Tucker

I’ve started to write this blog post many times. Over the years I’ve felt small nudges from God that he wanted me to share my story but Im a pretty private person and I’ve just kept deleting it and putting this off. Maybe this will help someone with a fresh diagnoses- maybe it will just bring awareness or.. maybe it will just enlighten my friends and family. Either way I suppose its about time to share my story.

We had our first child Tucker in 2008. We left the hospital with 1 diagnoses of a birth defect that he would have repaired at 6 months of age. I had a terrible labor and delivery with him so the first few days/ weeks of his life were taking care of a colicky baby while still in pain and groggy. We began to slowly notice though that he barely ever opened his left eye. At around I think 2 weeks of age I finally brought my concern up this pedi also pointing out that the eye appeared to be smaller than his right. We were sent down to children’s hospital of pittsburgh (CHP) where the Ophthalmologist informed us he had never seen this before and would have to refer us to another specialist. Finally at almost 3 months of age we got the diagnoses of microphthamia. A micro eye is essentially an abnormally small eye and occurs in approximately 1 in 10,000 individuals. Over the course of his first 2 years and several mri’s, ct scans and many other test we found out that he also was born with bilateral (meaning both eyes) optic nerve colobomas. Colobomas are missing pieces of tissue in structures that form the eye. And your optic nerve is the part of the eye that carries information from the eyes to the brain. Tucker has some light perception and can see a little movement in his left eye but that is all. And due to the optic nerve coloboma in his right eye his vision is also impaired in that eye . He is also at some risk for more vision loss so is currently learning braille and cane skills. He also has nystagmus and astigmatism in his eyes as well. The colobomas cause the eyes to be extremely sensitive to light. So he wears transition lenses and often in the summer also a hat. We occasionally have to dim the lights inside our home and use blinds for him as well. This also goes for anywhere he is such as school. Despite all of this he does exceptionally well! He is an amazing little boy!

 

About 2 1/2 years ago my business was booming! I was doing awesome and had a slew of weddings in a row. The week before my second wedding lined up he began complaining of eye pain. His optho fit us in right away where we learnt that his retina had begun to lift in his left eye. He had an eua (exam under anesthesia) done where we were told that surgery was not an option for him. We traveled to Philadelphia to see a pediatric retina specialist where he confirmed the same thing. The chances of the surgery working on such a weak eye was slim to none. And if the body did reject the surgery there was a good chance that the body would then recognize the good eye and attack it causing more vision loss. We were informed that there was a chance once the retina detached more that the pressure could increase in his eye. And that’s exactly what has happened now. I called and got him an earlier appointment with his specialist due to his complaining about eye pain again. She got a very high reading in the office so he was diagnoses with glaucoma and is now on drops 2x’s a day to help control the pressure. There is a huge list of side effects related to those drops but at the moment we’ve only experienced one so far. They burn when first put in. He asked me the other day when I could stop burning his eye.:( He still does not quite understand that theses drops/ possibly other drops/drugs will be used for life. Or as long as he still has that eye. All of this right here is why I cut back on weddings and sessions. I never want to be in a situation again where I have a wedding to shoot, wedding albums to create, photos to edit, and more things going on with my son. My family comes first.

Most importantly though: He’s sweet, kind, caring, a great big brother, funny, smart

andas much a “normal” child as his peers. You know just to name a few:)

Vision kids can do everything and anything that they put their mind to.

I was talking with a lady a few weeks ago and I keep going over in my mind. After talking with her awhile we got on the subject of Tucker. She told me she didn’t know how I did it- and how I seemed like it doesn’t affect me. It does affect me in every possible way. The first year of his life was a very dark time for me. We were just learning about his diagnoses and no one had any idea what to expect for the future. I quit my full time job when he was 6 months old so I could be home with him when he started Early Intervention. And it was around that time that God granted me the gift of photography. God took a hard time in my life and turned it into good. Any talent that I have is a true blessing from God. And I use it to gift to glorify him in any way I can. We take everything one day at a time. Tucker has been a true blessing in our lives and I have to remember that things could be so much worse. Frequent visits to children’s hospitals and specialist centers really bring thing into perspective. I still have moments of weakness, anxiety attacks, crying spells… you name it. Im human. But I am learning each day to lean on God and give my anxieties and fears to him.

This coming tuesday Tucker will be having another eua done to check on the pressures of his eyes again. We were originally told we’d have to wait for April for this to be done. Were praying that we get good news and that the drops are working. Any and all prayers are greatly appreciated!

 

 

 

 

 

 

 

 

 

 

 

 

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