"It can always be worse!" and it was.

   Where to even start. My brain is swirling. My world has flipped upside down. what we thought was just a hearing loss with a cleft, is looking like so much more.

   Dr.CL sent us to an ophthalmologist to check out Celinas eyes. Just as precaution with her other issues. I almost cancelled the appointment. It didn't seem like there was any issue. she seemed to see just fine to me. I was wrong. She has a rare anomaly called coloboma in both of her eyes. The chances of this is less than 1 in 10,000!!! I was in absolute shock!!! The optimologist explained it this way;
"Its like a cleft of the eye. a hole in the eye where the tissue never formed." He then pulled out a picture of a retina and explained to me where the optic nerve was and Central vision. He explained that her "cleft" we will call it, went from the bottom of her retina and arched up almost touching the Optic nerve and came back down to the other side. That being the location means that her upper peripheral vision was completely gone. never existed. Think of wearing a hat where the brim is sitting at the top of your eye and was also a few feet long. That is what her vision is like. they weren't able to tell yet if there is any effect on the rest of her vision, as in near/farsightedness, so we go back in six months to re evaluate. I wasn't able to ask many questions due to the fact that I couldn't swallow and was trying desperately to hold back tears.

  That's not so bad right? If it was an isolated incident it wouldn't be. Our main concern now is that, in connection with the hearing loss, cleft, and Bifid uvula, These defects usually only present together in a Syndrome, other sequence or bigger issue. We talked to Dr.CL today and he explained that with most syndromes there are problems with the heart, liver and kidneys. Also the brain. I'm sure you can understand the fear that comes with that statement. I'm terrified. So Dr.CL put orders in for an Echo cardiogram, which is kind of like an ultrasound for the heart. An ultrasound for her liver and kidneys, and a referral to a neurologist. He also put a note in to the Crainiofacial team to get her to the geneticist a bit sooner. The plus side on receiving this news was, with a syndrome her issues as they are, its possible they may be the extent of them.

   CHARGE Syndrome. This is the first Syndrome Dr.CL is looking at. If you want to get really scared, go ahead and google it. If she were to have this, her form would be very mild. CHARGE syndrome comes with Colobomas, Ear problems/hearing loss, Deformations/clefts, Physical and mental retardation, Urinary Issues, Heart Problems, Skin issues, Liver and Kidney Issues, OCD, sensory issues,The list goes on. Not every person who has this has every single symptom, and the severity of them varies from mild to severe. I read on one website and my understanding (and I could be wrong) was that generally a child with 4 of the defects to be diagnosed with CHARGE. Celina has 3 so far with what we know.


   Ok. Now for the part where I  let my emotions out. I now know I'm making this blog public and people will be reading it so I'm extremely nervous. Anyone who knows me, knows how much I hate showing sadness or "weakness". I'm just horrible at it. I'm an excellent faker. Something about showing emotion makes me feel extremely vulnerable. when I'm alone is the only time I feel completely free letting it out. I know its not healthy to be this way all the time so here goes.

   I haven't been able to eat in 2 days. LH brought me cookies after hearing the news and that's the only thing I've been able to eat in two days.Sleeping is also an issue. I just feel nauseous. The unknown is just way to much for me to handle. I don't do well with having no control. With that comes my love/hate relationship with google. I'm constantly googling every little thing I can think of that might have a connection. The tears are off and on. I haven't had a complete breakdown yet. Nor a good ole fashioned bawl fest. I just tend to tear up here and there.  The stress is definitely taking its toll. Im snapping on Ryan over the stupidest things. Thankfully I have such a wonderful understanding husband. I cant speak for him, but I know he is having a very hard time with this as well. And as odd as it sounds, seeing Ryan break down comforted me a little. It reminded me that im not alone. Hes going thru and feeling every emotion that I am. Yes hes not able to be at every appointment, and be the one to initially receive and give the bad news. But its his daughter too. Im not alone. I just need a break. I just need to know my princess is ok. Please let her be ok.

Also feel free to ask questions!