me and climbed on the bus. This will be Emily's first full week of Pre-K. Last week she only attended 1 day at "Big Girl" school. Our school district has what is called staggered enrollment, where only a few Pre-K and Kindergarten children attend school each day during the first week of school. Mrs. Maxey sends home a daily report and today's report states that Emily had a GREAT DAY! Emily says that her favorite part of the day was going outside to play on the playground.

Here are a few pictures that Mrs Maxey took on Sept. 2nd. and today, of the children learning while at play together. Sorry the pictures aren't very clear. The teacher uploaded them to a computer and printed them out for all of the parents.

First Day Of Pre-K

Our baby is no longer a baby. She is now a big girl. Emily started her 1st day of Pre-K yesterday. She is so excited. Emily has been attending ChildCare Network for the past 1 1/2 years. ChildCare Network is a preschool, but is run more like a daycare. The children who are enrolled are from 6 weeks to 12 years of age. Emily is looking so forward to being able to go to what she calls "Big Girl School." All of the children at "Big Girl School" will be 4-5 years. I'm not sure which Emily is looking forward to the most, the atmosphere of the "Big Girl School" or being able to ride the "Big Girl School Bus?" We had a hard time deciding whether we should leave Emily at ChildCare Network for Pre-K or switch her to our public school systems Pre-K program. After much thought and consideration, we decided that Emily would benefit more from our local public school systems Pre-K academic program. Timmy attended the same Pre-K program last year. Aside from Timmy's special Education class, we were very impressed by the other teachers and staff members at the Pre-K Center. Hopefully Emily's experience will surpass her brothers. More picture of the 1st. day of riding the "Big Girl Bus" to come soon.

This is Emily and her Pre-K teacher, Mrs. Maxey. The teacher assistance is Mrs. Rice. Notice the way Mrs. Maxey got down to Emily's level when speaking to her? I liked this. I'm sure that this gesture made Emily feel more at ease and not so intimidated.

Hand washing to keep the germs away. Being that there is the scare of the H1N1 flu, this too is a BIG plus.

Princess Silliness. I think this was her way of telling me to go away! Besides, the teacher had guided her to one of her all time favorite activities, coloring.

HAPPY 24th BIRTHDAY Linnie The Pooh (Gwendolynn)!!!!! I bet you thought that MaMa forgot? Not a chance girlie. You kept me in agony for 18hrs 14mins 24 years ago, on Labor Day. And you haven't stopped a day since. But I still Love Ya!

Wordless Wednesday

Cool Sunshades Huh?

They left me sitting here all alone! What a big boy I am!

Pretty, Pretty Princess!

Giddy Up!

A Nurse and a Friend

Kids

Why is it that when kids do something cute there isn't a video camera anywhere around? Timmy's Kindergarten class was playing an adapted versoin of CandyLand today at school. Timmy was the one in charge of the switch which was used to indicate who's turn it was. Each time Timmy hit the switch a different students name would be announced. Well during game play the teacher and the other adults in the classroom got distracted by something. My 5 year old child, whom has a brain malformaton, whom some people say that there is ABSOLUTELY no way he is able to reason, had figured out the order of the names that were being announced with each press of the switch, kept pressing the switch until with the next ress of the switch would be his turn. Timmy's teacher announced that the game play could began once again. Mind you none of the adults noticed that Timmy had set the switch so that the next turn would be his. The teacher expecting the turn to be a different students was ready to help the other student count off their turn. Timmy presses the switch. The switch announces "his' name and Timmy throws his arms into the air, like YAY it's my turn again already! And starts laughing hysterically! Timmy's teacher was so confused, but yet shocked that he had figured out the turn order that her excitement got the best of her. She forgot to scold him for cheating. Yet another milestone met. Typical game playing behavior from a 5 year old, cheating.

We finally made our decision as to which Pre-K center to send Emily to. We have decided to remove her from Childcare Network, which is part of the More At 4 Pre-K Program, as well as a daycare for children from 6 weeks of age up to 12 years. Childcare Network is like a satellite center when the Public School Centers run out of room. We had Emily transferreed to J.C. Roe, one of the Public School More At 4 Pre-K Centers. I feel that Emily will have a more structured learning enviroment at J.C. Roe compared to Childcare Network. Emily is SOOOO excited to be going to a "Big Girl" school. And being able to ride a "Big Girl" school bus! We took both Emily and Timmy to Wal-Mart tonight to buy them a new backpack. Timmy chose a UNC backpack. And Emily chose a purple Tinker Bell backpack. We are still awaiting for Emily's teacher to contact us. Emily will attend J.C. Roe one day next week. The Pre-K Program does staggered enrollment, where only a set number of children attend school the first few day. Her full week will begin on Sept. 8th. With Emily attending J.C. Roe we will know exactly which days she will be out of school. She will have transportation to and from school each school day. And if by some chance she misses the bus, we only live a 15 minute walk to the school. I'll post first day of Pre-K pictures soon.

10 Things About Me

I have seen this type of post on a lot of other blogs. So I thought Why Not add something like this to our blog? This way those who read our blog will have a better picture of who I am. So here goes....

1. I LOVE to read. I'm a bookworm. I'll read almost anything. My favorite aurthor's are Stephen King and Dean Koontz. I also like to read anything having to do with U.S History, National Geographics, Medical or Science. Ok, so maybe bookworm isn't the correct word, Nerd may fit better.

2. I like to draw and color. A box of the 8 standard Crayola Crayons isn't enough for me. I have to have the biggest box of crayons. Before coloring I have to organize the crayon box into same color groups. (Ie all of the blues in a group, greens in a group etc.)

3. I'm very creative. I'm always coming up with different ways to adapt Timmy's toys to make them more sensory appealing for him.

4. My zodiac sign is Aquarius, the water barer. I love being in water, swimming or just relaxing. My hubby tells me I should have been a mermaid. Oh how I wish I could, but I don't have the body to go along with the whole mermaid idea. Oh well.

5. I like to take long, quiet, peaceful walks, rather it be along the beach or in a park.

6. I'm the mom to 7, yes, SEVEN children. Six living and one precious ^Angel^ in heaven. I have 3 girls. Ages 24, 22, and 4 years. 4 boys. Ages 18, 13, 5 1/2, and our ^Angel^ who would have been 2 1/2 years.

7. My favorite foods are chicken and fish. Yes, I'm a woman who likes chocolate, but it isn't my favorite. It use to be. Maybe old age hos something to do with the lack of interest in chocolate? Or maybe I've gotten wiser with old age and now realize that the chocolate is sticking around in places that I don't want it to?

8. I enjoy going to Comedy Clubs. No favorite comedian though. As long as the person is funny they have my vote.

9. I enjoy visiting museums of all types. But I have to say art museums are my favorite.

10. I scared to death of insects, bugs, snakes, frogs, lizards and anything in the rat family. I guess that narrows down the choices for pets for the kids to only dogs and cats!

One Small Pearl

The odds of finding one small pearl in an oyster is 1 in 12,000. The odds of finding the rare purple pearl in a Quahog clam are 1 in 100,000. But if you happen to be lucky enough to find one of these pearls, you are so excited. You start planning what you will do with the pearl. Give it away to a special friend or family member, keep it and have it set in a ring or necklace or maybe sell it and use the money to pay off some bills, buy yourself something nice or save the money for a later date. You take the pearl to a jeweler to have it appraised. When the jeweler tells you that the pearl isn't worth very much, you are saddened. All of your excitement and dreams have suddenly been shattered. You quickly get over your disappointment and go on with you life as it was before you found the small pearl.

Like finding the small pearl, there are circumstances which occur in our lives which we can just put behind us and move on. There are other situations in our lives from which we learn from our mistakes and try hard not to repeat the same mistakes twice. And there are still other circumstances that occur in our lives, if given a chance we would choose not to change one single thing.

Being the mom of a child with complex special needs, is one of those situations in my life in which I wouold not change a thing, if given the opportunity to do so. I feel so blessed and honored to have been chosen to be Timmy's mom. Timmy has taught me so many of life's lessons in his 5 years with us. Life lessons that all humans should learn and that by doing so would make the world a much better place for us all.

Timmy has taught me the true meaning of Unconditional love. Without one spoken word or physical contact, with just a smile and a giggle, Timmy is able to tell us just how much he appreciates the love and care we give him. And he is able to tell us just how much he loves and adores us. Upon entering his room the first thing in the morning and speaking to Timmy. He gives us this heart melting smile and a giggle that makes us forget "why" we are feeling so depressed and that makes us forget our complaints about the world. For a few precious moments, we cuddle. It is just parent and child exchanging of feelings, thoughts, dreams and unconditional love, without a spoken word, only through smiles, giggles and body language.

He has taught me patience. With a set routine, hard work, patience, and loving guidance, that once the smallest of milestones are reached, the joy, excitement and elation are far more appreciated, than those moments when a "typical" child reaches the same milestones.

He has taught me that it is ok to cry when faced with adversity as long as you don't linger too long in self pity. To seek out help and receive help when offered. To find the strength within myself to stnad up to the ignorance of others in this world. To have the courage to educate those people who are ignorant, not to accept their ignorance toward the disabled as the "norm" of people in this world. My belief is; Through education, we can change the world one person at a time.

He has taught me bravery. To be strong, to stand up and fight for what I believe in and for what I want. Not to accept "NO" as an answer. That if one door shuts another door will open. Just because a hundred doctors may feel that they can't offer you any medical help. This is a large world and there is at least one doctor who will be willing to open his/her heart to help. Be willing to seek and explore ALL possibilities, don't be afraid to ask questions and ask the same questions more than once until you are satisfied with the answers. And don't be afraid to ask for guidance and help in seeking out info, services, or medical treatment.

He has taught me that it is ok to dream, as long as I don't get caught up in the "what ifs?" and "why me?" of life. That in life it is no longer what "I" want, but what is best for "us." That as a mom I most of the time have to settle for second best, so that Timmy can have "the best" of thing in life. I'm thankful for Timmy's happiness and health and no longer focus on the things that Timmy "can't" do, but rather on the things that we have been blessed with that Timmy "can" do. I have learned to open my eyes, ears and heart to others, offering help and support. I have also learned that not everyday will be bitter sweet. That there WILL be days that our lives are in total chaos and WILL be turned upside down by disappointment. But the best that we can do is not to get caught up in the self pity. Rather focus on tomorrow and create a game plan with will help to overcome the disappointment and solve the issue(s) at hand.

He has taught me to live for the moment. To put the daily stresses of life behind me. To be thankful for what I have and not to spend time dwelling or wishing for those thing that I don't have. Spend time together creating memories, rather than rushing about running errands, cleaning house or paying bills. No one knows how much time we have with our special children, so make the best of each moment like it may be your last.

He has taught me simplicity. Material goods and money aren't what is important. Cuddling, singing silly songs, reading/telling stories, a walk along the beach or in a park taking in the sights and sounds together. Playing simple fun games like Peek-A-Boo or Pat-A-Cake. Laughing and smiling together. Through these simple pleasures we are teaching Timmy and learning so much more about him. The simpliest of pleasures in life money can't buy, but are the ones that all children LOVE the most.

And most importantly Timmy has taught me empathy. That if I listen with my heart I will be able to fully understand his needs and desires, through his body language, smiles, giggles, laughter and vocalizations. By listening with my heart, I will be more aware of, sensitive to, and vicariously experiencing his feelings, thoughts, and experiences without having his feelings, thoughts, and experiences fully communicated via a single spoken word.

I'm not saying that everyday with Timmy is hunky dory or peachy keen. There are days in which I'm stressed to the max, exhausted from lack of sleep, depressed and feel as though I can't go on, and days that I'm angry at myself and the world. But the rewards of being Timmy's mom out weigh the negative days one hundred fold.

Even though Timmy is unable to walk, talk, play, or learn at the same pace as a "typical" child Doesn't change the fact that he is a happy, healthy child with feelings and thoughts of his own. I don't see Timmy as a disabled child, but rather I see Timmy as a child with ABILITIES who is faced with challenges.

All that Timmy has taught me and the joy that he has brought into our lives, ABSOLUTELY NO WAY would I ever consider changing a thing! Timmy is my sunshine on a cloudy day. My cup of coffee in the morning with an extra dose of caffine. His smiles and giggles give me the strength to face the day. My breathe of fresh air, when the day seems unbearable. My ray of hope when I'm feeling down and things aren't going my way. He's my inspiration. He's my HERO!!!!!!

We're Back From NIH

Whew, What A Week!!!! I need a vacation now, most definately! I so wish we had taken the 2 days for ourselves AFTER the week of testing. Because I really could use a soak in a hot tub and a long relaxing swim in pool.....

We spent Saturday sight seeing in D.C. We love to vacation in D.C. because all of the museums are free, the transportation is easily accessable and there is always something fun to do there. I finally got to go tour the Batanical Gardens. I wish I had a green thumb and could grow plants and flowers that beautiful. I love to look at and smell beautiful flowers. I like flowers the best though IF they are not picked. It makes me so sad when something so beautiful dies.

Hubby has laid claim to one of the fur trees outside of the Batanical Gardens as "His" Christmas Tree. Doesn't hurt to dream does it? I have to admit it is a perfectly shaped tree.

We also picked up the kids a little something. We bought Emily an astronaut barbie, Timmy a set of magnetic blocks and Zach a brain teaser puzzle, which my little genius solved within a few minutes of opening the box. I'm still working on the puzzles solution. This isn't surprising, I still haven't figured out the solution to the Rubix Cube yet either.

Our visit to NIH, aside from the stress of all of the testing, was very pleasant. All of the Doctors, nurses, techs who preformed some of the tests, the volunteers and other staff members at NIH were very friendly and helpful. The food was DELICIOUS! We were able to choose from a menu full of a variety of foods, desserts and drinks. Unlike a typical hospital menu, from which you may have 2 main dishes to choose from at each meal. I do have to say though, compared to our previous stay at the Children's Inn in December 2008, the staff and other families are friendly and the place is full of noise and activities. The staff at the Family Lodge aren't as friendly and the Lodge is very dimly lit and quiet, like walking into a funeral home of sorts. The rooms and the rest of the building were clean, so I guess that is what is most important anyway.

We were invited to participate in the WAGR research project being conducted by Dr. Joan Han. Being that all of us have a mutation of the PAX-6 gene, Dr. Han felt that we would make good study candidates. To learn more about WAGR syndrome you can go here http://www.wagr.org/

Our week started out on Monday morning at 7:00am. Upon admission to the Clinical Center, we each had our vital signs taken, height and weight obtained, a visit from Dr. Han, at which time a medical history was given to her. Now let the week long testing begin! Monday was a pretty easy day when it came to testing. We both had completed all of our testing for the day by 3:30pm. Testing for the rest of the week lasted until sometimes as late as 5:30pm.

Here is a list of some of the tests that I had preformed;

*Brain/Orbits MRI

*Heart/Abdominal MRI

*DEXA Scan-This is a type of X-ray, which measures the amount of body fat, muscle, bone and compares the numbers.

*A 3 Ophthalmology visit

*A 4 hour Audiology visit (I definately have no problems hearing!)

*Smell Testing- A Scratch-N-Sniff test, where we had to scratch a square and choose from 1 of 4 choices as to what we thought the smell was.

*Sensory Testing-A test to determine how well our nerves in our hands can detect extreme hot, extreme cold and vibration.
Nerve conduction Test.

*EEG/EMG

*Sleep Study (How anyone sleeps comfortable hooked up to all of those wires is beyond me! I sure as heck couldn't.)

*Glucose Tolerance Test- A test used to screen for Diabetes

*Resting Metabolic Rate Test-A plastic helment was placed over our head and our breath was captured and analyzed.

*Nutrition Consultation

*Neurology Consultation

*NeuroPsychological Evaluation

*EKG

*One day for lunch I had to go into a room by myself where there was a buffet aray set up and eat foods of my choice from what was there until I was full. The foods consisted of sandwich makings (ham, turkey, cheese, peanut butter, jelly, lettuce, tomato, condiments), assortment of chips, assortment of fruits, cookies, candy, chicken nuggets, milk, apple juice and water. Probably a few other foods, but I've forgotten. I typically don't eat breakfast or lunch. So one can guess how my part of the meal buffet aray went.

*I had to drink some special water called "Heavy Water" This water cost $400 for 8oz! Yeah, you read that correctly. The water tasted like I had been sucking on a Band-Aid for hours. Yuck! The purpose of this test was to check something to do with energy.

*I had ALOT and I mean ALOT of blood taken to analyzed for specific tests

*I spent 2 entire days peeing in a gallon jug. That was really fun! Yeah right! The urine was also gathered to be tested for specific tests.

*There were a couple of other times in which I had to drink some very yucky stuff (can't remember what the specific test was, but after drinking the yucky stuff, blood and urine samples were collected for testing.)

*Vital signs, including height and weight were obtained every morning.

If there were anymore tests I can't remember, I was rendered brain dead after the 4 hour Audiology visit.

The results to the tests weren't back upon time for us to be discharged from the Clinical Center. Once Dr. Han receives the test results she will pass them on to us.

We are now in the process of making plans for Timmy's visit to NIH in mid November. Looking forward to the visit/

Hi Ho, Hi Ho Off to NIH We Go

Floyd and I will be leaving in the morning to go to NIH (National Institute of Health), to participate in our portion of the research of WAGR Syndrome (Wilms Tumor-Aniridia-Genitourinary-Retardation). Our flight leaves at 9:30AM. We will be undergoing testing at NiIH from Aug. 10th-14th. We are taking a couple of days to ourselves, before we have to check in at NIH. We desperately need a vacation alone. Just so we can relax and not have to make decisions about Timmy's care. The past couple of months Timmy has had ALOT of surgeries, Doc appointments and hospitalizations. Not to mention our Eye Doc appointments, which have also been out of town. We both feel overwhelmed, exhausted and stressed to the max! So even though our week away we will be poked, prodded, scanned and asked the same questions a million times, we are SOOOO looking forward to our time alone.

Timmy is being left in the best possible care of his Home Health Nurses. We have signed a HIPPA release and left instructions and contact information for us and Timmy's Docs, for the nurses and Timmy's Docs, in case of a medical emergency. By us signing the HIPPA release form, we have given a few of Timmy's nurses the right to speak to Timmy's Docs, seek medical attention if needed and make medical decisions as to any treatment which may be needed. Emily will be staying with MaaMaa and Papa or Aunt Angie and Cousin Tiffany. Zach will be with his dad.

Timmy will participate in his portion of the WAGR syndrome research in mid November. By Flody and I going before Timmy, we will be able to inform the Docs as to which tests Timmy will be able to participate in. This will also give the team a chance to schedule Timmy other appointments, in areas of concern (cardiology).

At the time of the post, Timmy's blood glucose levels have been well under control. The last time that we left Timmy for an extended period of time, his blood glucose levels went wacky. We had to swallow the cost and cut our vacation short by a day and a half. Immediately upon our return home, Timmy's blood glucose levels returned to perfect. Let's see what happend this time! Wanna wager any bets? Just remember Timmy's IS a MaMa's boy!

The One Zillion Dollar Boy

In the 1970's we had the Six Million Dollar Man and the Bionic Woman. Almost 4 decades later we have the Incredible Miracle Zillion Dollar Boy! Isn't he cute???

It has been 2 weeks since Timmy had his trach removed. He is doing TERRIFIC!!!!! He had a decannulation follow up appointment on July 29th, at which time a sleep study was scheduled for Monday Aug. 3rd. Yeah, we were surprised and impressed that they were able to get the sleep study scheduled so fast.

According to the paperwork that we were given for the sleep lab, we were suppose to arrive by 6:30PM. We called and requested a later arrival time, because Timmy doesn't typically go to bed until 9:00PM. Big mistake! And as the saying goes, you learn from your mistakes.....

We arrived at UNC Hospital at a little past 8:00PM. It took Timmy's sleep tech 1 hour BEFORE she came in to hook him up to all of the necessary wires for the sleep study. It takes about an hour to hook someone up to all of the wires and make sure everything is hooked up and working properly. So of course, Timmy fell asleep. So an hour of study time was lost.

Dad asked how Timmy did, but of course the tech "can't" and/or wouldn't say anything except that they were able to get 5-6 hours of study time. DUH! At least 6 hours of study time, whether the patient sleeps or just lays awake is needed BEFORE insurance will pay.

Timmy has an appointment on Aug. 19th with his ENT (Dr. Zdanski) to go over the results of the sleep study. Once the sleep study is scored, it is passed on to someone in Pulmonology for review. So hopefully Pulmonology will have time to have reviewed the study before our visit.

My main concern is that Timmy may be having some apnea episodes. He doesn't drop his oxygen saturations, but if he is sleeping on his back, he does snore. In my opinion, when Timmy is placed on his back to sleep his sleep is restless, compared to that if he is placed on his side, which in my opinion is a much more peaceful sleep. Even though Timmy is hooked up to a pulse/oximeter monitor at night while he sleeps, I find myself going in to check on him several time a night. Once we get the results to the sleep study, IF the study shows that everything is ok, I'll be able to relax and get some much needed rest myself. But until then I'll worry and keep my nightly vigil. Isn't that what a mom is suppose to do?

Protect Your Fur Babies

I'm an animal lover, dogs and cats are my favorite. Growing up I always had a pet dog or cat. I can't tell you how many times I have shared my candy (including chocolate) and food with my fur baby. Unbeknownst to me, I was playing Russian Rullette with their life. Until I read the following article, I never realized just how many foods, plants and medications are harmful to my fur babies.

HAMSTEAD DACHSHUND SAVED FROM ONION OVERDOSE
"People food" can pose fatal risks to families' furry friends
Rommel, a dachsund belonging to the Prince family, had a close call after eating an onion.

By Ben SteelmanBen.Steelman@StarNewsOnline.com
Published: Wednesday, July 29, 2009 at 2:30 p.m.

It was a warm summer weekend, so Scott Prince of Hampstead and his wife invited friends over to their back yard for a barbecue.

"We grilled us some kebabs," Prince said.

A great time was had by all - until one of the kebabs landed on the ground. The Princes' 2 1/2-year-old, 15-pound dachshund, Rommel, rushed in and gobbled down a roasted onion.
Big mistake: In no time, the dog was deathly ill. The Princes had to rush Rommel to the Animal Emergency and Trauma Hospital of Wilmington.

This story ends happily, Rommel made a total recovery. To do so, however, the dog spent several days at the emergency hospital and at Topsail Animal Hospital. Meanwhile, a quick Internet search showed the Princes they were lucky.

Onions are extremely toxic to dogs in any form: raw, cooked, powdered or dehydrated. Onions contain a chemical called thiosulphate which is harmless to people; however, dogs (and cats) lack the ability to digest it. In a dog's body, it can cause red blood cells to rupture, leading to a potentially life-threatening form of anemia. Eating a little pizza with onions, or a bit of onion might not be harmful, since thiosulphate's effects are dose-dependent. Eat enough, however, and the animal might soon show vomiting and diarrhea.

The Princes had no idea that onions were potentially dangerous - and they aren't alone. Many pet owners don't recognize that their kitchens and medicine chests contain dozens of everyday ingredients that might be fatal to cats or dogs.

Consider, for example, sugar-free gum. Many commercial brands of gum, and some candies, contain an artificial sweetener called Xylitol. It's safe for humans, but in dogs, Xylitol can cause a dangerous surge in insulin. Just 3 grams of Xylitol can kill a 65-pound dog, according to the Journal of the American Veterinary Medical Association.

Dr. Meghan Tayloe, a veterinarian with Highsmith Animal Hospital in Wilmington, said a number of clients had brought in dogs with Xylitol poisoning in the past few months. Dogs can be saved if treated in time, but treatments will likely involve an overnight hospitalization and an infusion of intravenous fluids.

Lots of people know that chocolate is bad for dogs and cats; it contains a chemical, theobromine, which can overstimulate a dog's heart or cause an irregular heartbeat. Again, the effects are dose-dependent; generally, a large dog will have to eat more than 8 ounces of semi-sweet chocolate to be affected, but small dogs might die after eating as little as 4 ounces. (Cocoa powder and cooking chocolates are more toxic.)

Not everyone, however, realizes that grapes and raisins are bad for dogs, Tayloe said. The fruit causes kidney failure for reasons that are not clearly understood; however, as little as a single serving of raisins can be dangerous, according to the Animal Poison Control Center.
Macadamia nuts can lead to muscle spasms or paralysis; symptoms have been reported with as few as six kernels, according to veterinary pathologist Dr. Ross McKenzie.

Large quantities of salt can lead to an imbalance in a dog's electrolytes, Dr. Tayloe said.
Fortunately, since icy roads are rarely iced in this area, salt poisoning is not too much of a threat.

Human medicines can also be a threat to your pet. Acetaminaphen, the active ingredient in Tylenol, is especially deadly for cats, Dr. Tayloe said. Vitamins may contribute to iron toxicity in dogs, and some children's vitamins might contain Xylitol.

The ASPCA has created a list of 101 things that could be harmful to your pet dog or cat. Here is a list of the foods and plants that you should make sure your dog or cat avoids eating. A complete list can be obtained from the ASPCA or your local vets office.

HARMFUL FOODS THAT YOUR PET SHOULD AVOID

*Avocados
*Chives
*Chocolate (all forms)
*Coffee (all forms)
*Onions and onion powder
*Garlic
*Grapes
*Raisins
*Macadamia nuts
*Milk
*Alcoholic beverages
*Moldy or spoiled foods
*Salt
*Fatty foods
*Gum, candies or any food sweetened with Xylitol
*Raw/Uncooked Meat, Eggs and Bones
*Tea leaves
*Raw yeast dough

HARMFUL PLANTS THAT YOUR PET SHOULD AVOID

*Aloe
*Amaryllis
*Andromeda Japonica
*Asian Lily
*Asparagus Fern
*Australian Nut
*Autumn Crocus
*Azalea
*Belladonna
*Bird of Paradise
*Bittersweet (American and European)
*Black Locust
*Branching Ivy
*Buckeye
*Buddhist Pine
*Caladium
*Calla Lily
*Castor Bean
*Ceriman
*Clematis
*Cordatum
*Corn Plant
*Cycads
*Cyclamen
*Daffodil
*Daylily
*Devil's Ivy
*Dieffenbachia
*Dumb cane
*Easter Lily
*Elephant Ears
*Emerald Fern
*English Ivy
*Eucalyptus
*Ferns
*Fiddle-leaf Philodendron
*Gold Dust Dracaena
*Florida Beauty
*Foxglove
*Glacier Ivy
*Gladiolas
*Golden Pothos
*Heavenly Bamboo
*Honeysuckle
*Hurricane Plant
*Hyacinth
*Hydrangea
*Iris
*Jerusalem Cherry
*Jimson Weed
*Kalanchoe
*Lantana
*Lilies (all Lilium species)
*Lily of the Valley
*Lupine
*Marble Queen
*Morning Glory
*Mother-in-Law
*Mountain Laurel
*Narcissus
*Needlepoint Ivy
*Nephthysis
*Nightshade
*Oleander
*Panda
*Peach Lily
*Philodendron
*Poison Hemlock
*Precatory Bean (rosary pea)
*Privet
*Red Emerald
*Rhododendron
*Ribbon Plant
*Sago Palm
*Satin Pothos
*Schefflera
*Striped Dracaena
*Sweetheart Ivy
*Tulip
*Water Hemlock
*Wisteria
*Yew

When one of our fur babies get sick we want so much to make them feel better. Sometimes without thinking we give our fur babies human medications to "try" to ease their pain or symptoms. Medications that are safe for humans, these same medications are toxic to dogs and cats.

HARMFUL MEDICATIONS THAT YOUR PET SHOULD AVOID

*Non-steroidal anti-inflammatory medications (eg. Motrin, ibuprofen, aspirin, etc...)
*Acetaminophen (eg. Tylenol)
*Cold and flu medications
*Diet pills
*Antidepressants
*Anti-cancer drugs
*Vitamins
*Tobacco products

Protect your pets like you would your child. Pet proof your home. Keep foods, medications, household cleaners, pest insectisides and other sharp or small objects out of your fur baby's reach. By taking these simple precautions, your fur baby will be a part of your family for many years.

For more http://www.aspca.org/
Animal Poison Control phone number (888) 426-4435

1st. Day Of Kindergarten

Five years ago when I was asked what our plans and expectations were for Timmy when he starts school? At the time I couldn't answer this question. To me, that day was so far into the future I couldn't get my brain to even go there. The first 3 years of Timmy's life he was very sickly and didn't show much improvement developmentally. Thinking about, let alone making plans for Timmy's education wasn't at the top of our priority list.. These past 2 years we have been very blessed. Timmy has been very healthy and has shown tremendous gains developmentally, physically, mentally and cognitively. Now that Timmy has reached this wonderful milestone in his life, I can now answer that question posed so many years ago.

We want the same thing for Timmy that any parent wants for their special needs or typical child. We want Timmy to be able to attend a school in which the school has been adapted and equipped to handle a child with multiple disabilities. We want Timmy to have the opportunity to socialize with other special needs child as well as typical children of his age. We want a school where the staff, principal, teachers, and therapist are understanding, caring and supportive. We want a school in which Timmy's teacher is "willing" to adapt her teaching techniques and strategies to best help Timmy to learn. And a teacher who is willing to listen to, work along with and learn from us, Timmy's parents.

I feel that we have found all of this plus more in Timmy's school this year. Mrs. Vanessa is TERRIFIC!!!! She took a few days out of her summer vacation to attend a Deaf-Blind Conference, so that she could speak with professionals and other parents of Deaf-Blind children. She is reading anything and everything she can get her hands on, so that she can better teach Timmy. She is even considering furthering her education, so that she can gain a better understanding of Deaf-Blindness and ways to teach.

I LOVE Mrs. Vanessa's teaching style. She takes each child individually each day and works with them one-on-one. As a group each child has their own hands-on object to hold and explore as she tells the group about the object or the subject that the object pertains to.

Last year when Timmy attended Pre-K, he came home everyday exhausted. And his 2 favorite words that he used consistantly we MaMa Home. Today, Timmy surprised everyone, by showing us that he is capable of so much when placed into the correct enviroment. He IS the class clown and moderator. Timmy is able to make the unhappiest classmate smile and calm down the loudest with just a giggle. He is liked and loved by all.

I Think We Are Gonna Like It Here....!!!!

First Trip To The Beach

Here are a few pictures of Timmy's 1st. trip to the beach. He LOVED the sounds and the water. But HATED the sand, sea shells and the fact that his diaper got well. LOL.

The fact that Timmy no longer has a trach still hasn't sunk in yet for me. It took me hours after returning home to realize exactly what we had just done. Not just taking Timmy to the beach, but taking Timmy to the beach and only having to bring his jogging stroller, a beach towel and sun screen! Before a trip to the beach wasn't possible, because of the possibility of sand blowing into Timmy's trach or if we were to put him into the water, the possibility of water getting into the trach. I just feel so guilty that we live so close to the beach and Timmy wasn't able to go to enjoy himself. BUT now, WOW we REALLY can go to fun places with Timmy and he also be able to participate!

Before when we would travel anywhere with Timmy we would have to lug along 30 pounds of supplies. (Well, all of the needed things seemed to me to weigh that much!) Now a medium size school backpack can hold all of the needed supplies that we will need, like a change of clothes, diapers, wipes, a can of formula, extension tubing and syringe. Probably 10 pounds if that in weight to have to carry around now. WooHooo!

We have a "NEW" Normal and a "NEW" Timmy, LOOK OUT WORLD HERE WE COME!!!!!!!

Our "NEW" Normal

This message is filled with EXCITMENT as well as sadness....

Look closely at this picture of Timmy.

Do you see anything different in this picture compared to other pictures of him?????

I have waited 5 1/2 looong years to be able to tell the whole world this EXCITING news. It is unfortunate that the Doctors and the other very important people in Timmy's and our lives, that have helped us to reach this point could not be around to see us through to the end. I would like to take a moment to Thank all of those "very special" doctors and individualsstanding by our side and helping us to get to this WONDERFUL point in our lives.

A Special Thank You to my Perinatologist, Dr. Hage and Dr. Wright. Even though from a medical stand point, Timmy's survival was very slim, for them both keeping the Faith and Hope to see us through to my delivery. And for working as a team with my OB/GYN to make sure that I had the best possible care throughout my pregnancy.

A VERY SPECIAL Thank You to Dr. Tawakol. This was Timmy's Neonatologist in the NICU, following Timmy's birth and for the first 4 1/2 months of Timmy's life that he was in the hospital. Thank you fo rbeing there for Timmy and us. For being our rock and support through the good times and the bad. Thank you for believing that Miracles CAN and DO happen. And for believing that Timmy has potential to do or be whatever life has to offer him, despite his complex medical issues.

Thank You to Dr. Hulka. This is the ENT (Ear, Nose, Throat) who placed Timmy's trach. This Doc stepped forward to help when no other Doctors would, to give Timmy a fair chance at life off of a ventilator. I can remember the conversation we had with Dr. Hulka following the trach placement surgery. What Dr. Hulka said brought tears to my eyes and was a true testiment of just how caring he is to his patients. When Dr. Hulka came out to speak with us following the surgery, he sat down in front of us and said "I have read your son's medical history. And his complex medical issues DO NOT bother me. I'm here to help your son in any way possible." Dr. Hulka has a TRUE Heart of Gold! Unfortunately, being Dr. Hulka had went out to start his own Practice, he no longer had access to a large medical hospials in which to care for his more medically complex patients like Timmy. So to get Timmy to where we are today, we had to seek another ENT surgeon.

Thank You to Dr. Kravitz (Pulmonologist) who over saw Timmy's care while he was being seen by Dr. Hulka. And who cared for Timmy during both of his extended hospital stays, due to pneumonia. Being that Timmy's "new" ENT is at a different hospital, we had to take on a different Pulmonologist to oversee Timmy's care.

Thank You to Dr. Ali Chalikoglu (Endocrinologist) for his care, support and management of Timmy's diabetes and other endocrine issues. Where the majority of Endocrinologist we have come in contact with throughout the past 5 1/2 years, Dr. Ali has learned to listen to us (Timmy's parents) in order to manage his diabetes and other endocrine issues successfully. Dr. Ali doesn't try to play the role of "Endocrinologist" Hero!

A BIG Thank You to Dr. Jane (Endocrinologist) for stepping forward and overseeing Timmy's care while Dr. Ali was out of country. And for your support. Your being there for Timmy and us really meant alot!

Thank You to Dr. Muge Chalikoglu (Genetist), for caring, help and support in finding the answers to the cause of Timmy's medical issues. And for being a support partner for your hubby as Timmy's Endocrinologist, so that Timmy's diabetes and other Endocrine issues are better managed.

Thank You to all of the special Home Health Care Nurses who have helped take care of Timmy. But a VERY Special Thank You to Merry, Dottie, Julie, Wendy and Deborah Kelly. Mrs. Kelly cared for Timmy from the day he was released from the hospital and for the first 2 1/2 years. Aunt Julie was also one of the nurses who cared for Timmy while he was in the NICU. She was our rock and support then and still is. Thank You to ALL for your help, care and support. ALL of you are like part of our extended family!

Thank You to Timmy's Physical Therapist, Kathleen. You have brought Timmy further than any of his other therapists. You have listened to us as Timmy's parents as to what we find works best for Timmy and applied that to your therapy techniques and strategies. You have taken the time to learn Timmy's "communication cues" and from this you have been able to develop a good one-on-one relationship with Timmy. You know what makes Timmy "tick," when to push him harder and when to take a slower pace. We hope to keep you as a therapist, so that you will be the one to one day possibly see Timmy take those first steps independantly.

Thank You to Timmy's Pediatricians. It is nice to have Doctors, who realize that the parents know their child better than any Doctors do, are willing to listen to the parents and are capible of putting aside what they learned from a textbook and go out on their own to find the "right" answers to a medical issue. Thank You for caring, your support and providing Timmy with the best possible medical care.

Thank You to Family and Friends for your support and warm thoughts and Prayers. They were greatly appreciated.

Thank You to Timmy's ENT (Dr. Zdanski) and Pulmonologist (Dr. Pittman) for agreeing to accept Timmy as a patient. For your time and medical expertise, which helped us to make it to this wonderful point in our lives. We look forward to many more visits with you both.

Now it is time to have a virtual PARTY! The streamers and balloons are hanging (colors may vary). There is a slice of cake (your favorite kind) for everyone and some ice cream (your favorite flavor). No PARTY would be complete without a Party horn. So here everyone take one. Now on the count of three everyone blow your Party horn. 1.....TIMMY HAS.....2.....HIS TRACH.....3.....OUT.....!!!!! Ok I'll repeat that for those who feel they may have heard it incorrectly......TIMMY HAS HIS TRACH OUT!!!!! Now wipe away those tears and try reading it one more time, just to convince yourself that you DID indeed read it correctly.....TIMMY HAS HIS TRACH OUT!!!!!!!!!

On Tuesday, July 21st was suppose to be Timmy's 1st day of Kindergarten. But instead Timmy was admitted to the PICU at UNC hospital. We arrived at UNC at 1:30PM. This admittance was scheduled by Timmy's ENT (Dr. Zdanski) and his Pulmonologist (Dr. Pittman). After our heart breaking let down last month, when Timmy fail his decannulation, we "FINALLY" were able to convince the airway team (ENT, Pulmonologist, trach care team) to "try' removing Timmy's trach while he was fully awake and not under the influence of general anesthesia. After being admitted to the hospital and hooked up to all kinds of monitors, at 3:30PM Timmy removed his own trach. Timmy spent 3 days in the hospital for observation. It has now been 5 days since Timmy removed his trach under the watchful supervision of the Doctors at UNC. He is doing WONDERFULLY!!!!!!!!! Timmy's oxygen saturation levels are actually better without the trach than they were with the trach! When Timmy breathes, especially at night when he is asleep, I can hear what sounds like obstructive breathing. I'm not a doctor, so I will only be guessing, but it sounds more to me like a tongue obstruction rather than an airway obstruction. It very could well be a combination of both an airway and tongue obstruction. It isn't bad enough in my opinion for the doctor to have to replace Timmy's trach. Timmy is able to keep his oxygen saturation levels up and his heartrate isn't elevated, which would show extreme stress. As long as Timmy is sleeping on his side he doesn't have the loud breathing and seems to sleep more peacefully. The trach stoma has almost completely closed. We are placing a large BAND-AID over the stoma to keep out any debris, until it completely closes.

Timmy has a follow up appointment on Wednesday, July 29th. At which time we will discuss with Dr. Zdanski (ENT) his opinions of trying the use of C-PAP or BI-PAP to help Timmy at night. I'll ekkp everyone updated on our upcoming appointment.

Being that Timmy has only had his trach removed for 5 days now, there is still a slight chance that he could need to have the trach replaced. If this should happen within the next few days, weeks, months to come, we would accept it knowing that it was in Timmy's best interest medically. We would go on with our lives like before the trach was removed, caring for Timmy, loving Timmy unconditionally. We would also know that we have proven our point to the Doctors, that we know Timmy better than any Doctor does. And Timmy would have proven to the Doctors that HE could one day possibly have his trach removed once again, because he did so well this time, when removed under the proper circumstances.

WE ARE SOOOO VERY PROUD OF YOU TIMMY!!!!!!!!! (((Hugs))) and XXX for a job well done!!!!!

"LolliPop" Helps Reveal Shapes To The Blind

Isn't Today's Technology AMAZING!?!

"LolliPop" Helps Reveal Shapes To The Blind

By Ibby Caputo

Washington Post Staff Writer

Tuesday, July 21, 2009

With a device that sends signals to his tongue, Mike Jernigan can discern shapes even though he has lost both of his eyes. (By Gene J. Puskar --

After Marine Cpl. Mike Jernigan was blinded by a roadside bomb in Iraq, he said, not much was done for him.

"I returned back from Iraq and [Veterans Affairs] gave me a stick. A stick and a tap on the butt and they said, 'Go ahead.' "

Five years later and thanks to the ambitions of a handful of people, Jernigan has more than a walking cane. He has been given a special "lollipop," a device that uses his tongue to stimulate his visual cortex and send sensory information to his brain.

Also called the intra-oral device, or IOD, the lollipop is an inch-square grid with 625 small round metal pieces. It is connected by a wire to a small camera mounted on a pair of sunglasses and to a hand-held controller about the size of a BlackBerry. The camera sends an image to the lollipop, which transmits a low-voltage pulse to Jernigan's tongue. With training, Jernigan has learned to translate that pulse into pictures. He can now identify the shapes of what is in front of him, even though both of his eyes have been removed.

"It's kind of like Braille that you use with your fingers," said Amy Nau, an optometrist who is researching the effectiveness of the device at the University of Pittsburgh. "Instead of symbols, it's a picture, and instead of your fingertips, it's your tongue."

The machine is called the BrainPort vision device and is manufactured by Wicab, a biomedical engineering company based in Middleton, Wis. It relies on sensory substitution, the process in which if one sense is damaged, the part of the brain that would normally control that sense can learn to perform another function. In Jernigan's case, the visual cortex is recruited to take on tactile recognition.

"Touch takes over for vision in this case," said Maurice Ptito, a professor of visual science at the University of Montreal's School of Optometry, who has scanned the brains of blind people using the machine. "We notice that they activate the visual cortex, which is the part of the brain that a seeing person would use."

Bob Beckman, the president and chief executive of Wicab, said the BrainPort might be on the market by the end of the year, priced at about $10,000.

Jernigan, 30, who lives with his wife and stepson in McLean, received his BrainPort from Wicab for free as one of more than 100 blind people who have tested the instrument. He communicates with researchers about its benefits and limitations.

"It is designed for stationary tasks," he said. If the camera were to transmit images of a moving scene, there would be "too much information to process at once."

Still, Jernigan uses the BrainPort for everything he can. "When your sink gets clogged up, you got pieces laying down on the floor," he said. "It helps you find your pieces."

Jernigan recently demonstrated the device at the University of Pittsburgh Medical Center. He sat with the lollipop in his mouth wearing camera-equipped Oakley sunglasses as Gale Pollock, the center's executive director, stuck simple white felt shapes on a black felt screen. After she placed each shape in front of him, she asked, "Mike, what do you see?" After a few seconds, Jernigan answered correctly each time. "Horizontal line," he said. "Circle." "Diagonal line pointing that way," showing the line's direction with his arm.

"This device does not give you your sight," Jernigan said. "There is not that picture in your head."

"When you were a child, did anyone ever draw a picture on your back?" Beckman asked during a phone interview. He said receiving information via the BrainPort is similar to perceiving a shape sketched on your skin by a person's finger.

"It's a first step," said Pollock, a retired Army general. "It's very elementary, but for so many generations the visually impaired and blind have been told, 'I'm sorry, there is nothing that we can do.' "

Nau said the "vision" produced is very rudimentary. "Blocks, shapes -- it's black and white," she said. "There is no stereo vision," or depth perception.
Beckman said the company's mission is not to re-create vision but to provide information. "I think we are in the infancy of this technology," he said.

Paul Bach-y-Rita, the late founder of Wicab, discovered in the late 1990s that the tongue was the ideal place to provide information through tactile stimulation, Beckman said. "There is a high level of nerve endings in the tongue, similar to a finger," he said. "And the tongue is constantly moist, so there is constant electric conductivity."

Beckman said a finger would require 10 times more electric stimulation than the tongue does to produce the same results in the visual cortex.

There are no known risks associated with the BrainPort, according to Nau, though some patients have reported a tingling sensation on their tongues after using the device.

Jernigan said the electric stimulation on his tongue is mild. "You ever stick a nine-volt battery on your tongue?" Jernigan asked during a phone interview. "It feels like that, but less. It's not as intense as that."

Jernigan said he uses the controller to tweak the strength of the stimulation. "You can make it more powerful if you'd like," he said.

Jernigan, who is studying government affairs at Georgetown University but will be moving to St. Petersburg next month to attend the University of South Florida, said the BrainPort allows him a better life.

"For five years I have stared at a blank, black screen," he said. "People are thinking outside of the box, and by doing so, it allows someone like me to have the hope of the possibility that I might see again."

No Pity Rarty Please

I have been putting off writing a post in response to some comments that we have received over the past 5 years, when strangers first meet Timmy. There was an incident that happened yesterday that has driven me to go ahead and write.

Family members whom I have not seen in over 20 years, saw Timmy for the first time yesterday. Their first response to him was "Oh poor Timmy! He's so pitiful! I just want to cry..." What's "poor" or "pitiful" about him? Does he really strike you as a child that you should feel sorry for? Do you think that he should be "pitied" because he is different? Because he can't function physically and mentally like others? Before coming to the conclusion that my son deserves to have your sympathy, I ask that you get to know him. Then let me ask YOU, Do you see a “poor” or "pitiful" child when you look at Timmy?

When I look at Timmy, I see NOTHING "poor" or "pitiful" about him. I see a child who is HAPPY all the time. I see a little boy who knows that he is the center of his parent's world. I see a child who plays, laughs, loves and cries. I see a child who has distinct likes and dislikes. I see a little boy who likes to play with other children. I see a little boy who likes to play rough, like other children his age. I see a child who is eager and willing to try new experiences. I see a little boy who loves to be the center of attention when in a group. I see a child who is able to express his needs and wants, without uttering a single word.

Just because Timmy can't stand alone, can't walk independantly, can't talk, can't see and can't hear the world around him. Does this alone mean that he is less of a Human Being, who deserves to be pitied??? Because far above and beyond, he is a HUMAN BEING. A person who has feelings, feelings of joy and sadness, anxiety and pain, fear and love for others. And a "real" living person who needs understanding, love, and the opportunity to interact with other people.

Dispite Timmy's differences and limitations, he is what any parent "wants" in a child, for their child to be happy and healthy. Timmy is happy, he is healthy. Timmy likes to play with toys. Some of his toys may have to be adapted or more developmentally age approperate, but still Timmy CAN and DOES play with toys. There are times like any other child, Timmy will get sick. But we don't treat his illnesses any differently than any other parent would treat their child's illnesses. We take Timmy to the doctor. We give Timmy mediations to help make him feel better. And we nurture him through his illness until he is better.

Please don't pitty my son. Please don't assume that any child or an adult who has special needs deserves to be pitied. Open your eyes. Open your heart. Look at the individual for whom they "really" are. You will soon discover that with every breath they take they are saying to you; It is ok to be different. It is ok that I have limitations. I am happy! I am ME!

What else in life are we "really" seeking for our children and for ourselves? Happiness. The reason we do the things that we do in our lives is, because they make us happy. That is why we take walks along the beach at sunset. That is why we play tag with our children. That is why we eat chocolate or drink coffee. That is why we go for a swim or get a nice massage. WHY??? Because all of these things make us happy.

Now tell me does this look like a "poor" or "pitiful" child???

A Road To Hope For All Diabetics

God Doesn't Make Mistakes

These 2 videos speak for themselves.

Happy Birthday Emily!

A Birthday Party Fit For A Princess

What Makes Emily OUR Princess????

E= Eager to Learn new things.
M= Mild Tempered, Presevering, Patient
I= Inquisitive, Imaginative, Sneaky,
L= Loving, Caring, Gentle,
Y= Youthful, Has a sixth sense to know when her "special needs" brother is getting sick, before he exhibits any symptoms.

G= Good Natured, Easily pleased, Friendly, Good Hearted
A= Artistic, Athletic, A Drama Queen
E= Energetic, empathetic,
T= Tomboy, Lionhearted, Smart
H= Helpful, Happy, Good Humored

Some of Emily's Likes....

Emily likes looking at books, Listening & Dancing to music, painting/drawing, playing with Play-Doh, Pretending to be a Ballerina, Digging in the sand, Swimming.

Favorite Cartoons...
Mickey Mouse, Dora, Barney & Thomas & Friends. Favorite Tv. channel is "Noggin"

Her Favorite Animals...
Horses & Cats

Favorite Foods....
Hot dogs, Hash Brown Potatoes, Potato Chips, Meat Loaf, Strawberries, Gravy, Crabs.

Dislikes....
Bread, Corn, Chicken Nuggets, Peas, Cole Slaw. (Not too much that she won't eat.)

Favorite Colors.....
Purple, Pink, Yellow\

My Thoughts....
Emily is a very loving, caring, kind, considerate, little girl. Who Cherishes her "special needs" brother Timmy. Loves to "try" to help care for Timmy's needs by helping to feed him, play silly games with him or push him while he is on the swing, help take his blood glucose, listen to his lungs and YES, she even shows interest in "trying" to change his diapers! She is quick to let someone know when Timmy has an "accident" in his pants and needs to be changed. Off she goes to get diapers and wipes to change him. I just hope that as the years pass, Emily remains as loving, caring and close to her brother as she is now......

Even though the 2 girls who were invited to the birthday party didn't show up, Emily had a GREAT time. The 2 boys (brothers) Conrad and Owen are in Emily's Sunday School Class. They ALL had a FANTASTIC time eating, playing games and of course swimming!

A BIG Thank You to everyone who attended the birthday party!!! Thank you also for the birthday cards and gifts! Enjoy the pictures....

Playing with the Big Boys!

We try to expose Timmy to many different experiences that he may othewise never have the opportunity to experience in his lifetime. Why shouldn't we? Just because Timmy is a special needs child with many complex medical issues doesn't mean that he shouldn't be exposed to and have the same opportunities as other "healthy" children of his same age. What does he gain and learn from these experiences, being he has so many complex medical issues? Timmy's hands are is eyes and ears. By allowing him to have "hands on" experiences, he is more able to understand our description of the things/objects in the world in which he can't see or may have trouble hearing. He is learning not to be afraid of unfamiliar movements, sounds, and smells. He is learning that things in his world have a purpose and can help us all with daily tasks/jobs. He is learning through the different movements (ex. vibration), sound, smell (deisel), and touch (pull of a lever, turn of a knob) how things/objects function. "Typical" children learn in the same way, except they are able to use visual and audiotory stimuli and with "hands on" exploration, they are able to obtain a wealth of information about objects and how the function.

Today, dad decided that it would be a good experience for Timmy to be able to sit on a backhoe while it was running, just to experience the vibration, sounds and smell from the equipment. And to be able to explore the levers and how they are used to operate the backhoe. And of Course, being the boy that Timmy is, he LOVED it! When Dad first cranked up the backhoe, Timmy got very excited! He started saying Wow, Wow and had was full of grins and giggles.

Our camera/camcorder isn't working properly, so unfortunately all I had to take pictures with was my cell phone. The pictures aren't that great. But I was able to capture memories that otherwise may have gone unrecorded.

Adapted Trike

Timmy received a trike as a gift this past Christmas. After 6 months of trying to find a safe way to adapt the trike so that Timmy could ride the trike, we have finally come up with a safe and inexpensive adaptation for the trike. Papa spent the weekend helping to adapt the trike for Timmy.

What we did was to remove the trike's original seat and replace it with an infant/toddler swing. The infant/toddler swing has a 3 point harness, which will help to secure Timmy into the seat and onto the trike safely. Papa had to drill holes in the swing, so that it could be bolted to the trike frame. We screwed velcros to the pedals. The velcros will help to hold Timmy's feet to pedals. For less than a $100, including the price of the trike, Timmy now has a trike in which he can enjoy riding.

It is ashame that companies are allowed to charge such astronomical prices for an adapted "special needs" trike/bike, when parents are able to adapt the trike/bike so cheaply. What is up with the 100% mark up in price, just because the term "special needs" is included in the items name????

A Bill of Rights for Parents of Children with Special Needs

A Bill of Rights for Parents of Children with Special Needs
By Ellen S.
To visit Ellen's blog go to www.lovethatmax.blogspot.com

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

For a printable copy, e-mail LoveThatMax@gmail.com.