Here we are again! It is that time to raise money for our bi-annual ican conference. This time it is in July and in Chicago.
So much has happened since the last time we wrote our FirstGiving page. Lily Grace is now 2 1/2 and a ball of spunky energy. She is absolutly the most happy little girl. Nothing gets in her way of anything she sets her mind to! As I reflect back over the last couple of years, I cannot help but to be overcome by emotion. When Lily was first born and all the questions and fears that we had. They were crippling at times. Would she lead a normal life? How was I going to handle all of the questions about her eyes? How were we going to teach her all the wonders of the world? What would her future be like? There were so many more questions...
Fast forward to now... I cannot tell you how much our outlook has changed. Of course I still worry about her future. We still don't truly know what sort of vision she has, but she sees. That's what is important now. I still worry about how her head is growing because of the small size of her eyes. I think about...Will she be able to drive? Will she be able to read? But those worries no longer consume me to the point where they make me so sad.
All you have to do is meet Lily. She is so articulate and smart. A true ray of sunshine. We have been blessed with an angel here on Earth. She can identify people when she sees them. Give her a book she will point out pictures and can distinguish different animals and people. Colors are a different story though. We are struggling with colors. We are not sure if she is color blind.
Lily loves to swim and jump into our pool. A regular little fish when it comes to the water. The outdoors are one of Lily's favorite places to be. The playground is where she learns to overcome many obstacles. I never realized how scary a playground can be until having a "visually impaired" child. All of the other children zooming past your child and not realizing that she didn't see them... The playground is so crazy at times. Lily had a hard time with depth perception and still has a bit of that still. She compensates and takes her time when we prompt her or she does figure it out on her own, by noticing the difference in a pattern. Over the last several months she has mastered the stairs at the playgrounds and been able to go down the slides on her own. Yes, we get all kinds of stares while we are there. Oddly enough to me it has become so normal, that I automatically educate. I proceed to tell them why she looks "different".
Lily Grace was born with a rare genetic eye condition called bilateral microphthalmia. She has double colobomas and nystagmus. Lily's left eye is the eye that we believe is the only eye that has vision. Her right eye is the one that doctors told us would not have any vision. This is why it is so important to go to these conferences. We get to meet other families with children that have the same conditions as Lily. There will be doctors and specialists there as well that can give us more insight on what we need to be doing for Lily's eyes and for her overall health. Right now we are in a holding pattern. Our local pediatric opthmalogist doesn't really give us any guidance ..other then "Come back and see me in a year". Our local pediatrician has never dealt with a child with Lily's conditions before. When we go to these conferences, those are people who see this on a daily basis. We NEED to go so we can get Lily on the right path. It is so expensive to find the right medical help for Lily. She acts like a normal 2 year old for the most part, but she is still visually impaired. There are very few places that we can go to in order to get answers to our questions.
It is so important that we reach our goal. These conferences are so benefical for our children and for the families as well. At the last conference, we made so many new friends and feel like we have a small community of families we can reach out to if we need to talk about our children. It raised our spirits and gave us HOPE. We need to raise money in order to pay our way to the conference, our room and for our amenities. Please feel free to donate what you can and please pass along our story. Lily Grace is so precious to us and we want to be able to get her in touch with the best medical specialists that we can. We felt so overwhelmed by the outpouring of love from everyone that helped us raise money for our last conference. Thank you all so much for taking the time to read our story.
:OUR LAST POST FROM OUR FIRSTGIVING PAGE::2011
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 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. 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 discovered she had a coloboma and nystigmus. But I wasn't 100% sure if I was right. 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!
We felt so lost, scared, hopeless. 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.
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Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!