My son turns 4 years old today. This is a great accomplishment and I'm so proud of my son for his strenght, endurance, and will to live.
It's been 4 years . . .
48 months . . .
1461 days and (many sleepless) nights . . .
I lost count of the number of days Titus has spent in the hospital, the number of procedures, and there are days, I don't think I remember the long list of challenges that Titus' face.
The day Titus was born, and we saw that he could not breathe, we lived in a bubble that surgery would correct his jaw to improve his breathing and then everything we would be fine. And we stood by helplessly as they strapped him down in the transport pod to take him to Medical City Dallas. Neither one of us got to hold him that first day.
The next day, when the doctor met with us to let us know the results of all they had discovered - hemi-vertebrae in the spine, full cleft palate, horshoe-shaped kidney, not-quite-club foot, dandy-walker variant(cyst at the base of the brain) along with the noticiable micronagthia (recessed chin) - we just stood there in shock.
A few weeks later, we learned Titus needed a g-tube so they could continue to feed you and we sent Titus off for his first surgery.
A few weeks more passed, and they did an advanced hearing test since the first results were inconclusive. I watched the nurse as she ran the test. I watched her face . . . I watched the machine . . . and before she ever said a word, I knew the results. Titus could not hear - not a sound in either ear.
Before Christmas, we sent Titus back into surgery to have his jaw broken and reset with pins/screws. His soft baby skin was punctured with a hideous looking screw coming out behind your ears. Each day, I turned the screws to push his jaw out one small millimeter at a time.
In February, Titus came home after 62 days. I was as nervous as a first time dad having him in the house. But his brothers smothered him with hugs and kisses. It was the first time they really got to hold Titus without all the wires and machines. But 8 days later, the ambulance came to take Titus back since he was struggling to breathe. And we spent another 2 months in the NICU - 2 more months where we couldn't hold him and he was hooked up to a ventilator. He was so heavily sedated with painkillers, they had to treat him with methadone before he could come home to wean him off (baby rehab is what I called it).
And then we learned of the congential glaucoma and his eyesight would be limited if there was any at all. And a trip to Houston ended up being another 10 days in the hospital.
But Titus did come home, and we did settle into a routine of learning how to care for such a fragile child. And how to work with nurses and therapists in the home. And how to manage all the doctor's appointments, all the diagnosis, all the paperwork, all the referrals, all the questions.
After Titus turned one, he received his cochlear implant. And over the months, we experienced a thrill to see how Titus react when his cochlear was activated. It has given him the chance to hear and now we are watching him work with the therapist to mimic sounds.
When Titus was two, it seemed like we searched for a lot of answers - many that were answered in our trip to Cincinnati Children's Hospital. It was then we learned the conditions of his lungs - and were faced with a choice: A choice to trach and vent for the rest of your life, or a choice to live on oxygen and therapy. Either way, we were told at that point that Titus' life would not be as long as we would wish, but something that would be the hands of God.
When Titus was three, he started school. And has gone from going 3 days a week to 5 days a week. It is so much fun to see the little items Titus comes home with - and see the pictures of him finger-painting or going down the slide with his teacher.
And now he's 4 . . . wow.
My little hero has taught me a lot over the last 4 years. He has shown me life is meant to be lived and enjoyed. He has taught me that a blessing can come in a disguise. He has taught me that God's provision is greater than I ever could have imagined.
Happy Birthday Titus - I love you dearly.
It's been 4 years . . .
48 months . . .
1461 days and (many sleepless) nights . . .
I lost count of the number of days Titus has spent in the hospital, the number of procedures, and there are days, I don't think I remember the long list of challenges that Titus' face.
The day Titus was born, and we saw that he could not breathe, we lived in a bubble that surgery would correct his jaw to improve his breathing and then everything we would be fine. And we stood by helplessly as they strapped him down in the transport pod to take him to Medical City Dallas. Neither one of us got to hold him that first day.
The next day, when the doctor met with us to let us know the results of all they had discovered - hemi-vertebrae in the spine, full cleft palate, horshoe-shaped kidney, not-quite-club foot, dandy-walker variant(cyst at the base of the brain) along with the noticiable micronagthia (recessed chin) - we just stood there in shock.
A few weeks later, we learned Titus needed a g-tube so they could continue to feed you and we sent Titus off for his first surgery.
A few weeks more passed, and they did an advanced hearing test since the first results were inconclusive. I watched the nurse as she ran the test. I watched her face . . . I watched the machine . . . and before she ever said a word, I knew the results. Titus could not hear - not a sound in either ear.
Before Christmas, we sent Titus back into surgery to have his jaw broken and reset with pins/screws. His soft baby skin was punctured with a hideous looking screw coming out behind your ears. Each day, I turned the screws to push his jaw out one small millimeter at a time.
In February, Titus came home after 62 days. I was as nervous as a first time dad having him in the house. But his brothers smothered him with hugs and kisses. It was the first time they really got to hold Titus without all the wires and machines. But 8 days later, the ambulance came to take Titus back since he was struggling to breathe. And we spent another 2 months in the NICU - 2 more months where we couldn't hold him and he was hooked up to a ventilator. He was so heavily sedated with painkillers, they had to treat him with methadone before he could come home to wean him off (baby rehab is what I called it).
And then we learned of the congential glaucoma and his eyesight would be limited if there was any at all. And a trip to Houston ended up being another 10 days in the hospital.
But Titus did come home, and we did settle into a routine of learning how to care for such a fragile child. And how to work with nurses and therapists in the home. And how to manage all the doctor's appointments, all the diagnosis, all the paperwork, all the referrals, all the questions.
After Titus turned one, he received his cochlear implant. And over the months, we experienced a thrill to see how Titus react when his cochlear was activated. It has given him the chance to hear and now we are watching him work with the therapist to mimic sounds.
When Titus was two, it seemed like we searched for a lot of answers - many that were answered in our trip to Cincinnati Children's Hospital. It was then we learned the conditions of his lungs - and were faced with a choice: A choice to trach and vent for the rest of your life, or a choice to live on oxygen and therapy. Either way, we were told at that point that Titus' life would not be as long as we would wish, but something that would be the hands of God.
When Titus was three, he started school. And has gone from going 3 days a week to 5 days a week. It is so much fun to see the little items Titus comes home with - and see the pictures of him finger-painting or going down the slide with his teacher.
And now he's 4 . . . wow.
My little hero has taught me a lot over the last 4 years. He has shown me life is meant to be lived and enjoyed. He has taught me that a blessing can come in a disguise. He has taught me that God's provision is greater than I ever could have imagined.
Happy Birthday Titus - I love you dearly.
1 comment:
Thank you for that. What a wonderful description of lives being well lived. Amidst, around, and through the obstacles, the joys, the sufferings. A hope enjoyed and a hope deferred. Our 4 year olds have had vastly different journeys, but I always think and pray for yours because I live with ours. Love to you and Becky & the boys!
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