amommysjoy: Talk More Thursday... Sorry.

SO... we went to another eye doctor (we've seen him before, but it's the the one we went to last time.) This is the same doctor that was recommended our first visit. Anyway, THIS TIME they put some stain is his eyes and they could see that the top layer of his eyeball is almost completely sloughed off. Yes, I know. Crazy. So it wasn't just an abrasion, he probably had an actual blister on his eyeball. The doctor didn't really know much about EB, but he talked to a corneal specialist and he said that if he has rubbed a blister on his eyeLID too, that the eyelid could be what is rubbing on the eyeBALL and causing the trauma. So he said option 1 was to just keep the ointment in at all times and provide a barrier. Option 2 was putting a contact lens in to protect the eyeball from the eyelid or from anything else. And Option 3 was surgery. Surgery will consist of smoothing out of the eyelid and then applying a layer of amniotic tissue over the eyeball to protect it and try and heal the eyeball. I've pretty much already been doing option 1, so I chose option 2. I was actually the one who recommended the contact lens idea BEAUSE of another AMAZING EB mom, who e-mailed me. Her son Ryan also has JEB and was having the same problems. She said the contacts have worked for him. Thank you so much, Denise... I am forever grateful.. even if it works for a day! So first they tried putting the contact in with us just trying to open his eyes with our hands. That DID NOT work. He can close his eyes SOOO tight. It's impossible to get anything in there. So next was the speculum. I was totally ANTI-speculum because Ryan's mom told me to avoid it if at all possible. But it was the only way. And so far I haven't noticed any trauma from the speculum. We just had to hold his head REALLY still. He was so hysterical. I was completely nauseous and almost had a nervous breakdown. I will definitely need a sedative next time. Tripp and I both. But we finally got it in his eye and he was like a totally different baby immediately. So we will see if the contact will help his eye heal. We go back in one week to check it all out... unless it comes out before then. We ABSOLUTELY have to keep his hands away from his eyes. So I'm looking into putting something under his elbows, over his bandages and wrapped to his arms so that he can't bend them to rub his eye. I may only use it at night... or if he doesn't completely freak out, I can try it during the day, too. So we have to keep our eye on him every single second to make sure he doesn't rub (we do that anyway... I know.) He had a very traumatic day! And can you imagine the pain that he's been in with an eyeball that's been SLOUGHING off?? God Bless him... I am SO glad they finally found out what was really going on. I knew that I have been seeing a film over his eyeball, but I thought it was just a film from the blister on the top lid. Never did I think it was the actual top layer of his eyeball. Wow. Anyway... THANK YOU, THANK YOU, THANK YOU for all of your prayers. I am SO grateful!

Ok, so I don't even have the words to express how totally awesome my blog readers are. I promise you that I would absolutely NOT be able to make it through these tough times without the kind words and support from all of you. I literally bawl when I read the comments that left after I pour my heart out in a post. There are people from across the country who have no clue who we even are, that pray for our family every night. OUR family gets included in daily prayer from so many kind-hearted people. It is truly touching and almost sureal. My strength I know was given to me by God. But the day to day, minute to minute struggles that I face are made easier by the kindness and support from all of you wonderful people who read this blog, follow the story of Tripp's life, and who support me whether I am happy and thankful or down in the dumps and ticked off! That means more to me than you all will never know. How lucky I am to have so many people who care. Thank you.

Now for all you absolutely amazing, fabulous EB moms who read my blog and email me with suggestions, opinions, support, a shoulder to cry on, ETC... I love you all. God obviously chooses us because we can handle it, but my God... I don't even feel like I fit into a category with all of you wonderful people. EB moms must be the strongest, most caring, most patient, and selfless people I know. Thank you all for you support in these rough times. When I feel like I've hit rock bottom, you all are there like an army to pick me right back up. God Bless all of you. I wish I could find each one of you and give you a big fat bear hug, because I KNOW you know exactly how I'm feeling right now.

I will let you know how Tripp's eye is doing either this evening or tomorrow. I am hoping and praying that the contact lens will be able to stay in and help with the healing and the pain. Thank you all for your support. And please continue to pray for our little man. He is such an angel.

Here's some pictures from today. He was SUCH a good boy and AMAZING as always! His eye is still green from the stain. I don't know how long it will stay green, because I will probably need to flush it with saline to get the green out, but I can't with the contact lens. As long as it feels better, I don't care what color it is!!