I AM POTENTIAL

Brotherly Love To The Max

2012-01-11T14:05:00.000-05:00

When I found out that I was pregnant with Nate I worried about the 6 years age difference, how Nate would accept Timmy with his disabilities and how well the two of them would interact, being that in a short period of time Nate would surpass Timmy's developmental abilities cognitively and physically.

Those worries were quickly pushed aside. At only a couple of months old Nate has delighted and insisted on spending time with Timmy each morning while Timmy is getting ready to face the day. If for some reason, like Timmy has a Doctor appointment out of town, and Nate is unable to see or spend time with Timmy in the morning it's like Nate's world has come crashing down onto him. And his day has been totally turned upside down until Timmy graces Nate with his presence.

I believe that Nate has early on realized Timmy's limitations and Nate has adapted his interests and interactions with Timmy to Timmy's level. Nate really enjoys just sitting with Timmy and listening to music or having books read. One of Timmy's current interest has to do anything related to Pirates. So Nate has also taken up this same interest and enjoys pretend play of Pirates with Timmy.

There has also been times when Nate has taken the role of Brotherly Love to the Max. One evening after Timmy's Home Nurse had finished brushing Timmy's teeth, with Nate's supervision, she left the room to go clean Timmy's toothbrush. Upon her returning to the room she found Nate had crawled onto Timmy's lap and was licking the excess toothpaste from Timmy's teeth.

It warms my heart to know that Timmy's siblings have shown a great deal of interest in Timmy's day to day care. And Nate is no exception. At an early age we have taken the time to show and allow the siblings to help with Timmy's daily care where approperate. One thing that we allow the siblings to start helping with is supplimental G-tube feedings. We even explain that the G-tube needs to sometime be cleaned.

Well, on our most recent train trip to Chicago for Christmas Nate took this daily task to an extreme. I was gathering up the kids things for their nightly bath when I heard Nate sucking on something. My first thought was Oh Boy what have you picked up off of the floor and put in your mouth now? When I looked up what did I see? Nate was "cleaning" Timmy's G-tube! Yeah you got it. Nate had pulled out Timmy's G-tube and was fiercely sucking on the balloon! Just the sight was gross, funny and shocking all at the same time that I didn't know which reaction to display first. Of course I quickly regained myself and took the G-tube from Nate, cleaned it and replaced it. Being thankful that the force of Nate removing the G-tube with the balloon still inflated that their was no damage done.

I can only imagine what the future holds with the funny and not so funny antics that Nate has in store for us......

Christmas Trip To Chicago Videos And Pictures

2012-01-07T17:26:00.035-05:00

Sunday's School Podcast - December 2011

2011-12-31T11:57:00.000-05:00

Yeah I realize that this video is being posted early. Being that tomorrow is New Years Day and later this afternoon we will be departing Grandma's and heading home, I wanted to get the video posted before the New Year begins.

I hope that everyone has a Fun and Safe New Years Eve celebration......

Enjoy viewing all of the happenings in Timmy's class for the month of December.....

Merry Christmas 2011

2011-12-25T06:33:00.002-05:00

Merry Christmas!

This year we are celebrating our Christmas with Grandma in Chicago! We arrived in Chicago on December 21st. via Amtrek. We spent 4 wonderfully exciting days visiting some of the museums, going to Winter Wonderland sponsored by Bank of America and window shopping.

I'll post more pictures and our Christmas video from home later.

Have a Happy Holiday Everyone and stay safe!

Sunday's School Podcast - November 2011

2011-11-27T04:27:00.001-05:00

Kindergarten Awareness 2011

2011-11-06T03:43:00.001-05:00

Timmy's 8th Birthday Party

2011-11-03T17:28:00.003-04:00

It's hard to believe that Timmy is EIGHT!!! We had his birthday party at school again this year so that all of his friends could attend. The party theme this year was "Pirates." Even the cake had pirate ships and dragons on it! We brought in Timmy's sailboat swing, a big Giga ball This is a huge ball in which kids/adults can get into and roll around. And a treasure chest pinata, filled with chocolate gold coins and skittles.. All of the kids including the adult kids had sooo much fun. They all found the Giga ball to be the most fun!

I believe this was Timmy's most favorite of all of his birthday parties. Why do I say this? Because Timmy actually ate a entire piece of birthday cake! Yes, it was a small piece. But in past years he only would accept a couple of bites before he had had enough.

Enjoy the slideshow of his birthday party pictures!

Sunday's School Podcast - October 2011

2011-10-30T01:50:00.001-04:00

Sunday's School Podcast - September 2011

2011-09-25T01:19:00.001-04:00

Sunday School Podcast - Aug. 2011 Week 1

2011-08-07T01:09:00.001-04:00

Sunday's School Podcast - First Week of School

2011-07-31T04:30:00.001-04:00

WooHoo, School Is Back In Session! Below is the very first Podcast of this school year. With the dreaded school budget cuts, which lead to the transfer of one of the Teacher's Assistant in Timmy's classroom, being placed in another school. The two Special Education classes have had to combined their webpages. With one person less to help in the classrooms, taking pictures for a weekly poddcast is less of a priority this year. But hopefully once the chaios of the start of school smooths itself out. Time will be found to take pictures for if not weekly, maybe bi-weekly podcasts.

Enjoy!

Two spoken words....

2011-07-26T23:10:00.000-04:00

After a semi-sleepless night, being up with Nate who is teething and running a temp of 102+- from a possible ear infection. A long, stressful day from a trip out of town to Duke Eye Center for an eye appointment for myself. There couldn't have been a better end to my day. Or a better way to ease the stress, but the two spoken words from Timmy said so clearly and with excitement in his voice upon our walking into the house, "Home, MaMa!" This alone was enough to ease all of my stress and bring a big smile to my face. And prepare my mind and body to deal with Emily's hyperactivity long enough to get us through her homework for the day.

Happy 1st Birthday Nathaniel!!!

2011-07-23T22:08:00.005-04:00

HAPPY 1st BIRTHDAY!!!

It's hard to believe that a year has come and gone. We have had a lot of laughter. And shared a few tears. You have come a long way physically, cognitively, and socially.

*You have learned how to play Pat-A-Cake and Peek-A-BOO.
*You love music and dancing.
*Your two favorite games are placing objects into a container and taking them out. And crawling after a ball that you roll across the floor.
*Your favorite foods are steak, baked potato with sour cream, applesauce, cheese sandwiches, squash, carrots and ANYTHING that brother Timmy is eating or anyone else for that matter.
*You absolutely LOVE bath time and swimming in the pool. But I have to say, you are the first and only baby that I know who insists on taking their washcloth into the swimming pool.
*You can pull yourself to stand and stand without holding onto something for a short period of time.
*You have learned how to climb onto the furniture and find climbing onto and getting down from a fun game.
*At your WIC appointment on Friday (July 22nd) you weighed 20lbs 1oz and you were 28 1/2in. tall.

Happy 6th Birthday Emily!!!

2011-07-18T21:42:00.002-04:00

HAPPY 6th BIRTHDAY!!!

Sunday - School Podcast - (Emily)

2011-07-17T01:36:00.001-04:00

The title of this weeks podcast is "Rabbit Guy and Chicks."

Enjoy...!

Sunday - School Podcast - (Emily)

2011-07-10T01:31:00.001-04:00

This weeks Podcast is (Penguin Polito).

2011 Chicago Trip

2011-07-07T19:29:00.003-04:00

From June 29th - July 7th, Floyd and I went to Chicago alone for a little Rest and Relaxation. Floyd grew up in the Chicago area. So he took me around to see some of the sites. We toured Navy Pier, Saw the stained glass museum at Navy Pier, Saw buckinham Fountain, walked down to the lake front for awhile and did some shopping for the kids.

It was nice for a chnge not to have to stress over the daily tasks of the home, kids, Doc appointments. We had sooo much fun we have started to plan our next get away alone.

Sunday - School Podcast - (Emily)

2011-07-03T01:27:00.001-04:00

This is the 2nd week of Emily's class podcasts. This weeks podcast is titled "Best Part Of Me."

Enjoy....!

24th Annual Family Teacher Deaf-Blind Conference

2011-06-27T19:09:00.001-04:00

We attended the 24th Annual Family - Teacher Deaf-Blind Conference in Greensboro N.C. June 24th - 27th. While Floyd and I were attending the conference meetings, Timmy on the other hand had fun, Fun, FUN with his old and new friends.

Here are a few pictures that I took at the conference. More are to come later. We should be receiving a CD of pictures that were taken during the day of all of the children enjoying the daily activities.

Sunday - School Podcast - (Emily)

2011-06-26T01:18:00.001-04:00

Last week while downloading Timmy's final podcast of the year, I realized that Emily's teacher had posted 4 short podcasts of her class. So for the next 4 weeks, I will be adding the podcasts from Emily's class.

This weeks podcast is "Snowkids On The Farm" (Hence Mrs. Snow was Emily's teacher's name.)

Enjoy...!

You're 11 Months Old Today!

2011-06-23T05:55:00.078-04:00

Yet another month is behind us. Today Nate is 11 months old. It is hard to believe that in just 11 months Nate has grown so big! Your physical and cognitive development is right on target for your age, which is a blessing, being that Nate has a visual impairment.

Nate loves long car rides. This is a very good thing, being that there are always several out of town appointments a month with specialists for myself, Nate or Timmy.

Nate is a curious and adventurous boy. He loves to explore and has started to climb. If something that he wants is out of his reach, he will come up with creative ways to gain access to whatever it is that he desires.

On ocassion Nate will have Timmy to assist him in gaining access to whatever it is that he desires at the present time.

For brief periods of time, Nate is able to stand with little or no assistance. He has even started using his Chicco Activity Walker to help him walk independantly around the house.

Nate loves to eat. He has completely given up on eating baby foods. He prefers to eat Timmy's homemade puree dishes that Daddy makes special for Timmy. Nate's favorite foods are baked potatoes (white or sweet), cheese sandwiches and any kind of fruit or veggie. He dislikes scrambled eggs and tuna.

Nate enjoys hanging out with his big bro. Nate gets upset in the morning if I or someone else doesn't let him say "hi" to Timmy. And Nate's face lights up with a big smile in the afternoons when Timmy arrives home after school. Like us all, Nate dislikes the fact that Timmy keeps his hands in his mouth. Nate refuses to touch Timmy's drooly hands. So if Timmy has his hands in his mouth when Nate wants to interact with him, Nate will touch Timmy's arm and Timmy will immediately take his hands out of his mouth. Hmmm, maybe, wishful thinking I know, but just maybe Nate will be the cure all of Timmy's hands obsession. Yeah right!

You have the sweetest personality. But yet you are very opinionated. Everything with the world is just grand as long as everyone in your life stay on tract with your strict schedule. You have the cuties smile. And infectious laugh. You love to cuddle and give kisses.

Your favorite play things are balls, drums or any other item which you can hit on, a large stuffed kitty and Fisher-Price Bubble Gum machine, in which a ball is placed into machine and rolls out from the bottom. You also enjoy placing small items into a container and dumping them out.

Aside from spending time with siblings, playing with toys and eating, your all time favorite part of the day, be it nap time or just before bedtime, is to cuddle in Momma's arms and fall sound asleep. This is Momma's favorite time of the say as well. If it wouldn't be selfish of me, I would make a wish that you would never get any older or bigger. That you will stay Momma's baby boy forever. So I will cherish and treasure the gift of watching you grow into a curious, intelligent, energetic, funny, happy, Momma's boy!

Momma LOVES you Natie Cakes!

Sunday - School Podcast - Graduation

2011-06-19T04:31:00.001-04:00

Graduation / Awards Day Celebration 6/2011

2011-06-16T16:56:00.023-04:00

Today was a bitter sweet day for everyone at school. Trepreme, pictured above graduated from 5th grade. His teacher, Mrs. Bishop and the assistant teacher, Mrs. Kristi have been teaching Trepreme since his early days at Easter Seals UCP.

Trepreme has been Timmy's best friend at school for two years. I have enjoyed listening to the stories told by Timmy's nurse's which detailed many days of mischief and trouble making by these two friends.

We all wish Trepreme all the best in the coming year(s). And he will be dearly missed by his teacher and his friends.

Sunday - School Podcast - Birds

2011-06-12T08:52:00.001-04:00

Princess And Pirate Day At School

2011-06-10T21:37:00.002-04:00

Princess or Pirate Dress-Up Day at school....

Doesn't she make a Beautiful Princess?!

Class Friends - Podcast

2011-06-10T15:52:00.001-04:00

Sunday - School Podcast - Fun Day

2011-06-05T04:30:00.002-04:00

Timmy's New Chair

2011-06-04T22:03:00.000-04:00

I have to admit, this is one of the BEST purchases we have made for Timmy. This Fisher-Price Infant-To-Toddler Rocker is perfect for a newborn and a child up to 40lbs. The rocker can be purchased fromToys R Us, Babies R US, and Wal-Mart.com (colors/patterns and prices may vary.) We recently purchased the Rocker for Nate and we paid $38 for it. The Rocker comes with a nice toybar, which isn't depicted in the picture. At 7 years old, Timmy feels that he is too old to play with such baby toys!

Timmy has had this chair for 5 years. This chair has been put to the durability test many times. With Zach and Em using it as Timmy's speed racer by pushing Timmy around the house in the chair. The seat cover has been washed many times over the past 5 years and is just starting to show alot of wear and tear.

This chair is perfect for a special needs baby/child, who has little to no head control and who has high/low muscle tone. The Rocker has two recline positions and a "foot" that can be pulled out to prevent the Rocker from rocking.

I would absolutely recommend this product to everyone!

We have been on the hunt for Timmy a new chair. We have searched most of the adaptibility catalogs, only to be depressed by the prices for a suitable chair for Timmy. So we decided to start looking in our local stores for a chair that we could adapt ourselves if necessary. And the other day while shopping at Rose's Department Store, I found this chair. The only drawback with this chair is that it only has 1 position and it doesn't rock. But it does fold flat for storage and for travelling. And I only paid $25!

Doesn't he look comfy in his new chair??? Easy enough to adapt by adding a boppy pillow under his bottom if necessary or pillows on either side of him to help keep him upright if he should get tired of supporting himself while sitting.

Fun Day At School

2011-06-03T22:20:00.000-04:00

Wow, this school year has flown by! It's hard to believe that this school year is coming to an end. Zach's last day of school is only 4 1/2 days away. And Tim and Em's is 9 1/2 days.

It wasn't until a couple of days ago, when I was looking through some pictures that had been take earlier in the school year, that I realized that Tim will be in 2nd grade, Emily will be in 1st. and Zach will be in the 10th.

Tim and Em's school had Fun Day today. Floyd, Nate and I went to the school to have lunch with the kids and to do a lil socializing. Floyd took a few cute pics of the kids. Floyd just isn't a photographer. I wish he had taken more ics of Em's class enjoying the outdoor activities. Hopefully one of the other parents will upload a few so that I can add them to the blog.

Sunday - School Podcast - Frogs

2011-05-29T03:44:00.002-04:00

Sunday - School Podcast - Ms. Brandy's Last Day

2011-05-01T19:33:00.000-04:00

Grandpa and me

2011-04-25T10:29:00.007-04:00

There isn't anything better than some cuddle time spend with grandparents who spoik me!

Hop-py Easter

2011-04-24T20:05:00.000-04:00

This was Nate's 1st Easter. He had lots of fun playing with the Hide-Em and Find-Em Talking Easter Eggs. He also enjoyed mine and his share of dinner. He had mashed potatoes and cranberry sauce.

Timmy enjoyed his Easter dinner. Floyd pureed Timmy some ham, cabbage and mashed potatoes. Floyd and I even agreed to take a gamble and gave Timmy 1 slice of apple crumb pie for dessert. Being that Timmy is a diabetic, he doesn't often get the luxary of enjoying sweets very often. To err on the safe side, Floyd checked Timmy's blood glucose 2 hours after his meal. Surprise, Surprise! Or maybe not, being Timmy's glucose levels lately have been like a wild roller coaster ride. Ater consuming 70 grams of carbs, he blood glucose was 123! Timmy is one diabetic that NO ONE will ever figure out what makes him tick!

I leave you with some Hop-py Easter cuteness......

9 - Months Old

2011-04-23T00:59:00.186-04:00

To start, I want to apologize for the picture quality. I'm having technical difficulties with my digital camera. So I have had to resort to using the camera on my LG flip phone from Verizon. I've had this phone for 3 years. The camera on the phone isn't much better. Sorry!

It is hard to believe that 3/4 of a year has passed since you were born. Wow, it's AMAZING at just how much you have grown and learned in such a short time.

You now have 4 teeth, Two top front teeth and two front bottom teeth. Now that you have teeth, when someone is eating, especially momma, you insist on having a bite of food from my plate to sample. Even though you may have just eaten, you give me that precious puppy doggie look along with a pitiful little whine that would make anyone want to share their food with you.

You now have a vocabulary of 4 words, Momma, Dada, Baba (bottle) and Nahnah (nite nite). I have had to stop putting you to the breast for feedings, because now that you have teeth, you consider Momma your special chewy toy. It is nice though that we still get to share cuddle time at bedtime, while you take your last bottle feeding of the day. Even though you are feed from a bottle, you are still getting breast milk. I express breast milk for you just before each bottle feeding. I will continue to do so until you turn 1 year old.

You refuse to sit in your bouncy seat. You still enjoy playing with the hanging toy bar. Your favorite place to be is on the floor, not restrained, so that you can GO, GO, GO where ever you desire.

While holding onto furniture you have learned to pull yourself to standing. Now that you are able to stand alone, you find enjoyment in being able to hold onto something and bounce (jump) as long as your heart desires.

You are now fully mobile. No more Army crawling. You crawl on hands and knees. Going ANYWHERE and EVERYWHERE, exploring every nook and cranny of your world.

Shadow play is your new found form of self entertainment. It is fun to watch you play and explore your shadow. It appears to amaze you that even though you can see the shape of your hand and head in shadow, you can't figure out why you can't actually see yourself.

Now that you have gotten older, Timmy isn't just your Big Brother, he has become your Best Friend. Your interest and desire to play with Timmy has grown. You so enjoy crawling over Timmy as though he were your Jungle gym. Timmy is such a trooper to tolerate this type of play from his little brother.

The expressions on your face once you figure out the solution to a problem, discover how something works or accomplish a new task are priceless!

You continue to have the best personality. Your laughter is contageous. Your day is routine oriented. Heaven forbid someone gets off of your set schedule.

You are very inquisitive, loving to explore to figure out how the many things in this world works.

You are a very socialible boy. You haven't met not one stranger so far. Different people interest you. When someone holds you, you are fascinated by a persons face. You stare intently at the person's mouth the entire time that they are speaking.

You are the Love of my life. You bring me so much happiness into my life with each passing day. I never noticed until you came along just how fast a infant grows into a happy, vibrant, inquisitive, active baby. With your arrival, my life is complete. It is with this feeling of completeness, I want to savor every minute of your young childhood. Because with just a blink of an eye it will soon disappear.

Look At What I Can Do

2011-04-04T19:07:00.000-04:00

I was going to save this wonderful milestone development for Nate's 9 month old update. I'm too excited. Just had to share my excitment and amazement with everyone.

Look at me! This is the first time that Nate has sat up for over a few minutes, without arching and falling backwards. I went through Timmy's toy bin and found some of Timmy's "infant" toys that I thought that Nate might enjoy playing with. This and a light - N - sounds musical piano are his two favs.

Nate can pull himself into the sitting position. He is still having some trouble getting into the sitting position while on the floor without anything to help assist him. He can also pull himself to stand. BUT of course, being I wanted him to do so, so that I could get it on camera, he refused. But pulled himself to stand once the camera had been turned off.

It took only 1 week for Nate to go from speed comando crawling to this.....

I'm a bit jealous. Upon Nate and Floyd's return from Grandma's. Nate has been saying DaDa. I'm looking forward to the day he will actually recognize that "I" do exist aside from his DaDa.

It's amazing just how far Nate has come in such a short time with meeting his milestones. Some (not all) kiddos who have visual impairments are developmentally delayed. We are blessed to have such a WONDERFUL Physical Therapist working with Nate and Timmy. THANK YOU Kathleen!!!! With her patience and persistance both of our kids have come a Long way developmentally. And Nate has been able to meet his gross motor milestones thus far right on schedule.

Sunday's School Podcast - Spring Fun

2011-04-03T08:15:00.001-04:00

Timmy isn't in this podcast much. He only attended school 3 days this week. It is nice to be able to sse the other children in his class having fun while learning.

Hop Til You Drop

2011-04-02T21:42:00.000-04:00

Now that Nate is 8 1/2 months old, most days he refuses to take even one short nap. Guess he is too afraid that he might miss something of great importance. So when he does fall asleep, I let him lay. In some cases, like the pictures show, I may be labelled a bad Mommy. But my motto is let sleeping baby's alone. Besides, if he is able to fall asleep in a compromising position, he must have been comfortable .

Isn't he just the sweetest!?!

Hi-Ho, Hi-Ho Off To Grandma's They Go

2011-03-31T21:43:00.000-04:00

The kids are suppose to start their Spring Break on Friday, April 1st. We decided to keep them out of school for 2 days, so that they could go to IL with Floyd to visit Grandma. Timmy hasn't been to visit Grandma, since January 2008. He is so excited. And is looking forward to being able to visit with his cousins once again.

Being that Timmy is a special needs child and requires a great deal of extra items when travelling, food, diapers, diabetic supplies, medications. I always feel as though I'm forgetting to pack something. It isn't until he has been gone from home a few days before this feeling go away.

In the past when we have travelled with Timmy we packed all of the food that he would need for our entire trip. When Floyd took Nate to visit Grandma last month, it was brought to his attention by an Amtrek employee that the chef who prepares the on board meals could prepare all of Timmy's meals. A few days ago, Floyd had a long phone conversation with the Chef . The Chef felt very positive that he would be able to prepare Timmy's meals as he needs them. So Floyd agreed to let him try. Even though this service was put into place, being the well prepared mommy that I am, I went ahead and packed Timmy some food for his trip, just in case. If the Chef does get the consistancy of Timmy's meals correct, travelling with Timmy will be a breeze in the future. Our bags will be a lot lighter.

We travel by Amtrek ALOT. When travelling with Timmy on the airlines, the airport employees haven't been very acommidating or helpful. And getting Timmy through security with all of his necessary medications and supplies has been a NIGHTMARE!

Here are a couple of pictures of Timmy and Nate together today before they left for the train station. Nate LOVES his brother. Well, Timmy LOVES his little brother, especially when he is crying. Timmy thinks that Nate crying is hysterically funny. Maybe he knows that most of the time Nate's tears are crocodile tears. I swear sometimes it seems that these two have their own form of communication. Who knows. And they sure won't tell their secret.

Sunday School Podcast - The Police Station and More

2011-03-27T02:24:00.002-04:00

Timmy's ear tube(s) came out a little over a week ago. What was to follow? Of course, an ear infection in his left ear, his good ear.

After 3 days of being on an antibotic, Timmy spikes a temperature of 102.5 on Thursday Morning. I gave him a dose of Motrin, which brought the temperature down nicely. All day Timmy didn't spike a temperature. He was his smiling, happy, laughing self. In the early evening Timmy spiked another Temperature of 102.7. He was given a dose of Motrin, which brought the temperature down. Timmy showed no other sign of illness. His ear(s) aren't draining and they don't look like they may be inflamed.

Could this spike in temperature be a result of Daddy giving Timmy his 2nd 4mg. dose of Zanaflex, to try to help Timmy get back to sleep, following a middle of the night diaper change? I seem to recall something like this occuring awhile back, but can't remember if it was during an ear infection or if an illness followed the temperature spike.

I have my fingers crossed that the spike in temperature isn't a result of the antibotic masking some underlying horrible illness, which will flare up once the antibotic regiment is complete.

Unfortunately, being Timmy had a temperature he had to miss the field trip on Thursday to the Police Station. There were other awesome pictures of Timmy that were taken earlier in the week.

So enjoy the Podcast.

Wow, You Are 8 Months Old

2011-03-23T04:44:00.137-04:00

Wow, you are 8 months old today! Where has the time gone? This past month was filled with great adventures and lots of development.

You took your very first Amtrek train ride to IL to visit grandma. Whew, we both survived being away from each other for 3 long weeks. While Daddy loaded your stroller and the luggage into the car, you and I spent the time hugging, kissing, laughing together and getting reaquainted. It felt sooo good to have you back in my arms.

You really enjoyed your visit with Grandma and your cousin. While visiting Grandma, daddy gave you Enfamil Soy formula and fed you baby food. You definately missed Mommy's milk. Alomst a week, you refused at eat or drink anything, except Mommy's milk.

Nate 7 months. Cousin Declan 3 months.

Your personality is still flurishing. Along with the happy, loving baby, full of laughter, you are now very demanding and opinionated. Things in your life "have" to go your way and they "must" be done on your schedule, not a seconds delay. If your wants/needs aren't met immediately, you perform a lung capacity test, which sends brother Timmy into hysterical laughter.

Mommy's Muffin Man is no longer a muffin. He has grown into Mommy's Natie Cake-a-roo. Your all time favorite daily activity is jumping/bouncing. There have been days in which I have questioned your genetic makeup. Wondering if it were possibly that some of your ancestors may have been kangaroos.

You are now on the move! You have mastered Comando crawling. If you want something, it takes only seconds for you to get there. Mommy's cell phone is a BIG favorite. There is sometimes a game of Tug-a-War, if I'm holding you and the phone rings. Or if you see the phone in my hand, you come speed crawlong to try to get it from me. I just hope that your interest in cell phones isn't a sign of what is to come. But you do have some of your Daddy's genes. And your Daddy is a talker!

You are playing more and more on your own. Exploring toys. You also rally enjoy being read to. This crinkly book is one of your favorite toys.

You are testing your muscles and exploring just how your body works.. You are starting out small, with trying to pull up to stand. You still absolutely refuse to sit!

You are fascinated with anything that has lights. And your new found interest is a mirror. "Mirror, Mirror In My Hand, Who's The Fairest Little Boy In the Land?" Natie Cake-a-roo, of course!

Your all time favorite place in the entire house is Timmy's room. More accurate, is Timmy's bed. If someone doesn't take you into see Timmy after you have your breakfast in the mornings, you start fussing and won't stop until you see your brother. You repeat this in the evenings. You insist on going into Timmy's room to see him get dressed after his bath. Mrs. Dottie, after Timmy's bedtime routine has been completed, she sometimes reads a book to Timmy and you really enjoy this time together with Timmy.

Since your return home from Grandma's house, your refuse to take a bath in your baby bathtub. You demand to be placed into the Big Boy bathtub. You perfer that you lotion following your bath be slightly heated before applying it to your body. Warming the lotion in our hands just won't do.

I hate that I had to stop our "special" time together. But now that you have teeth, you insisted on using Mommy as a teether. Ouch! Even though our "special" time together is no more. my favorite time of the day is still holding you while you take your last bottle of pumped breast milk before bed. Your sweet baby smell. Your soft quiet breathing as you drift off to sleep. Watching the expressions on your face while you sleep. Your warm body against mine.

I Love you Natie Cake-a-roo!

Tiles For Smiles

2011-03-19T21:51:00.000-04:00

Tiles For Smiles is a project hosted by NHRMC (New Hanover Regional Medical Center) in conjunction with Monteith Construction. Children from the community and their family, who have had extended stays at NHRMC, were invited to NHRMC to paint tiles. The ceiling tiles will be placed throughout the Women's and Children's Hospital, the Pediatric Speciality Clinic and other areas of the hospital in which a child may visit or stay. These tiles are to help make the hospital and clinic more child friendly and not so scary.

March 14th marked Timmy's 7th year discharge anniversary from the NICU after 4 1/2 long months.

This year Timmy's heart wasn't much into painting the ceiling tile. Timmy fell asleep on the way to the hospital, so his nap was interrupted. The event was held in the new Women's and Children's Hospital lobby this year. The room had an echo, which Timmy doesn't like. The echo is worse when children are talking loudly or crying. This upset Timmy so we had to leave early. Emily had fun though. The entertainment this year included The Panther's Cheerleaders, a clown, stories read by Two Sisters Bookery, and dancers from Danzquest. There was also a booth set up for face painting, hair styling and fingernail painting.

The theme throughout the hospital is Ocean scenery. Timmy chose to paint a crab. Look at him. Even though his heart wasn't completely into the painting, he did a GREAT job holding the paint brush, while Merry held his wrist and guided his hand/arm to help him paint.

Emily chose to paint a Dolphin. She did a Wonderful job as well. Emily isn't a creative or artistic child. Coloring and painting are activities, which Emily finds to be too restrictive. She had much rather be outside running and playing, swinging or riding her scooter.

Below are a few pictures of our little Diva after she had her face painted, fingernails painted and glitter sprayed into her hair.

Sunday's - School Podcast - Dr. Seuss Week

2011-03-06T03:33:00.006-05:00

Celebrating Theodor Seuss Geisel's (a.k.a Dr. Seuss) birthday.

Back Where He Belongs

2011-03-05T21:17:00.001-05:00

I'm sooo Happy! My Natie Cake is FINALLY back home! It took almost 2 weeks before any of us stopped looking into the Pack-N-Play, which is in the living room and where Natie Cake spend some of his time. When I would pass by and look into the Pack-N-Play, there were time in which I wished very hard that I could will him to reappear. I so missed his clinginess, his smile and hearing his laughter.

We spent over 10 minutes laughing together while Dad placed their belongings into the trunk of the car.

Now he is safe and sound, back where he belongs. In my arms and safely tucked into his own bed.

SNEETCHES - By Dr. Seuss

2011-03-03T17:23:00.000-05:00

Happy Birthday Dr. Seuss! (a.k.a Theodor Seuss Geisel) Well, actually his birthday was yesterday. Some of the classes at Emily and Timmy's school is having a week long celebration of Dr. Seuss' birthday. This morning I, PaPa and MiMi went to see Emily's Kindergarten class preformance of the story SNEETCHES. It was waaay too cute!

Here are some pictures and a video. Enjoy.

Don't you agree, They are just the CUTEST group of Kindergarteners Ever!

End The "R Word" Day

2011-03-02T16:27:00.000-05:00

I am sure alot of you are already aware that today is "spread the word to end the word" day. Here is the website if you don't already know about this or want to know more and get more involved in the future:
"R Word"

Also in honor of this day, I wanted to share one of the most powerful essays I've read regarding the treatment and rights of people with intellectual disability. The author is Dave Hingsburger and you can find his blog is: Dave Hingsburger

Monday, August 23, 2010.
The People Who 'ARE', By Dave Hingsburger

It's in the press again. I search to find out the context of the word. I see
debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about product that protect from fire. Last I looked there's only ever been
protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so?
The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against those people
with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the
word and the attack it represents is simply a result of the fact that they
do not take the 'people' who wear that label seriously. The concerns of
those with intellectual disabilities have always been diminished and
trivialized. There is a sneaking suspicion that they 'don't understand, poor
dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history. They have been torn from families and cast into institutions. They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state. They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt,
emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those
targeted by geneticists for non-existence, they need fear those who wear
black hats and those who wear white coats.

They are educated only under protest, they are included as a concession
rather than a right, they are neighbours only because petitions failed to
keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship. That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world. That they are a 'community' is questioned even though they have commonality,

they have mutual goals, they have a collective vision of the future. That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

They ask for respect and receive pity. They ask for fair play and are offered charity They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are
trivialized. They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have
survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged.

They are a people recently emancipated, new citizens, who are tentatively discovering their voice. It is a voice not yet heard. It is a voice not yet respected. It is a voice not yet understood. But it is speaking.
And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Sunday's School Podcast - Valentines Week

2011-02-27T06:32:00.001-05:00

7 - Months Old

2011-02-23T21:21:00.043-05:00

What's new this month? Well, you went on your 1st. out of state train trip to visit Grandma in IL. (Pictures to come soon. Hopefully daddy took some.)

Mommy introduced you to solid foods and juice this month. Your favorite foods are Squash, carrots and applesauce. Your least favorite foods are Green Beans and sweet potatoes. You love apple juice. Feeding you is so much fun. Eating is your second favorite activity, jumping/ bouncing is still your ALL time favorite.

You learned how to hold your own bottle. Well, you will hold your own bottle ONLY when it suits you. You prefer someone else to hold the bottle for you, that is soo much easier.

Your personality is still blossoming and you learn something new with each passing day. It is such a joy to watch you exploring the world aroudn you.

It fills my heart with joy to watch you grow. It also saddens me to realize that over a 1/2 a year has passed and that time is flying by. Soon you will no longer be Mommy's baby, but rather Mommy's little boy.

Sunday's School Podcast - Penguins, Superbowl, Groundhog Day

2011-02-20T11:27:00.002-05:00

The Curse

2011-02-18T11:15:00.001-05:00

There are two statements, which should NEVER be thought of voiced in the presence of Timmy. They are, "Good job Timmy! I'm proud of you" and "I have figured you out Timmy." If either of these statements are thought or voiced, Timmy will either refuse to repeat the task that he had accomplished perfectly. Or he will throw you a curve ball.

It was told to me that one of Timmy's teachers (I won't mention any names) made a similar statement to Timmy, "I've got you Timmy." So of course, today he threw us a curve ball.

In the past 7 years, when Timmy has had high blood glucose levels he has NEVER spilled ketones into his urine. His blood glucose levels have been well over 600mg/dl and NO ketones.

Even though Timmy has never spilled ketones, Timmy's Endocrinologist insists that when Timmy has a high blood glucose level that we test Timmy's ketones.

Timmy wears an insulin pump. Last night was a scheduled site change for his insulin pump infusion set. At bedtime Timmy's blood glucose level was slightly elevated (264). It was time to play the guessing game with Timmy's body. Is Timmy's glucose level elevated because we have a bad infusion set site? Is the insulin bad? Or is this just Timmy's body saying "Nah, Nah you can't figure me out!" So I opted to assume it was just Timmy's body. I treated the high level and gave Timmy his bedtime snack. I chose not to check ketones, being that I would have to wake Timmy up to retreive the cotton ball from his diaper in order to test for ketones.

Bad call! This morning when Merry, Timmy's Home Health Nurse arrived and checked Timmy's blood glucose level, it was 490. Yikes! Merry changed the infusion set site. After feeding Timmy breakfast and treating the carbs per Doctors orders, two hours following breakfast Merry decided it best that she check Timmy's blood glucose level again. Timmy's level was still high (450). Merry tested Timmy's urine for ketones. Have you guessed where I'm going with this story yet? Yep, you guessed correctly, Timmy had a moderate amount of ketones in his urine! After 7 years of NO ketones, we now have ketones.!? To say the least we were shocked. Merry even opened a brand new vial of test strips and got the same result.

Now dealing with Timmy's diabetes gets very scary. Diabetic Ketoacidosis is a very dangerous/serious condition. What signs if any will Timmy exhibit in relation to diabetic ketoacidosis? Up to this point, Timmy has NEVER exhibited any signs of either low or high blood glucose levels.

Where we will sail off to in our new diabetes adventure? We shall see. Timmy's body will determine our next port destination.

Going To Visit Grandma

2011-02-15T10:20:00.000-05:00

In just over 24 hours Floyd and Nate will be leaving to go to IL to visit grandma. (Floyd's mom) Ms. Wilma is undergoing radiation treatmwnts for cancer. Her cancer was discovered in December. Floyd is taking each of the kids one at a time, so that grandma is able to spend much needed quality time with each grandchild individually. This way, the kids aren't competing for attention from grandma.

Letting Nate go away so far from his home without me is very difficult for me. Nate and I haven't been apart for more than a few hours.

Floyd is a wonderful dad. He manages to take care of all of Nate's needs. What do I mean by manages? You mom's out there understand what I mean when I say "we" care for our babies better than daddy does. We know what each little whine, cry, grunt means. We respond to our babies at a minutes notice when they need something. Dads sometimes tend to overlook the fact that the baby needs their attention, like NOW. It isn't until the baby starts crying hysterically, that dad is willing and ready to step in and meet the baby's needs. Dads tend not to have as much patience. They are in their own little world most of the time. At night dad's turn off their ears. They don't heear the baby needing something until mom has been up for awhile and has the baby almost settled back into their bed. Does this sound familiar to you? Or is Floyd the only dad like this?

So now you can understand why I'm a bit depressed about letting Nate go away for 3 whole weeks!

I LOVE all of my children equally. But me and Nate and me and Timmy have this "special" bond. With Nate and Timmy my maternal instincts are hyper sensitive. I don't like having them out of my sight for too long. I'm not sure why I'm this way only with Nate and Timmy, unless it is because they both have a disability. Mommy wanting to overly protect her little ones. ?

Maybe with Nate and Floyd away, I will be able to have some quality "ME" time. A time for me to be able to catch up on this blog, to read, relax and not stress over the daily "to-dos". Yes, I will still have the other 3 (Timmy, Emily, Zach) in the evenings. During the day they will be in school. So all day starting at 9:00AM the rest of the day is MINE, until 2:45PM.

Oh what joy! But can't wait until my baby Natie Cakes returns home and is once again in Mommy's arms.!

Cool Dude...

2011-02-14T08:29:00.002-05:00

We have been frantically searching for a "good" pair of non-jprescription sunglasses for Nate. Ones that are baby friendly and comfortable to wear. We finally found some that we like, that were pretty inexpensive. Baby Banz, http://www.babybanz.com/ had what we were looking for. The sunglasses have a nylon strap with velcro adjustment. We only paid $29 this includes shipping. The thing that I didn't like about having to order from Baby Banz is that they only carry 2 colors, pink and blue. Amazon had many more color choices, but they were currently out of stock. And we needed something quick.

Nate's sunglasses arrived via USPS on Friday afternoon. Being that the weather was nice on Saturday we were able to go for a walk. It was sooo nice to be able to walk with Nate and him be able to open his eyes, look around and observe the world around him. Nate's eyes are very sensitive to light. In the past when we have gone on walks he has had to keep his eyes shut and this frustrated him.

Look out world, there is a COOL DUDE in town!

"I had much rather have a Harley and a Leather Jacket. But swinging is FUN!"

"Oh come one Timmy, Mommy says you have to share." This was Nate's 1st time outside having a turn in the swing. Judge for yourself whether he liked it or not.

Isn't he just the cutest???

Sunday - School Podcast - Cold Weather Week

2011-02-13T11:37:00.001-05:00

3 Year Old Miracle Boy!

2011-02-12T10:58:00.000-05:00

Chase Britton is one Very AMAZING little boy! He definately gives me HoPE for Timmy's future.

Another Inchstone Reached

2011-02-10T21:22:00.027-05:00

Yet another sign that my little guy is growing into a big boy!

By the time Timmy had reached 14 months old, he still hadn't gotten his 1st tooth. We were very concerned and asked his Pediatrician if this was normal, being that Timmy has a hormone deficiency. We were told to address our concerns with Timmy's Endocrinologist.

Timmy's Endocrinologist assured us that Timmy would get his teeth. He stated that one of his boys didn't get their 1st. tooth until he was almost 18 months old.

Within a few days following Timmy's Endocrinologist visit, WHAM, Timmy had his 1st tooth. Three months passed, no more teeth, but time once again for an Endocrinology visit.

Dr. Ali asked if Timmy had any teeth yet. We all were happy to show him that Timmy did indeed have 1 lonely tooth. The others will come he stated. Again within a few following the Endocrinology visit, SURPRISE, Timmy had his 2nd tooth. I swear that Dr. Ali must have placed Timmy's teeth. Once the 2nd tooth was fully in all the rest of Timmy's teeth started coming in like popcorn.

Unfortunately Timmy now has more teeth than his small mouth can hold. So in the near future Timmy will possibly have to have dental surgery to surgically remove some of his teeth to allow room for his permanant teeth as they come in.

Myself and Timmy's Home Health Nurses wiggled and wiggled this tooth for almost 2 months trying to get it out. Each time we would try Timmy would cry. This would break our hearts knowing that we had possibly caused him to be in pain.

Timmy's Teacher in now not only Timmy's Teacher, but also his Dentist. After us trying for what seemed like FOREVER to pull the tooth and Timmy crying each time., Mrs. Bishop asked Timmy to let her try. Timmy giggled and smiled (His way of communicating YES/Okay.) Mrs. Bishop tries twice and out pops the tooth. Timmy DID NOT cry once! Goes to show what a wonderful trusting relationship Timmy has with his school teacher.

Timmy had a Special late night visitor, who bought his very 1st. pulled tooth from him for a grand total of $7.00!

Poor Emily now wants all of her teeth to be loose so that she can pull them all and get some money. She has also request to speak with the Tooth Fairy so that she can inform her just how much she expects for all of her teeth.

Oh forgot to mention, Emily feels that her teeth are worth $20.00 a tooth. Yikes! She doesn't need a Tooth Fairy, she needs Bill Gates!

Feeding Tube Awareness

2011-02-08T16:22:00.001-05:00

February 6-12, is Feeding Tube Awareness Week.

http://www.feedingtubeawareness.com/

This website was created by parents for parents, other family members, friends and strangers, to educate and to bring awareness. The website has good information, resources, family stories and practical tips and other general information of interest. Check it out.

There are a lot of misconceptions about feedding tubes. I would like to take the time to share our experience.

Timmy has had his feeding tube for 4 years. His tube was placed after his 2nd hospitalization with pneumonia. The doctors suspected that the pneumonia was due to Timmy aspirating. A swallow study showed no aspiration. We opted to go ahead with the feeding tube placement. We felt that it would be beneficial in the treatment of Timmy's diabetes and to administer medications.

The decision to have the feeding tube placed wasn't an easy one for us. At the time, we were so overwhelmed with the day to day care of Timmy's other complex medical needs. We felt that by having the feeding tube, we would only be adding more stress to our lives. In the end the pros outweighed the cons.

At first, we too had a lot of misconceptions. After speaking with Timmy's Gastro-Intestinal Doctor and other families who have children who have a feeding tube our fears and misconceptions we put to ease.

*We like to do a lot of travelling. We thought that by Timmy having a feeding tube we would be restricted as to where or how far we could go from home. Actually by Timmy having a feeding tube, we have opened up more travel possibilities. And travelling with Timmy is a lot easier. We don't have to worry about trying to find a resturant which has soft foods of the consistancy that Timmy can eat. We can give Timmy formula via his feeding tube over a 15-20 minutes and off we go. He has been feed. No worries.

*We had heard that "most" children who have feeding tubes, their feeding tube stomas stay infected all of the ime. In our case this isn't true. Over the past 4 years, Timmy's feeding tube stoma has never been infected. As long as the stoma is kept clean and dry, this cuts way down on the risk of an infection. We also apply a protective barrier cream (Nystatin or Bactroban) twice daily, which has helped.

*Some people are under the impression that those with feeding tubes can not eat orally. In our case, Timmy can and does eat and drink orally. Timmy's feeding tube was primarily placed to administer daily medications, to help us better manage Timmy's diabetes and to help keep him hydrated when he is sick and refuses to eat/drink. There are some children who can not eat/drink orally. The list of reasons are long, but a few examples may include, possibility of aspiration, cleft lip/palate, lack of muscle tone in the neck/face oral sensory issues.

*Some people are under the impression that a child who has a feeding tube can not take a bath or go swimming. This isn't true. Timmy takes a bath every night. He has been swimming many times and even to the beach. As long as the feeding tubes balloon is properly inflated, which creates a seal around the feeding tube stoma, no water can get into the body.

*A child who has a feeding tube can have "tummy" time on the floor to play. Timmy loves to lay on the floor and he has never complained about the feeding tube hurting his stomach. We have not noticed any redness or bruising after Timmy has spent a while playing on the floor on his stomach.

If a child has reflux, the child's gastro-intestinal Doctor may suggest when placing the feeding tube that a Nissen Fundoplacation be preformed as well. This is a procedure in which the bottom portion of the esophagus and the top portion of the stomach are "tied" off to prevent food from re-entering the esophagus from the stomach. (acid reflux)

Some parents have stated that if they feed their child too fast via the feeding tube, this causes the child's reflux to become worse. We have noticed this as well with Timmy. When we feed Timmy via his feeding tube, if we feed him over 15-20 minutes, this reduces his reflux. Timmy also had a Nissen Fundoplacation when he had his feeding tube placed, but we think that the Nissen is failing and needs to be revised. In some medically complex children, having to have the Nissen Fundoplacation revised is a possibility. The revision is a surgical procedure, which may require the child to have to be hospitalized for a few days following the surgery.

Help spread the word to bring awareness and to educate. So that those who have feeding tubes can one day be treated as an equal part in society.

Dr. Ali's Gift

2011-02-08T15:01:00.000-05:00

It is nice when as a parent of a special needs child, we are able to take our children to see one of their Doctors when the child isn't sick. To have a special visit. A visit in which you are able to thank the Doctor for all s/he has done for your child and the entire family. A visit in which you let the Doctor know that he isn't just a major team player in the care of your child, but a true family friend.

It is nice to be able to walk into the clinic, tell the receptionist that the Doctor is expecting you. And No we don't have an appointment. To be called back to see the Doctor after just a few minutes. To see the glares from the parents of children who are tired, hungry, anxious, being unruley, who have been waiting to see the Doctor for what seems like hours. The glares don't bother you, because for once our child is seeing the Doctor and s/he isn't sick. The glares don't bother you, because your heart is filled with joy, love, pride, thanks, so many emotions to even put into words.

We had one of those visits today.

We took Timmy to see his Endocrinologist. Timmy had a special Christmas/Thank You gift to give to Dr. Ali. Dr. Ali is and has been Timmy's/our #1 team player, in Timmy's care, for the past 7 years. Without Dr. Ali's professionalism, care, dedication, knowledge, understanding, and his ability to trust and believe in us as Timmy's parents, Timmy wouldn't be as healthy as he is today.

Thank You Dr. Ali for all you have done and all that you do to help keep Timmy healthy.

Sunday - School Podcast - Happy New Year

2011-02-06T03:44:00.001-05:00

Calendar Kids

2011-02-05T14:50:00.000-05:00

Timmy along with 12 other extraordinary children, all of them patients of N.C. Childrens' Hospital, will be featured in the 2011 N.C. Childrens' Hospital "A Patient From Far Away" calendar. The children and their families hail from as far west as Bryson City in the mountains to as far east as Newport near the coast. Each month N.C. Childrens' will debut the story behind the patient featured in the calendar spread for that month. The Calendar Kids and their story can be viewed by visiting www.ncchildrenshospital.org/calendarkids
To read a story from a past month, simply click the name of the child you would like to learn more about. The links to the previous months are located to the left of the page.

Timmy's picture and story will debut in October. Yes, Timmy's birthday is in November. Being that UNC's telethon airs in November, the calendar kid for that month is the child being featured during the telethon.

We have a paper calendar, which has a small story entry of each child featured each month. I personally have really enjoyed reading about and getting to know the featured children.

Pictures From The Past

2011-02-03T21:18:00.000-05:00

One of Emily's classmates (Ashlyn) mom created a photo album on http://www.winkflash.com/ for parents to upload class pictures. This photo album is a great way for those parents who are unable to attend class events to see just how much fun the kids had. Thanks Melissa!

I'll admit I had forgotten about the album, until I was going through some ond e-mails and came across the link.

Here are a few (not all) Holiday and Farm Inquiry pictures of Emily and her friends.

100th Day

2011-02-02T21:05:00.000-05:00

Today is Emily and Timmy's 100th day of school. They each had to do a project that included 100 objects to represent the 100th day of school. I have to admit this my favorite project of the school year. I get to use my creativity to guide Emily and Timmy in learning.

This year was Timmy's 2nd year doing this project. This year the project was lead by the UNCW student teacher in Timmy's class. Brandi made up bags which contained a paper hat and a few object to help get parents and the child started with making the 100th day hat.

Where's Timmy?

We used a blue Bingo Dobber, sticky back ABC's, the numbers 0-9, and a few other miscellanous "shaped" objects that had to be glued to complete the hat. Doesn't he look so cute?

100 multi colored pom-poms glued to a paper plate make up Emily's hat. She had LOTS of fun helping to make her hat. She was so proud of her creation she wanted to wear the hat to bed last night and to the bus stop this morning. We came to a compromise, she was allowed to wear the hat for a few minutes this morning before we left out to go to school.

How adorable is she?

I looking forward to next year!

Family Recipe For Excitment

2011-02-01T21:45:00.000-05:00

Over the past 7 years we have tried this recipe for "Weekend Excitment." Today the recipe was perfected. Here is what you need to make your own "Weekend Excitment."

INGREDIENTS....

*A Friday evening or early Saturday morning (Friday evenings work best)
*A forecast for a significient snowfall for the Northeast
*A Little Boy (A Little gril may be subtituted)
*An insulin pump (Any medical equipment necessary to substain life may be substituted)
*A 6 month old who is sick with the flu and a cronic ear infection that needs to be fed, changed and wants attention, so they are screaming to the top of their lungs
*Long acting insulin with syringes (Any medication that can be added to the normal regiment will work)
*Prayer (optional)
*Ear plugs (optional)

WHAT YOU NEED TO DO....

1. Combine the weekend day and the significient snowfall in the Northeast. Set aside.

2. Play with, hug, and kiss the little boy, who has brittle diabetes. And who has a pancreas with a mind of its own, which causes the little boy to exhibit absolutely no normal signs/symptoms like a typical daibetic.

3. Slowly add the insulin pump to the little boy. This pump will help substain life and help the little boy grow and flurish.

WARNING: WITHOUT WARNING THE INSULIN PUMP WILL ONLY FAIL ON WEEKENDS!

4. Briskly add the sick screaming baby. And insert earplugs into your ears if desired.

5. Pray that there is a current standing prescription long lasting insulin on file at your pharmacy of choice. Pray that you are able to reach the Endocrinologist by phone or pager being that it is a weekend and he does have his own family and life to lead. Pray that the sick screaming baby will fall asleep, long enough for you to take care of the emergency at hand.

6. Call pharmacy. Have needed insulin. Call Endocrinologist. Reach Endocrinologist. Get orders for the correct amount of insulin to give. Call Animas to try to trouble shoot the insulin pumps problem. COMPLETE PUMP FAILURE.

7. Combine the weekend and predicted snowfall to the other 6 ingredients.

Product is complete after 72 hours of no sleep, head full of grey hair, all fingernails are jagged, and complete loss of sanity AND the replacement insulin pump arrives via UPS.

Sunday - School Podcast - Gardening

2011-01-30T03:24:00.001-05:00

I have to admit I had forgotten all about checking Timmy's class website to see if any podcast had been recently posted. Fortunately for me, Timmy returning to school following Christmas break was delayed, due to snow. So I have only missed posting 2 podcast.

Round Three With A Twist

2011-01-28T15:48:00.002-05:00

Winter is my least favorite season. I hate having to bundle up in layer upon layer of clothing. I hate being cold. I hate when my babies get sick and have to suffer through the aches, pains, fevers, spitting up, loss of appetite etc. that goes along with the flu or a cold. It breaks my heart that during these illnesses that I can't just take away all of their blah and leave them happy, smiley and care free once again.

During the winter it seems that no matter how careful we are by frequently washing hands and by sanitizing items and surfaces once a person has finished using it, the inevable happens, someone gets sick.

Timmy was the lucky or should I say the unlucky one. He was the first in the family to be diagnosed with the flu. For a child with a compromised immune system, he ended up having the mildest case of the flu that I have ever seen, thank goodness. Like most kiddos who have compromised respiratory systems, when Timmy gets sick his condition can go downhill very rapidly. Forty-eight hours with a temperature, 2 days of missing school, and a productive cough, this was the extent of Timmy's flu symptoms and its full course.

Now Emily and Nate both have been diagnosed with the flu. Emily's symptoms seem to be similar to those Timmy has. Poor Nate has not only these symptoms, but the achiness, runny nose, spitting up, and a cronic ear infection. It has been 4 days since he has shown symptoms of the flu and he just is starting to turn the corner for the better. It breaks my heart to look into his puppy dog eyes, which seem to be pleading with me to take away the aches and yuckiness of his illness and all I can do is cuddle with him and try to will the medication to work faster and will his body to get well soon.

I'm counting down the days until the first of April. At which time here the weather should be much warmer. My favorite season of the year. Only 61 days to go!

Happy 15th Birthday !

2011-01-26T09:23:00.102-05:00

Happy 15th birthday Zachary!!!!

You have grown into a very Loving, Caring Polite, Dependable, Helpful boy. (Well, you are a teenager, so these characteristics only occur when you want them to be shown to others.)

There are a couple of events leading up to your birth that are vivid in my mind.

My OB/GYN decided that being the ultrasound showed that you weighed over 8lbs, that it was time to induce my pregnancy at 37+ weeks gestation.

I was admitted to the hospital on Jan. 24th, so that an amniocentesis could be preformed to check your lung maturity before my induction. The test results came back positive that your lungs were definately mature.

Ray, Ray and your older brother, Linwood (Jr.) came up to visit. Many, many years ago, a pack of Energizer batteries had a bright green sticker which informed customers of the battery test strip provided on the packaging, whcih indicated that the package of batteries were indeed fresh.

With this pointer finger of his left hand in his mouth, Jr. poked his little right hand, which held the sticker, through the bed rail and offered me the bright green Energizer sticker. While doing so, he softly and with a shaky voice from being afraid said "Happy Birthday Mommy!" This brought tears of joy to my eyes. A simple sticker offered to me as a birthday present. A simple sticker that most people would look at as just another piece of trash. Was given to me with so much love and from the heart by a humble 4 year old, meant so much to me.

I asked my Nurse for an armband and some tape, which she provided me with. I placed my special birthday sticker on that armband and secured it into place with tape. I proudly wore the armband the entire time I was in the hospital. I still have this armband safely put away with other momentos from years past.

. The vision of my hyperactive, yet loving 4 year old offering me such a simple gift of love, stays with me to this day. That was the best birthday present to this day I have ever received.

There are a couple of numerical facts, which are interesting pretaining to your birth and my birthday;

1. The year of your birth (1996), reverse the last 2 digits and you have my year of birth (1969)

2. The numbers of your time of birth (3:43PM) + The numbers of your birth weight (7lbs 2oz.) + the two digits in your birth day (27th) = the age in which I would be on my birthday (27) on Jan. 27th, 1996.

3. Starting at your 1st birthday, the number of years you are or when one adds the two digits in your age, when I add the two digits of my age upon my birthday, will either equal your corrent age or the two digits in our age will be the same. For example, take your age this year, (15) upon my birthday Jan. 27th (tomorrow) the two digits in my age (42) will also equal (6). 1,5 =6 AND 4,2 =6 . This pattern continues or some variation of it for many, many many, years.

You Are 6 - Months Old

2011-01-23T09:21:00.067-05:00

This is one of my favorite pictures of you. You have the sweetest expression on your face and I just adore the way that you have your hands together.

This past month has been an exciting time. You had your 1st. Christmas. And a lot of milestones accomplished.

You learned to push up on your arms. And you are willing to play alone for a few minutes, while mommy takes care of necessary housework.

You really enjoy floor time. Now that you are able to push yourself up with your arms, you tend to push yourself backwards and get yourself trapped in comprosmsing positions

You got your first 2 bottom teeth this month. You look sooo cute when you smile and show those pearlly white teeth.

You absolute HATE having to sit, even for short periods of time. I wonder if this could be a sign of what is to come once you become more mobile.

You have a wonderful personality, always smiling and laughing. You are very inquisitive, wanting to explore and learn how things work that are within your reach. You are also demanding. You are truly a routine oriented little guy. Everything in your life HAS to be kept on schedule or you have a terrible meltdown. You ability to focus and track people and objects has greatly improved. You LOVE playtime with your brother Timmy. After your breakfast you insist (by fussing) if we don't go into Timmy's room to spend time with him while he is getting ready to start his day.

You are starting to want to put yourself to sleep at night, rather than mommy rocking you to sleep. On the nights that you rather self soothe yourself to sleep, I miss our quite quality time that we share at bedtime.

This is a picture of you and daddy during your 2nd snow storm. The 1st snow storm in which we received 4-+ inches of snow. We both had an eye doctor appointment at Duke. After a long day of doctor appointments and returning home late, mommy didn't think about taking any pictures.

Our adventure together continues. What will next month bring? I can hardly wait to see.

Some Cuteness To Share

2011-01-20T19:07:00.000-05:00

Timmy's Autumn Kindergarten Picture. Is he just the cutest?!

My 13 year old son, Zachary, was given a class assignment during the 1st. week of school. The assignment was for him to write a short biography about himself. This assignment was to help the teacher to get to know her students better. Zachary's teacher called me yesterday to discuss the paper that Zachary had submitted to her. She just thought that it was so touching, even though it wasn't exactly what the assignment that was assigned was suppose to be. When Zachary got home, I asked him why he hadn't followed the directions that the teacher had given him for his biography. With tears welling up in his eyes, he says, "I'm sorry mom! But my teacher has the next 9 months to get to know me. I feel that everyone should get to know Timmy too." All I could do was to give him a hug! What a loving and caring big brother Timmy has. Here is a copy of the paper that Zachary submitted to his teacher. I asked his teacher to email me a copy and she did. I worn you, this brought tears to my eyes. Maybe it is because I'm the proud parent of both of these special boys!

Zachary
September 2, 2009
Nowell-3rd

Timothy

It was five years ago when my little brother was born. I was 7 years old. I remember he weighed 1lbs 6 ounces and he was only a foot in length. He was born 2 months early, so he had to stay in the hospital. I remember my mom sitting down with me and explaining to me that my little brother was very sick. And because he was so sick he had to be on a speical machine, which was helping him to breathe. I also remember her telling me that he had Down Syndrome, that his brain was abnormal, he has a small head, was born without any eyes, that he has diabetes and that no one was sure if he could hear. I started to cry and I asked, "Will he ever be able to play with me?" My mom told me that yes he would be able to play with me, but only in a different way. That no one was sure, but Timmy may never be able to walk, run or talk.

Being I was so young, my mom had to get special permission from someone at the hospital, so that I could go and see him. He was so small and was hooked up to alot of wires. I was so scared! I remember thinking, if I could have 1 wish, it would be for my brother to be on and to come home soon. My mom broought along a book for me to read to him. I don't remember the name of the book. I did have fun reading to him. And all of the nurses in the NICU told me I was so cute.

Four and a half months after he was born, it sure seemed a lot longer than that to me, the doctor's said it was ok for him to go home. While my mom was busy getting things at her house ready for Timmy to come home, I had to stay with my dad, at his house. When Timmy finally was home and I was able to see him, I asked my mom if I could hold him. She said yes. He was still very smal, weighing only 7lbs 2ozs. But I enjoyed holding him for the first time.

One afternoon when I got home from school, I noticed an unfamiliar car in our driveway. When I entered the door I found a strange person in out living room. I went to ask my mom who she was. My mom told me that we were going to have nurses to help us care for Timmy. I personally didn’t like this nurse, because she was boring, rude and never paid much attention to Timmy. All she did was read a lot. My mom didn't keep this nurse around very long.

The one thing that Timmy hates the most is having his teeth brushed. One morning not too long ago, Timmy's nurse told him it was time for him to get his teeth brushed. Timmy did what he usually does, which was to shake his head no. But this time when the nurse had him to touch the tooth brush he said "Oh man!" That was so funny!! It was also the first time that I had heard Timmy say something other than MaMa.

When my brother was born he had to have a tracheostomy to help him breathe, because both of his nasal passages were blocked. Two months ago he had a sleep study. When he came back the doctors had taken his trach out. I was so happy and proud of my little brother.

Timmy has alot of medical issues, I still enjoy playing with him. My favorite game that we both like to play is when I take him for a fast ride around the house, pushing him in his toddler rocker. We use to play a similar game, when Timmy was younger and used a baby walker. He just thinks this game is so very funny. I love to hear him laugh, because it makes me feel good to know that I'm making him happy.

I LOVE my brother Timmy!!!!!!!!

Meet The GrandKids

2011-01-14T16:05:00.018-05:00

Meet Distiny Marie. Age 2 and already potty trained and has been since she was 18 months old. She is truly a Mommy's girl.

Meet Jeremiah Ethan. Age 4. He was given his Uncle Timmy's middle name. Want to know facts about "Thomas And Friends?" He is the one to ask. He is hightly obsessed with "Thomas" and has been since he was about 1 year old.

This is my daughter Tamarah Kali. She is 23 years. I think that she looks ALOT like me. She is a very caring, loving, generous, helpful, respectful, humble, (geez I can't think of anything negative to say.) Except that she can have one heck of an ATTITUDE when she wants or doesn't get her way!

Emily and Jeremiah.

wmily: I'm the cute one.

Jeremiah: No, I'm the cute one.

Video - Mom Speaks with the Director of Special Education

2011-01-13T16:34:00.001-05:00

Have you had to face this type of situation???

I experienced this same situation with my now 23 year old daughter, Tamarah, when she was in the 2nd grade.

From infancy to age 3 years, Tamarah had chronic reoccurring ear infections, which led to a speech impairment and minor hearing loss. Following the placement of ear tubes on numerous occasions and 2 years of speech therapy, things worked themselves out for the better for her.

It was apparent when Tamarah started school that there was a problem. She had trouble recognizing her ABC's and core reading words. By the middle of 1st grade, I had a parent-teacher conference, at which time I voiced my concerns about Tamarah having trouble reading. I wanted her tested, so that she could be placed in a special Ed class for extra reading help. The extra attention and help that she was getting at home from me didn't seem to be helping to improve her reading ability. I was assured that she wasn't that far behind and by the end of the school year, her teacher expected that Tamarah would catch up to her peers in her reading. Not knowing any better I bought this explaination.

By the end of the first grading period of Tamarah's 2nd grade year, she was still having problems reading and comprehending what she had read or what someone else had read to her. I requested a parent-teacher conference. It took 3 weeks for the teacher to get this conference setup. Myself, the assistant principal, the schools Special Ed teacher, the school counselor and a couple of other people whom I can't recall.

To make a long story short. I stated my concerns and requested that Tamarah be tested. We all went around and around on why I felt that she desperately needed some type fo formal testing and the members of the meeting stating why they felt that she didn't. By the end of the meeting I was soooo frustrated, but I had won the argument. They agreed to test Tamarah.

It took 2 weeks for me to receive the necessary paperwork that I needed to sign before the testing could be completed. And yet another 2 weeks before the testing actually took place. Once I was notified that the testing had been completed and that Tamarah wasn't eligable for special placement for reading help. I requested a meeting so that I could have the results of the testing explained to me. Come to find out all that the testing intelled was Tamarah reading from a long list of words! Come on, she was able to read words from a given list. THAT WASN'T THE PROBLEM OR EVEN MY CONCERN!

Being I was getting nowhere, I just dropped the issue and gave Tamarah even more of my undivided attention at home with reading and reading comprehension.

At the time I didn't realize that as a parent I had certain rights. Having Timmy has taught me things that I wish I had known many years ago.

*A parent has the right to request that their child be tested when there is a concern. And the school system MUST preform these test to a certain standard.
*A parent has the right to be present during the testing.
*A parent has the right to know who will be doing the testing and under what enviroment the test will be conducted.
*A parent has the right to know what materials, strategies and techniques will be used during the testing.
*A parent has the right to request a meeting in which the test results are shared and explained.
*A parent has the right to a written copy of these test results.
*A parent also has the right to take their child for testing by an independant person not associated with the school system for a second opinion. And to have the opportunity to present these findings to the team memebers involved on the school level.

My advice to parents of a Special Needs child; know your rights and DEMAND what you feel your child needs and deserves in order to be as successful in school and life to the best of their ability.

Christmas Gifts - 2010

2011-01-03T10:59:00.001-05:00

I know, I know. I'm a bit behind with this post. But as the saying goes, better late than never. During the day I'm either feeding Nate, cleaning house, there is a Doc appointment to attend or something else comes up that takes me away from the computer. So when nighttime arrives and I do have a few minutes, I choose to go to bed early instead of updating the blog.

We or more accurately Floyd, didn't take any Christmas Day pictures of the kids opening their gifts from Snata. He only took video. So I won't bore you with any long video clips. Here are a few pictures that I took of the kids a couple of days before Christmas.

Here are some of the gifts that the kids received from Snata, family members and friends, that are their favorite and mine.

Nate sitting in his Fisher-Price Bounce N Spin Froggy. I like this toy because of the toys, its bright colors, and the music that plays when the frogs eyes are spun. This teaches cause and affect and Hand Eye coordination. The only thing that I dislike about this toy is that it doesn't have any lights. A better choice would have been Fisher-Price Step and Play. It has lights, music and lots of interactive toys. Unfortunately we didn't find this until just before Christmas.

Sensory Symphony by Sassy. This is Timmy's favorite toy. Each fish has a different texture. There is a volume control switch. And there is 3 modes of play; continuous music, make your won song (each individual fish has it's own musical note), and finish the tune.

LOL Roll Over Rover - This dog is hilarious! The dog actually rolls over and laughs. This is Timmy's toy, but it is Nate's favorite. I believe it is because of the color contrast (black and white). Nate loves to watch the dog roll over and laugh. He just gets hysterical when we lay him on the floor with the dog. The dog has a motion sensor to restart the dogs antics once they stop. This toy helps promote cause and effect.

Chatimal - I say what you say - Unfortunately this toy wasn't exactly what I was hoping. But it is very cute. This is Timmy's toy. The Chatimal repeats every word or sound that it hears. The down side is that the repeated words are sped up and the sound quality isn't that great. So I'm on the hunt for a toy that does something similar, but of better quality

Melissa And Doug Shape Sorter - I really like this. The pieces are small enough for Timmy to be able to grasp easily. And the fact that the shapes are to be placed on a peg rather than Timmy having to search a container for the proper matching shape hole, is a plus. The bright colors are a plus as well.

Fisher-Price Laugh and Learn Basketball - Bright colors, volume control, music, lights, cause and effect and it helps to teach numbers/counting

1-5.

V-Tech Baby's Learning Laptop - Bright colors, music, lights, volume control, raised buttons and cause and effect. This toy also helps to teach animal sounds, object names andcounting.

Bumbo Seat with Play tray - We bought this from Target. The play tray was sold seperately and is a must for playtime in the chair. This chair promotes great sitting posture.

This is Emily's favorite gift. Why did we buy a cell phone for a 5 year old you may be asking. Well, its intended use isn't for talking, but rather for playing games. After looking at the prices for PSP's and each game that would be needed to go with the PSP, we decided that giving Emily a cell phone in which to play games would be a better choice. 1. This phone was FREE. When we recently upgraded our phones, we added 2 new Smart phones. This allowed us to be eligable to choose a FREE phone. 2. Emily LOVES playing games on Floyd's phone. The games that she chooses to play are FREE or only cost $0.99 each. Compare the price of these games to those of a PSP, we come out way ahead in savings. Besides, with a PSP there are accessories that she would want and we would have to find someway to store each game cartridge when travelling. With the cell phone we only have the phone to find a safe place to store when it isn't in use.

This MP3 player is Zach's favorite. Zach LOVES music and singing. He uses MP3Rocket to download free music to his player. The kid has to charge the internal batter at least once a day. Twice if he uses the player instead of his stereo on weekends. Thank goodness the player comes with a rechargable battery. Or else we would be broke from having to replace batteries!

We bought this gift for Timmy so that he can feel more involved with his meal preparations. All of Timmy's meals are made from scratch and pureed. We use no butter, oils or salt when preparing his meals. But we do use ALOT of herbs. So we felt that Timmy would gain a lot from helping to grow and use his own herbs to put into his meals. No sight is necessary for this activity. And it will help promote the use of his hands and the sense of smell.

World's Greatest Endocrinologist

2010-12-26T06:42:00.103-05:00

Timmy's Endocrinologist, Dr. Ali Calikoglu, has been a major part of Timmy's medical team since Timmy was in the NICU. Dr. Ali has taken on the role that many other Endocrinologists have refused. If not for Dr. Ali's professionalism, compassion, caring, understanding and willingness to work along with us, Timmy wouldn't be as healthy as he is today.

As I look back on Timmy's first couple of years at home, following his discharge from the hospital, I now realize just how much patience Dr. Ali has. Dr. Ali provided us with his personal Cell phone number and his pager number, so that if we had any problems controlling Timmy's blood glucose levels, we would have an avenue in which to contact him personally.

It is through thousands of middle of the night phone calls to Dr. Ali for advice and guidance, that as Timmy's parents and Home Health Nursing Staff, we have gained the knowledge through observation to learn Timmy's blood glucose patterns. During many of those middle of the night phone calls to Dr. Ali, after him giving us his professional opinion, we would question his orders and come to a treatment agreement together. It took ALOT of patience on Dr. Ali's part to get through these phone calls with us.

Over the past 7+ years. Dr. Ali has become more to our family than just Timmy's Endocrinologist or a team member. He has become a friend. Someone whom we feel comfortable turning to if we need advice, guidance, or just a listening ear with issues that are not medically related.

Timmy and Dr. Ali will be appearing in UNC's 2011 Calendar and UNC's 2011 Endocrinology Annual Report. Here is a rough draft of the article. Dr. Ali wants to make changes and add to this article.....

****One of a kind: 7-year-old Continues to Beat the Odds****

Before birth, doctors told Floyd Gaeth there was a 1 percent chance that his son Timothy would survive. He did survive, and seven years later, he still is beating the odds.

Timothy was born 10 weeks premature. His parents knew he would have Down syndrome, but the diagnosis was much more complex: Timothy was born with multiple abnormalities of the central nervous system, eyes and lungs. He was born without eyes; one of his lungs collapsed. Shortly after birth, Timothy exhibited extreme blood sugar fluctuations, and doctors added another, unexpected diagnosis: neonatal-onset insulin-dependent diabetes mellitus. Timothy’s condition has been identified as an extremely rare genetic mutation. He inherited two mutated copies of the PAX6 gene, one mutated copy from his mother and one mutated copy from his father. He is the only living person in the world with this genetic abnormality. This makes his care especially difficult.

“Most doctors are too afraid to provide care for Timothy because there's no textbook for how Tim might react to particular treatments,” said Floyd Gaeth, Timothy’s father.

Throughout the first few months of Timothy’s life, his parents and caregivers had to monitor his blood sugar at all hours because of the severity of Timothy’s diabetes. They gave him insulin to control his blood sugar, but the slightest difference between batches of insulin was life threatening to Timothy.

After one particularly bad reaction to a batch of insulin when he was five months old, Timothy was airlifted from his home in Wilmington to N.C. Children’s Hospital. The Gaeths were connected with Ali Calikoglu, MD, chief of the UNC Health Care pediatric division of endocrinology and associate professor, who recognized the challenge of this case. With special expertise in using insulin pumps in children, Dr. Calikoglu recommended a pump to dispense the exact amount of insulin Timothy needed to keep his blood sugar stabilized.

“It definitely was tough putting him on a pump at the time,” Floyd said, “but we love it now.”

Over the past six years, Dr. Calikoglu has cared for Timothy. His symptoms and erratic insulin fluctuation are unlike anything the 30-person team in the division of pediatric endocrinology had seen before.

“Dr. Ali is the only person who will treat Tim's diabetes,” Floyd said. “Dr. Ali's management of Tim's diabetes is the reason Tim has survived this long. Dr. Ali has been there with Donna (Timothy’s mother) and me the whole time. Our son has been to his deathbed twice, and Dr. Ali and the staff at N.C. Children’s helped us march him back both times.”

Dr. Calikoglu and Timothy have a special relationship. Timothy lights up when he hears Dr. Calikoglu’s voice or feels his touch.

“Timothy isn’t just my patient — he’s my friend,” Dr. Calikoglu said. “It’s really incredible that he has not only survived but is going to school and interacting with other people.”

Dr. Calikoglu has been the driving force behind Timothy’s coordinated care. Together with the family and Timothy’s other care providers, he has monitored Timothy’s progress closely and made incremental changes continuously to affect improvement in Timothy’s health.

Timothy’s care demands coordination at the highest level — from pediatric pulmonologists to the endocrinologists. Caring for Timothy requires creativity and passion.

“Dr. Ali thinks out of the box every day, every hour,” Floyd said. “He’s not afraid to speak up to do what’s best for Timothy. He looks at every piece of the puzzle, every angle to do what is best for our son. Out of all the parents in the world, we get to be Timothy’s parents, and we are glad that out of all the doctors in the world, he ended up as Dr. Ali’s patient.”

For the Gaeth family, Dr. Calikoglu is on call anytime day or night no matter where he is. His support and understanding of Timothy’s condition have empowered the Gaeth family to provide the high level of monitoring and round-the-clock care he needs. This trusting relationship between Dr. Calikoglu and the Gaeth family has made a difference in Timothy’s care.

This relationship has also made a difference in the field of research. The Gaeths have been to the NIH to meet with geneticists interested in learning more about Timothy’s case.

“Caring for Timothy is not only very interesting, but challenging,” said Dr. Calikoglu. “I’ve learned more from working with Timothy than in my whole career. This family has been instrumental in helping us understand their son’s condition, which will help us develop treatments strategies in the future for those conditions.”

Today, Timothy attends first grade at a year-round school.

“He is a thriving 7 year old who is doing things we were told he would never do,” Floyd said. “My dream is that one day he will get up and walk.”

Merry Christmas

2010-12-25T00:27:00.001-05:00

MERRY CHRISTMAS
From Our Family to Yours!

5-Months Old

2010-12-23T14:25:00.002-05:00

It is amazing the difference one month has made in your physical and cognitive development. Physical and vision therapy started one month ago. When these therapies started you were unable to do much of anything. No matter what we did to try to stimulate you, all you wanted to do was sleep the day and night away. But look at you now.....

You are now able to roll over in both directions, hold your head up while sitting, push yourself up onto your forearms, and bare your weight on your feet while being held in the standing position.

You are able to follow people and objects much better with your eyes. You turn your head in the direction of a person when they call your by name. You can manipulate a toys with both hands while playing with it. But your all time favorite play thing is your hands and thumbs. You are starting to reach for and explore desired toys.

You are starting to tolerate being apart from Mama for longer periods of time. And can play alone for short periods of time.

Your favorite time of the day is bathtime. While getting you undressed for your bath you always laugh and smile with anticipation of what is to come. Following your bath, playing Peek-A-Boo with the bath towel is one of your favorite games.

You are a good eater. You are now taking 6-8oz of breastmilk every 4-5 hours. I have tried feeding you some solids. You did not care anything for sweet potatoes. But LOVED the squash. Or maybe this liking was because Timmy was sharing him meal with you.

You are a very good baby. You seldom cry, only when you have a need that you want taken care of right away. These past 5 months have flown by. I can hardly wait to see what the future holds for us together.

Just Because.....

2010-12-17T21:45:00.001-05:00

A parnet of a child in Emily's class set up an ablum on http://www.winkflash.com/ for those parents who were able to attend the field trips/parties thus far, so there would be a place to upload any pictures fthey would like to share with us parents who have been unable to attend any of the school field trips/parties.

These pictures were taken at Old McFaye's Farm in late October.

Timmy's Class Christmas Program

2010-12-16T23:04:00.003-05:00

                  MERRY CHRISTMAS


For several years it has been Mrs. Bishop tradition to conducted a Christmas Program with her students for the parents. This years program was sooo cute. Timmy was sooo excited and vocal, that he wore himself out and eventually ended up falling asleep.

Here are some other really cute pictures.

Timmy and Chris (UNCW student teacher) Chris used this picture for his Christmas cards.

Timmy wearing his friend Cameron's hat.

Just couldn't decide which picture I liked the best.

Timmy and his friend Cameron. Timmy has taught Cameron that it is ok to laugh when someone else is getting into trouble.

Timmy, Christ (UNCW stufent teacher) and Chris's girlfriend. Chris is the one who painted Snata's sleigh. From what I have been told, Timmy really enjoys his one-on-one time with Chris. The 2 of them do a lot of academic activities together.

Sunday's School Podcast - Old McFaye's Farm

2010-11-21T05:19:00.051-05:00

Old McFaye's Farm

Old McFaye Had A Farm E.I.E.I.O...

And on her farm she had a.....

Daddy and Me

2010-11-20T22:11:00.000-05:00

Daddy, like son.

Shhh, let's not wake them. They just might be dreaming of being Frog Princes. They both definately fit the part.

Brother And Me

2010-11-19T22:32:00.001-05:00

Timmy really does love his baby brother. Even though his comment about Nate being in his bed with him was "Oh Boy!" Nate is starting to teethe. Almost everytime Timmy and Nate are placed together Nate tries to use Timmy as a teething toy.

These are two of my favorite pictures of Nate. He is 3 1/2 months old here.

Nate is definately a momma's boy. I can't get more than 6 feet away from him before he will start crying. I swear this kid must have a radar that goes off whenever I'm out of his sight. He will let NO ONE else rock him to sleep at night, not even daddy. He has a favorite rocking position. The same songs must be sung each night in "his" selected order. If I deviate from the song order or add a new song to my loong singing list, he will protest.

Nate is a high maintance little boy. He has a wonderful personality and the cutest laugh.

Where Did My Baby Go?

2010-11-03T10:17:00.032-04:00

HAPPY 7th. BIRTHDAY !!!
For a child who was only give less than a 1% chance for survival, he has come a loong way!

On Thrusday Oct. 30th 2003, I went to my bi-monthly ultrasound appointment. I was 30 weeks pregnant. By this time in my pregnancy, my OB/GYN was letting us make the call as to my care. At this appointment my ultrasound showed that Timmy hadn't grown any in almost 3 weeks. My amniotic fluid level was non existant and had been at this point for over 10 weeks. The blood flow from me to Timmy and vice-versa was dramatically decreasing and had reached a dangerous point. So after speaking with my Perinatologist, we all agreed that a C-section delivery as soon as possible was best for Timmy, even though the outcome looked very grim.

I was admitted to the hospital on Oct. 31st. and steriod injections were started in hopes of inproving Timmy's lung development. Timmy's heartrate was monitored 2x a day, once per shift. This was the longest and most stressful weekend of my life.

Timmy was delivered via emergency C-section on Monday, Nov. 3rd. at 10:40am. He weighed 1lb. 6oz. The NICU nurses were unable to get a length, due to Timmy having severe contractures. The contractures were a result of my not having any amniotic fluid for Timmy to free float in for 10+ weeks.

I really can't recall much about Timmy's first month or so in the NICU. My first visit to see Timmy was 36 hours following his birth. This visit was very traumatic for me. It wasn't until this point that I actually realized just how fragile and unstable Timmy's medical condition was. Timmy was hooked up to an osculator. This is a machine like a ventilator which breathes for the patient, but the osculator gives small puffs of air instead of the normal longer breaths. He had 10 infusion pumps hooked up to his little body, which were giving him electorlytes, blood and medications.

My 1st and only memory was a day or so following Timmy's birth. i went to the NICU to visit with Timmy. Pam, his nurse at the time requested that I help her change Timmy's diaper. "What??? But he is so little!" Pam calmly explained that if I ever wanted to take Timmy home I had to learn how to care for him. "But right now?" Perspiration fouring from places on my body I never knew that I had sweat glands, afraid, emotionally torn, the uncertainties for Timmy's future, I didn't know whether to stay or flee and hide until this nightmare in which I had been placed ended. Yes, no better time than now. So I tenderly and ever so carefully lifted Timmy's tiny and frail body. After this traumatic experience, I can't remember anything until just before Christmas, when we were allowed to officially hold Timmy outside his incubator for a short period of time. By this point, Timmy was pretty stable. And it had been discovered that both of his nasal passages were blocked and that he was going to require a tracheostomy to aid him with his breathing off of the ventilator. Finding a NICU and an ENT in the same hospital to place a trach was our next major part of this long and continuing journey. (More on this at a later date.)

So where has my baby gone???

I would almost swear that Timmy's Kindergarten teacher, his VI teacher and Teacher's assistant replaced Timmy with an identical look alike, when we all attended the Deaf-Blind conference earlier this year. Just over the past 3 months Timmy has gained 5+ pounds and has grown at least 4-5in. taller in the past year. His face has lost that "baby boy" appearance. And cognitively, sociially and physically, he has made awesome improvements.

So where did my small, fragile, medically unstable baby boy go? He has grown into a 40lb.+, 39in. tall, social butterfly, who captures the hearts of everyone he meets. He has taught us, medical professionals and everyone else who has come to pass many things. The most important thing being, The "dis" abled can become "enabled" if only given the proper opportunities to overcome their social, mental and physical challenges. And not every person can be judged and compared to a textbook. Each of us are unique individuals....

4 months old

1st. Birthday

Easter 2005

Late Summer 2005

Easter 2006

Christmas 2006

Christmas 2007

Easter 2008

Fall Pre-K 2008

Kindergarten Aug. 2009

Pre-Halloween 2009

Kindergarten Spring 2010

1st. Grade Sept. 2010

Sunday's School Podcast - Halloween

2010-10-31T13:07:00.001-04:00

Mama and Daddy's Little Helpers

2010-10-25T22:59:00.000-04:00

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's - School Podcast - Welcome Back

2010-10-24T15:21:00.009-04:00

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?

3 - Months Old

2010-10-23T17:22:00.004-04:00

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....!

Doctor Doctor

2010-10-09T23:14:00.002-04:00

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.

Sunday's School Podcast - Fall

2010-10-03T12:32:00.001-04:00

2 - Month Check - Up

2010-09-24T15:46:00.000-04:00

Muffin had his 2-month old check-up with his Pediatrician this morning. He weighs 11lbs. 11oz and is 22.5in. tall. He is in the 50th precentile for weight and height.

We discussed the use of Vitamin D suppliments, being that Muffin is strictly breastfed and breast milk lacks in the daily amount of Vitamin D. We also discussed the findings of Aniridia and the possibility of Nate having inherited a mutated copy of the PAX-6 gene. The Pedi is going to refer him to see Dr. Muge Calikoglu, a geneticist at UNC. And is going to work along with her to schedule Nate an MRI and ABR (Audiotory Brainstem Response) hearing test, just to rule out any possible problems.

The Pedi feels that Nate is right on target with his development. So at this time there is no concerns. How well Nate can see is still up in the air. It will probably be months before we have an actual idea. But we do know that he can see, at least light. When someone turns on or off the light in the room in which Nate is, he will startle. And he reaches for toys on the toybar on his bouncy seat and likes to stare at his mobile, which has sound as well as lights.

Nate had his 1st set of immunizations. Holding him and seeing him cry out in pain, hurt me just as much, if not more, than the needle sticks hurt him. We enjoyed some nice cuddle time afterwards and all was forgiven. But why is it that Moms are always chosen to do the dirty task of holding down the baby/child when they get their immunizations?

2-Months Old

2010-09-23T22:43:00.000-04:00

Wow, boy how time is flying. You are 2-months old today. In such a short time you have learned...

* To hold your head up pretty steadily.
* Bare weight on your legs.
*Recognize mommy and daddy.
*You have found your hands so that you can suck your thumbs. (Oh No another thumb sucker. It must be a genetic trait.)
*Turn your head towards a sound.
*You smiled for the first time at almost 7 weeks.
*You have started cooing, which is sooo cute. I so enjoy carrying on a conversation with you.
*You sleep 6-7 hours at night. We put you to bed around 9pm and you will sleep until 3am - 4am.
*You are taking 4 1/2oz of breast milk every 2-3 hours.

Your favorite thing is cuddling with Mommy. I can't get more than 6 feet away from you, because once you notice that I'm no longer close you start crying. (Thank Goodness for infant carriers!) You also enjoy bath time followed by a massage.

You hate sitting in your bouncy seat. Wait, you HATE sitting in general! You had much rather be held upright on someones shoulder, especially Mommy's. You also hate laying on your back.

Everytime you start crying Emily runs if we are immediately available to calm you and announces that you need a diaper change or to be fed. Timmy is a typical 6 year old older brother. When you start crying, Timmy starts laughing. Zach, well he had much rather for you NOT to cry. So he will pick you up and try to calm you, at least until you spit up on him!, LOL! then he is ready to put you down.

In such a short time you have brought much joy to our lives. And you turn the heads of everyone you meet. You have such a sweet nature as long as your needs are meet on YOUR schedule and ON TIME.

Oh and it is ok if others lovingly tease you about loosing your hair. Mommy loves your bald head.

The Good, The Bad

2010-09-20T22:44:00.171-04:00

When in life you are given lemons, make lemonaid. When I first read this quote 6 years ago, I knew I had to find something positive to focus on when given bad news or faced with a difficult situation, just to be able to keep my sanity. Today was no exception......

Today Emily, Nathaniel and myself all had appointments at Duke Eye Center. My visit was with Dr. Afshari, my corneal specialist. This was my 3 week post-surgery visit. Everything looks great! I can't put into words just how happy I am to be able to see once again. To be able to help take care of Timmy's medical needs. To be able to take care of my own personal needs. To be able to read with Emily and play computer games with Zach. To be able to continue with this blog. And the most important thing in my life, is once again the ability to be able to read. Reading is my life. Without the ability to read I felt lost and thirsted for information, knowledge and the satisfaction that comes with having read a good book. I so missed doing all of these thing for 6 looong months.

Emily and Nathaniel both had visits with a Pediatric Genetics Opthalmologist. Floyd took the kids over for their scheduled appointment, while I waited to be seen for my appointment.

Emily's eyes were checked first. Her vision is perfect. We didn't need an opthalmologist to tell us this. Emily misses nothing! In the mornings before we leave the house to go wait for the school bus (her bus stop is directly across the street from the house), Emily will open the window shade so that she is able to see through the window what she is missing in the house. Timmy's nurse's will hear about whatever she may have missed if she feels that it was important enough that she have been involved.

I walked in just as Dr. Young had finished examining Nate. I immediately knew something was wrong, aside from the fact that Muffin missed his Mommy and needed to cuddle, when Floyd suggested that I take Nate, sit and cuddle with him, that he needed his Mommy after what Dr. Young just discovered. My heart dropped to my stomach. It took every ounce of my being for me not to cry. Voices in my head kept saying NO THIS CAN'T BE TRUE!.... SEEK A SECOND AND IF NEEDED A THIRD OPINION! My heart knew the real truth, even though my head is still in denial. Before I got pregnant I knew the odds were stacked against me. I was willing to take that gamble. With Nate now having the diagnosis of aniridia and possibly glaucoma, I feel I still won the genetics gamble. Nate is such a good natured baby. Crying only when he is wet or hungry. In such a short time he has brought so much joy to our lives. And he makes me feel that our family is complete.

Now is where I start to make my lemonaid.....

Who better to care for and raise a baby with a visual impairment, but 2 parents who are visually impaired. We have the knowledge, skill and have mastered the tricks necessary for survival as a visually impaired child/adult in what is sometimes a not so friendly world.

We received Nate's diagnosis early. Now we are able to start the process of getting him vision therapy, which will aid Nate in learning to use any useful vision that he may have. If we had found out months or even years down the road, we would have lost a lot of ground in getting Nate the assistance he needs. If he should have glaucoma, by not knowing the diagnosis early any useful vision could be lost due to damage to the optic nerve from the inner occular pressure.

Learning the diagnosis now, we have the opportunity to seek getting Nate an MRI to rule out any brain malformations, which may need addressing with medical intervention or other therapies.

Being that some people with aniridia have hearing problems, we have started the necessary process of getting Nate an ABR (audiotory Brainstem Response) hearing test. Nate passed his newborn hearing screening, but the ABR is a more extensive test and will help rule out any problems, which may have been missed with the standard newborn hearing screening. Having this information early, if Nate should have a hearing problem, we will be able to get hearing therapy started and have him fitted for hearing aids or other devices if needed.

We know that Muffin can see. He startles when someone turns on or off a light in the room. He stares at his crib mobile and reaches for toys on the toybar on his bouncy seat.

He can hear, but how well? I feel that his hearing is fine. He startles to loud or unexpected noises. And he calms when crying when spoken or sung to quietly.

Starting in my 2nd trimester of pregnancy, I had an ultrasound 2 times a month. In my 3rd trimester, I had an ultrasound once a week. Even though ultrasounds are a tool and aren't 100% perfect in finding problems, I feel that with all of the ultrasounds that I had if something serious was wrong it "should" have been seen. So far Nate has reached all of his developmental milestones, which also suggest that his brain is functioning properly.

So the plan as of now is for Nate to have a consultation with a Genetics Doctor. We have requested that Nate be seen by Dr. Muge Calikoglu at UNC. She is Timmy's Genetist and the wife to Timmy's Endocrinologist. Nate will have a blood draw to test him for a mutation of the PAX-6 gene.

Physically, I'm up for the challenge of caring for another child with a visual impairment. Mentally and Emotionally, I'm still in shock and denial. I keep asking WHY this has happened yet again to our third son? Is there anything I could have done differently before and during my pregnancy to have prevented this from happeneing once again? Why did GOD choose Nate to have this affliction? I know the answer to these questions and all of the other questions, which keep popping into my head, but the questions along with the known answers keep cluttering my brain.

You are probably asking yourself, if I knew that Nate having a visual impairment was a possibility would I be so in shock and in denial? For nine months I hoped and prayed that he would be able to see. Following Nate's birth the Pediatrician gave Nate a clean bill of health from head to toe. We even asked specifically his opinion in regards to Nate's eye sight. Nate's Pediatrician's opinion was that Nate's eyes looked perfectly healthy. I was so releived. I thought that all of my prayers had been heard and answered. Nate would be able to see to run and play with his siblings and friends. He would be able to lay on a blanket outside at night and see to wish upon a falling star. He would be able to see the wonders of a rainbow following the rain. He would be able to see the true beauty of the colors in nature. To see the clouds in the sky on a clear sunny day and form pictures from these fluffy clouds in his mind. And in later years, possibly see the face of his newborn son or daughter. Now there is uncertainty as to whether Nate will be able to do any of these things.

In the end I know soon enough I'll come around to reality and accept the fact that Nate is visually impaired. I'll wipe away the tears. Stop blaming myself for being so selfish in wanting another baby after knowing the odds of having a baby who would have a disability. I'll go on with my life, Loving, Caring and Protecting Nate, because these things won't change with his new diagnosis.

With all of my heart and soul, Mommy Loves you Muffin!!!!