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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Sunday, December 26, 2010

World's Greatest Endocrinologist


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.”

Saturday, December 25, 2010

Merry Christmas

                  MERRY  CHRISTMAS
             From Our Family to Yours!


Thursday, December 23, 2010

5-Months Old

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.

Friday, December 17, 2010

Just Because.....








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.



Thursday, December 16, 2010

Timmy's Class Christmas Program

                   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, November 21, 2010

Sunday's School Podcast - Old McFaye's Farm

Old McFaye's Farm
Old McFaye Had A Farm E.I.E.I.O...
And on her farm she had a.....



                            









                                                                                                                                                 

Saturday, November 20, 2010

Daddy and Me

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

Friday, November 19, 2010

Brother And Me

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.


Wednesday, November 3, 2010

Where Did My Baby Go?

HAPP7th.  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





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