Hello Everyone!
We are raising money for the ican Network in hopes that we can help ourselves and others with scholarships to go to the annual conferences.
This is our journey with our Lily Grace.
Lily Grace James was born on August 24, 2010, my pregnancy was normal. She was perfect in every way, all 7lbs 5oz. of her. She had the most wonderful chubby cheeks. No one suspected anything. I noticed later in the evening that her eyes would roll and jump about. I felt like something was not right. I pulled the nurse aside and asked her if it was normal, she told me not to worry that alot of babies are born with poor eye muscles. Lily is my second child, my son is 6 years old, and I still felt like something wasn't right with Lily's eyes. It was my motherly instincts tugging at my heart. When the peditrician came to see her, I forgot to mention her eyes to him but he didn't say anything about them. He did want me to come in the next day for the follow-up visit. I didn't think anything of it. When it was time to take Lily Grace home, she passed all of her tests with flying colors. Off to our house we go with our beautiful baby girl. Not another thought was given to her eyes until later that evening, my heart was starting to ache again. Her eyes just seemed so peculiar. I was starting to feel guilt. What did I do to cause my little "Lily Bean's" eyes to be this way?? Why?? How has this happened? I cried all night long and wondered what was wrong. I chalked it up to post partum. So the next morning Lily and I go to the peditrician. I was shaking all the way there and could not wait to hear what the doctor had to say about her eyes. They called Lily's name and we walk the long walk back to the exam room. I am a wreck at this point. When the peditrician walked through the door, I burst out, "So what is wrong with her eyes, that is why you wanted to see us so soon, right??" He just looked at me like I was crazy. He shook his head no and said, "What do you think is wrong with her eyes??" I told him I noticed them wandering all over the place and that they seemed small. I also had noticed that her left eye pupil was shaped funny and that the whites of her eyes were covering the iris. He just stood there for what seemed like an eternity. He examined her eyes and said that he didn't think that there was anything to worry about. Well, I was appeased momentarily. He said Lily was perfectly healthy in every way. Okay, so we left the pediatricians and went back home. I was becoming unsettled again, I just didn't feel like everything was okay. I started to research online. I typed in small eyes..nothing. I typed in small baby eyes...nothing. I typed in abnormal pupils....up came a link to colobomas....Lily's eye definitly fit the description for that. After several long hours, I still wasn't finding to much else to help me figure out what was wrong with her eyes. I discovered she had a coloboma and nystigmus. But I wasn't 100% sure if I was right and the more I researched over the next several weeks the more I was getting so frustrated and worried for my little angel.
On our next few visits to the peditrician, I kept bringing up my concerns about Lily's eyes. Finally he gave us a referral to an pediatric opthmalogist. Well, that didn't go so well. The eye doctor was not very friendly and not tactful at all. She told us indeed that Lily had a coloboma of the left eye and nystigmus (which I had figured that out already) and then she tells us Lily has bilateral microphthalmia. I had also come across this as well. We asked her what we could do about it. NOTHING! We tried to ask more questions, and she wouldn't answer with anything but, "There is nothing to be done."
We left there devistated. What kind of life would Lily lead? How are we going to help her? What can we do? How did this happen? Why? Lily was still to young to figure out if she had any vision, but she didn't seem to have any. At our next pediatrician visit, I asked for a name of another pediatric opthmalogist. We were given Dr. Derek Hess' name at All Children's Hospital in St. Petersburg, FL. We had our first appointment, and he seemed so friendly. We were so excited that he will be able to help Lily and give us the answers to what we can do to fix her eyes. That didn't go as planned either, he told us her conditon is static. Meaning not changing...it is what it is. That kept ringing in my head, "It is what it is". Now what? Not much to do other than schedule an eye exam under anesthesia so he can see the structure of her eyes. So we did the exam, and Dr. Hess confirmed that Lily was indeed bilateral microphthalmic, had a coloboma of the left eye, nystigmus, and (this was the kicker) a mass in her right eye. The mass looked like a jumbled mess of nerves and blood vessels, like chewed up bubble gum. We thought that her right eye would have been her "good eye". He also stated there is pretty much no hope for vision in her right eye. Her left eye, we had some hope for possible light and shadows. But not to get our hopes up. We had an MRI next to make sure the mass wasn't a retinoblastoma, and it turned out not to be. Praise the Lord! Now we have to go back every 3 months to make sure it doesn't get any bigger. So we really rallied amongst our families and friends and sent out many prayer requests for the healing of her eyes.
We felt so lost, scared, hopeless. We would pray every day several times a day. We would tell random strangers about Lily's eyes, and ask them to please pray for her eyes. She needs lots of prayers. God is the only one who knows why he made our "Angel" as special as she is. He has a plan for her and our family. Sometimes it is hard for us to realize in our moments of distress and disbelief. But God has lead us to several wonderful people that have started to give us hope.
After a few more months and lots of prayers later, we noticed Lily tracking the screen light on my cell phone!! This was amazing! Our hearts filled with joy. She can see "something". Then slowly she started to show some amazing progress, she would look for things, toys and people. She still is amazing us daily with the leaps and bounds she is making. Lily holds her head down most of the time, but is starting to keep it up more frequently. Lily Grace is now 7 months old. She sits up by herself and would rather be sitting all of the time. She also loves to stand holding on to someones hands. She has yet to roll over at this point, but we are trying. Her left eye seems to be the only one seeing. We get a little glimmer of hope every now and then for her right eye seeing something.
We have had no assistance monetarily and little help towards her development. It has been a very frustrating time trying to make sure we are getting the appropriate help for Lily. I am thankful for the ican Network putting me intouch with some wonderful people to help us begin our journey to help Lily with her condition. Just recently we have gotten a visual therapist to visit our house once a week to work with Lily as well.
This is why it is so important to donate to this cause. The conference will put us in touch with specialists and families who have knowledge about microphthalmia. My husband and I feel so alone when it comes to knowing what to do for Lily, and this would give us a chance to meet others dealing with the same issues and challenges as us. We want to give Lily the best resources to help her develop into a strong, independant young woman.
We will also take prayers for our little "Lily Grace" and we know that ultimately it is all in God's hands. As most of our friends and family know, we have fallen upon hard times, Pete has been unemployed for 2 years, we have had our cars repossesed and our house is quickly going into forclosure. The medical bills are starting to mount up and we are struggling to keep "afloat". Please pray for our family as well, that things will begin to look up for us. With all of the situations we have encountered in the last few years we have definitly been humbled.
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