Sunday, April 12, 2009

Fight for Sight

Elijah's vision has been a roller coaster ride emotionally for Dave and me. After Elijah's birth and subsequent 11 day stay in the NICU at Saint Francis, the nurses told us that every child who stays in the NICU is referred to an opthamologist. The opthamologist generally visited the kids in the NICU one day a week and since Eli made his grand entrance two days before Christmas the opthamologist wouldn't be visiting the NICU during Eli's 11-day stay. So, we left the NICU with instructions to see Dr. Groves. Being responsible for setting Eli's appointments, I immediately set one with Dr. Groves. Seemed like a routine kind of thing. Not a big deal.

Well, when the day came around for Eli's appointment, it happened to be the day after his g-tube placement surgery and he was in PICU on a ventilator. I'm a very multi-tasking person plus I realized if doctors saw Eli in the hospital, I didn't have to pay a co-payment, so I called the opthamologist's office to see if the good doctor would see Eli in the PICU instead of in his office and he agreed. David was on his shift when Dr. Groves arrived. Eli's eyes were dilated and ready for examination.

David calls me with the report and his first words are "are you sitting down?" Now, my dear husband has a flair for the dramatic. But asking me to sit down, I knew that was big. Plus, my kid was in the PICU...geez. So, David tells me that Dr. Groves reported "Hummm, I've never seen that before," upon Eli's exam. Trust me, even at 4 weeks old, we'd heard this statement more than we wanted. He reported a paleness and white spots on Elijah's retinas. He left saying he would have to do some research.

We followed up in his office a month later and Dr. Groves gave us good news saying that his eyes looked like a different kid, but that he didn't expect Eli would be able to see very well at all. He referred us to the specialists at Dean McGee in OKC.

I vividly remember pulling into the parking lot at Dean McGee for Eli's appointment and praying "God, I beg you for Elijah's sight, I beg you." We went in to see a specialist who referred us for an eye test involving putting wires across Elijah's eye balls and flashing lights in his face. The results were dismal. The doctor told us that "unfortunately, Elijah's retinas didn't respond to the light." David and I were dumbfounded. David said "But he tracks" and the doctor snapped "I didn't say he was blind." It was by far one of the worst experiences we've had with so-called specialists. Certainly to the unknowing, being told your kid's retinas didn't "respond" sure sounds like blindness or close to it. The doctor continued and told us we'd just have to wait and see if his vision improved any or stayed at its current level. He also told us that it is different for a child born blind because they know no different.

A few weeks later, the doctor sent his report to our local Sooner Start vision representative diagnosing Elijah with a syndrome that causes blindness and mental retardation. The Sooner Start representative brought me the diagnosis.

I spoke to Elijah's geneticist who said it would be VERY rare for Eli to have two genetic syndromes and OF COURSE this blind syndrome had nothing to do with legs, arms, head, etc. It was this experience that I started realizing that I leave the genetic diagnosis to our geneticist only. Now, if I could just get that across to the EYE docs, and the RESIDENTS, and the surgeons, and the GI docs. They have all given us their opinion of what underlying issue Eli has causing all of his problems. Like they wanted to be the one to solve the mystery.

So, we left Dean McGee with a completely awful prospect for Elijah's vision. Now, remember that at the same time, we were being told he had significant hearing loss as well making the blow even tougher.

The months went on and we decided to avoid eye doctors for a while. Their test results and opinions didn't measure up to what Elijah seemed able to see. We decided we'd let him develop instead of listening to the specialists.

This last week, we returned to Dr. Groves' office for an appointment. The absolutely wonderful news is he can definitely see (I didn't need Dr. Groves to tell me that). He has one very good eye and one not so great eye. He needs glasses.

The news of glasses was really hard for David to swallow. He wants Eli to get to live device free for as long as possible. We forced leg casts, leg braces, hearing aid, feeding tubes, gas release bags and IV poles on our kid for SO long, but lately, he's had little devices...just a feeding tube for feedings five times a day, casts and splints. Okay, writing this down, Eli's been a device kind of kid his whole life. And, it's just going to get worse.

Every time we get news on Elijah, one of us is okay and one of us is not. The glasses thing (even if it seems minor to those of you who may have only glasses to deal with for your kid) was not okay with David, but for me, I'm excited to get to help Eli see even better. I rejoice constantly that he can see. My begging in the parking lot of Dean McGee was heard and answered.

I can tell you that Sophia is going to be jealous because she'll be the only Ramirez without glasses. For some reason, I just expect that one day she will need them, but for now, she is our device-free child and we are glad for that.

So, there is the very, very long eye story for Eli. The point being to bring you up to speed that our guy will be getting glasses in the coming weeks. Pray that we select the right type of glasses that will stay on Eli's cute head and that the glasses will make a remarkable difference in Elijah's sight.

Happy Easter! He is risen indeed!

Love you all!
Melissa

3 comments:

Emily Kaye said...

Well, considering the fact that Sophia will be the only one in our family without glasses, I'd say she's very fortunate. Praise the Lord for the mighty works He has done in Eli's life and in our lives because of our constant need to trust Him. I love you all!

Anonymous said...

My dear Melissa (Mother of Eli):
I can't begin to imagine all you and David have experienced these past two years. I feel so inadequate in even speaking to you about all the up and down feelings but I do know a "happy kid" when I see one and Eli was a "happy kid" when he found his first red race car. Thank you for allowing us to share these special moments.

Angela Stevens said...

Melissa,

Did the ophamologist give you a terminology for his sight difficulty? Aaron was diagnosed with Amblyopia last June. I posted about it and felt alot like David probably does. We have to wear a patch as much as possible now in the hopes of strengthening his weak eye- add that to the list of things Aaron doesn't like. I definitely think it is better to start glasses younger than older. That way Eli will hopefully wear them without constantly tugging, twirling, and bending them. Yep - We are on our 4th or 5th pair and constantly go to have those fixed.

Good luck, As always your family is in our prayers.

Angela Stevens