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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....

Saturday, July 25, 2009

Our "NEW" Normal

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

Look closely at this picture of Timmy.
Do you see anything different in this picture compared to other pictures of him?????

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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