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Alyssa's Blog
Friday, February 14 2014
Better Days Ahead

First off, we would like to say thanks to everyone for all of the thoughts and prayers. All of the support we are receiving is absolutely amazing.

Unfortunately, Jaxon's cornea has been completely rejected. We also found out that his diagnosis of Peter's Anomaly is not exactly accurate. Although the two are very similar, his doctor's said what Jaxon has is called sclerocornea. 

Jaxon's eyes did not develop correctly so his scleral tissue (the white part of your eye) formed over where his corneal tissue is supposed to be. Your corneal tissue does not have blood vessels and we can see vessels in that area of Jaxon's eye, that is how we know its scleral tissue and not corneal tissue. Long story short, Jaxon's body will never accept a cornea transplant. It will reject quicker each time that we try. 

His pressure was also high. We are going to try a new glaucoma drop until our next appointment in 3-4 weeks. If the drops do not work we will have to surgically intervene in one way or another.

Option 1: The K-pro

Because a human donor corneal transplant is no longer an option, our only choice for creating a clear window to gain vision in Jaxon's eye would be to use an artificial cornea (called a k-pro). Although these transplants usually provide great visual results, there are a lot of complications that come along with them, especially in children.

If we decided to go this route, Jaxon's lens would be removed and a shunt for glaucoma would be placed, along with the k-pro being implanted. This is a lot of trauma to his little eye and any intrusive procedure like this could result in retinal detachment which would mean no vision in that eye at all, ever.

Children with K-pro's must be watched extremely closely in case of infection. Infections are devastating to these kids and, again, usually end in retinal detachment or loss of the eye. This would mean antibiotics and steroid drops up to 16 times a day on top of his glaucoma meds.  

Jaxon and steroids don't mix well. Every time we start new drops he develops thrush (yeast infection in the mouth). When he has thrush he doesn't eat well because it is painful, I don't blame him. He lost two pounds from his last appointment. He weighed 12 pounds 8 ounces today. One nurse walked in and said, I forgot how small they are at 5 months, I have a 7 month old at home. I said, "Well, he is actually 10 months old." He's tiny. 

Anyways, To prevent infection, Jaxon would not be able to swim in a pool or his grandpa's pond. We would have to basically put him in a bubble throughout toddlerhood and childhood to prevent trauma from falling or anything else that could compromise his eye. This is a little boy who cracks up when he is swung around upside down by his ankles, I think we might have a hard time restraining him from potential dangerous activities.

Option 2: Comfort and Normalcy 

As a family, and with the input of his doctors, we decided that because we can see that Jaxon has a lot more vision in his left eye than we ever imagined he would, we opted for the following option:

This option is to do a laser treatment to treat glaucoma to make his eye comfortable and also figure out a cosmetic option for Jaxon to make his eye look as normal as possible. We will schedule this at our next appointment if his pressure is not lowered by the new drops.  

Although it is unfortunate that we can't do anything right now to regain sight in his right eye, we don't want Jaxon's quality of life to be compromised. That is what is most important to us. If he got the K-pro implanted, his childhood would not be normal and we would all constantly be worried of something happening to his eye. 

It's Jaxon's Happiness That Matters

It is more important for us as a family to let Jaxon be a little boy. We would much rather see him jump in the pond, ride a bike and play in the dirt than take the chance to obtain more vision for him. I asked my inner childhood self the question, if I was in 6-year-old Jaxon's shoes, would I rather be able to see other kids jumping into the pool but have to watch from the sidelines, or would I rather maybe not see them as clearly, but jump in the pool right along with them? I obviously chose to make a splash, and I think Jaxon would too. Whats so great about seeing if you can't enjoy the fun stuff that you see?

Besides his eyes, Jaxon is an otherwise healthy little boy and he is as happy as can be. Possibly obtaining more vision is not a good enough reason for us to risk his future happiness by having to hold him back from the normal stuff that kids do.

We are happy with our decision and, although this is not ideal, we are all okay. Our day to day life isn't going to change and Jaxon doesn't know that anything is different at all since he hasn't been seeing out of that eye anyways.

Being Thankful For What We Have, Not Upset About What We Don't

Every appointment at the U helps us understand how lucky we actually are. Jaxon has a normally functioning (but tiny) body. He will be able to run, read, and be whitty someday, just like his mommy. He will be able to get dirty, build fires, and play in the woods someday, just like his daddy. He will be able to play in the yard with his doodle brother and doodle sister. What more could we ask for?

There is always a bright side, no matter what situation you find yourself in. The key to being a happy person in the face of adversity is being able to see that brightness in the dark times. We know in our hearts we made the right decision for our little superhero. We were disappointed at first but as soon as we saw our little man being wheeled through that door, we knew we had to be brave for him. Sure, he might not be able to see out of that eye, but if we let every setback bring us down, he will learn to do the same.

It might seem like today would have been one of the worst days we've seen, but we finally feel some closure. We no longer have to question whether or not we should try another transplant. We no longer have to imagine what the outcome would be if we tried one thing versus another. Now we can focus on helping Jaxon grow and achieve, instead of worrying about making a decision about what to do next.   

Every seemingly terrible circumstance has the potential to teach. Jaxon's condition has taught us a lot about our strengths as individuals and as a family. We have learned from everyone out there that our boy has the ability to inspire. He has definitely inspired us to want to make a difference in this world. So once again, we thank you all for the support you have shown us and we can't wait to show everyone the leaps and bounds Captain Jax is making as he continues his fight for sight!   

Posted by: Alyssa AT 05:23 pm   |  Permalink   |  Email